44985193-The-Complete-Guide-to-Vitiligo-Corner-2010

ARTICLES AND COMMENTS FROM 2010 WRITTEN AND COMPILED BY NATHALIE PELLETIER

Vitiligo Corner 2010

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Table of Contents

What is Vitiligo? ............................................................................................................................................................................................................. 4

What Causes Vitiligo? .................................................................................................................................................................................................... 5

Vitiligo Symptoms .......................................................................................................................................................................................................... 6

Life with Vitiligo ............................................................................................................................................................................................................. 7

Vitiligo Corner Posts 2010 ............................................................................................................................................................................................. 8

Does vitiligo make you feel lonely? ............................................................................................................................................................................... 8

First vitiligo world congress 2010 ................................................................................................................................................................................ 10

10 Comments ........................................................................................................................................................................................................... 13

Can forgiveness cure vitiligo? ...................................................................................................................................................................................... 15

2 Comments ............................................................................................................................................................................................................. 16

Vitiligo treatments: nbUVB and pimecrolimus ............................................................................................................................................................ 17

Iran ‘revolutionizes vitiligo treatment’ ........................................................................................................................................................................ 18

9 Comments ............................................................................................................................................................................................................. 19

Teen model’s vitiligo campaign.................................................................................................................................................................................... 21

2 Comments ............................................................................................................................................................................................................. 22

st. louis vitiligo support group meet-up ....................................................................................................................................................................... 23

One Comment .......................................................................................................................................................................................................... 24

Skin transplant offers hope for vitiligo ........................................................................................................................................................................ 25

6 Comments ............................................................................................................................................................................................................. 28

Dr.Oz show, promising vitiligo concealing method ..................................................................................................................................................... 30

Hypochlorhydria, vitiligo connection? ......................................................................................................................................................................... 31

Comments ................................................................................................................................................................................................................ 34



Pigment disease ‘reduces cancer risk’ ......................................................................................................................................................................... 36

Vitiligo repigmentation success ................................................................................................................................................................................... 40

18 Comments » ........................................................................................................................................................................................................ 41

Vitiligo solution near with Avita’s “Recell”? ................................................................................................................................................................ 45

36 Comments » ........................................................................................................................................................................................................ 47

UV-protective drug to be tested for vitiligo ................................................................................................................................................................. 55

23 Comments » ........................................................................................................................................................................................................ 57

The drug development process – Part 1 of 3 ............................................................................................................................................................... 65



Interview with Clinuvel ................................................................................................................................................................................................ 71

10 Comments » ........................................................................................................................................................................................................ 76

What is segmental & non-segmental vitiligo? ............................................................................................................................................................. 79

What goes on during clinical trials? ............................................................................................................................................................................. 81

Is there a connection between gluten intolerance and vitiligo? ................................................................................................................................. 83

Can gluten be absorbed through the skin? .......................................................................................................................................................... 83

Vitiligo World Congress 2010 – thoughts and reflections ........................................................................................................................................... 85

38 Comments » ........................................................................................................................................................................................................ 87

Vitiligo can help us, help others ................................................................................................................................................................................. 104

6 Comments » ........................................................................................................................................................................................................ 106

About the Author ....................................................................................................................................................................................................... 107



What is Vitiligo? Vitiligo is quite a common skin disease which affects at least 2 people in every 100 in countries throughout the world. Anyone, male

or female, irrespective of skin color or ethnic origin can develop the condition.

Vitiligo causes the skin, and sometimes the hair, to turn white in patches. This is because melanocytes, the cells

which give the skin its color, have either been damaged or destroyed. The disease can spread, rapidly or slowly, to

cover the entire body surface (universal vitiligo) but this is not inevitable. The most common form of vitiligo appears in symmetrical

form (generalized vitiligo) affecting both sides of the body. In some cases only one half of the body is affected (segmental vitiligo)

and this type has limited progression and is more difficult to treat. Vitiligo can begin at any age, though about fifty percent of people

develop it before the age of twenty.

You cannot catch vitiligo. It is not infectious. Although there are no physical symptoms apart from sunburn in the white patches if

they are not protected from the sun, it can cause severe psychological distress, especially when the face, neck, hands and genitals

are affected. Although the disease is more noticeable on dark or tanned skin the degree of distress is not necessarily linked to skin

color or to the extent of the disease. However, people with dark skin from certain ethnic groups who develop vitiligo may feel

particularly stigmatized and fear a loss of identity should the disease become widespread.

The course of vitiligo is unpredictable. Some people may not notice a change in their condition for many years, while for others it

can spread quite rapidly. In some cases the white patches can spontaneously repigment, particularly in children, though it is rare for

the disease to resolve completely without treatment. http://www.vitiligosociety.org.uk

http://www.vitiligosociety.org.uk/



What Causes Vitiligo? We have some idea of what is happening in vitiligo but are less clear about why it is happening. We know that

pigment cells are not functioning in the white patches although some of them do survive both in the skin and also

in the hair follicles in the white patches. Many theories exist to explain the loss of pigment; the most popular is the

autoimmune theory which means that the body’s own immune system is attacking the pigment cells.

It has also been recently established that genes play an important role in predisposing some people to vitiligo, especially those who

have other autoimmune diseases, in particular thyroid disease, or who have family members who suffer from vitiligo or these

diseases. This discovery strengthens the autoimmune theory.

Other theories which have been proposed include the neuronal theory which suggests that the nerves in the skin are implicated in

the damage to pigment cells and the oxidative stress theory based on the breakdown of anti-oxidant defenses in the skin or in the

pigment cell itself. In addition, high levels of hydrogen peroxide which is toxic to pigment cells have been found in the skin of people

with vitiligo.

It is also recognized that environmental factors such as psychological stress, hormonal changes including puberty and childbirth,

trauma to the skin, and even exposure to certain chemicals may trigger the disease and could play an important role in its

development and progression.

http://www.vitiligosociety.org.uk

http://www.vitiligosociety.org.uk/



Vitiligo Symptoms The main sign of vitiligo is pigment loss that produces milky-white patches (depigmentation) on your skin. Other

less common signs may include:

* Premature whitening or graying of the hair on your scalp, eyelashes, eyebrows or beard

* Loss of color in the tissues that line the inside of your mouth (mucous membranes)

* Loss or change in color of the inner layer of your eye (retina)

Although any part of your body may be affected by vitiligo, depigmentation usually develops first on sun-exposed areas of your skin,

such as your hands, feet, arms, face and lips. Although it can start at any age, vitiligo often first appears between the ages of 20 and

30. Vitiligo generally appears in one of three patterns:

* Focal. Depigmentation is limited to one or a few areas of your body.

* Segmental. Loss of skin color occurs on only one side of your body.

* Generalized. Pigment loss is widespread across many parts your body.

The natural course of vitiligo is difficult to predict. Sometimes the patches stop forming without treatment. In other cases, pigment

loss can involve most of the surface of your skin.



Life with Vitiligo A diagnosis of vitiligo can seem like a life sentence as the unpredictable course of the disease means no-one can be

sure how it will progress and until a cure is found people with vitiligo must learn to live with it. There are, of

course, treatments that can improve the condition, and sometimes this improvement can last for many years. But

there is always the fear that the white patches may return and spread more widely than before.

Most people after they have been diagnosed experience a range of feelings and emotions including shock, denial, anger, fear, guilt,

anxiety, isolation, depression and finally acceptance. A lot of people never get to the last stage and many can become overwhelmed

by low self-esteem and lack of confidence. Some people with vitiligo never really fulfill their potential and many children are teased

and bullied with some reported cases of underachievement at school.

However, vitiligo need not prevent you from doing what you want in life, once you realize it does not have to take over your life and

is only part of who you are. Focusing on your good points and building up your self-esteem will help to put vitiligo in

perspective. Self-confidence, once achieved, should make it easier for you to deal with intrusive staring and rude remarks and go

out in public without feeling ashamed or ugly. Not many people can boost their confidence without help. Although support from

friends and family is essential you may find a course of counseling helpful.

It is not surprising that people stare at the sight of vitiligo because it looks strange and they do not know what it is. They may recoil

because they are afraid of catching it. Explaining what it is can help to dispel their fears but you are not obliged to talk about it. You

are entitled to choose how much or how little you discuss it, especially with strangers. Be prepared with a few simple explanatory

phrases. “It is vitiligo, a condition that affects the pigment cells in my skin. They are not functioning properly or are missing from my

skin and that causes these white patches which can burn easily in the sun if I do not protect my skin. It is not life-threatening and it is

not catching”. Humor is another way of dealing with rude or insensitive remarks. Try to have a few funny remarks up your sleeve to

use when the occasion arises.

Having vitiligo is not a tragedy although the loss of your skin color can also appear to threaten your racial identity if you have dark

brown or black skin. The color of your skin is not the only thing that makes you who you are. Family background and upbringing,

personality, education, cultural and religious beliefs, the country you live in, are more important in defining you as a person.



Vitiligo Corner Posts

2010

Does vitiligo make you feel lonely? 7 January 2010 No Comment

It’s very easy to feel alone in the world even if you’re surrounded by family and friends. It could be the vitiligo that makes you feel

this way, or just your life in general. Maybe it’s not even lonely that you feel, but rather, separateness from people.

I felt this way often when I worked from home. The only time I would be around other people was when I’d get out to run errands.

My choice of work and my lifestyle isolated me from the outside world going on all around me. But, then my life change when I got a

job teaching at a local college, made friends, and began going out with them at the weekend.

It was as if a whole new world opened up to me and happiness flooded into my life. Now, this doesn’t mean that I never feel

isolated. I do. Late at night, just before I fall asleep, issues that I have to deal with creep into my thoughts and I feel scared because, I

feel as if I have to handle them on my own. Then, each morning I awake to the alarm on my mobile alerting me to read an incoming

email. It is from “the universe”.

A few months ago, while at the bookstore, I came across a book by Mike Dooley called, “Notes from the Universe”. Basically, it’s

page after page of messages written as if the Universe was telling you little reminders of the absolute power you have over your life.

I went to the author’s website and signed up for a daily note from the universe to be delivered to me each morning. Here are some

examples:

“Just how much time do you spend thinking big? Good, very good. Because that’s exactly how much of “It” you’re going to get. What

a coincidence. ”

http://www.tut.com/



“When suddenly the unexpected happens, nathalie, it’s always me… just getting everything ready for the time of your life.

Love you, mean it -

The Universe”

“What people rarely give themselves credit for is that their giving continues giving, even after they’ve forgotten giving, and even

when they didn’t know they were giving, forever and ever and ever.

At least I’m keeping score,

The Universe”

“When driving down the road of life, rarely do you know how good you have it, until you see it in the rear-view mirror.

Which is not to suggest that you should look back now, but to remind you that where you are today is more awesome and amazing

than you probably realize.

10-4,

The Universe”

Even after re-reading them to place in this post, I feel a sense of peacefulness and serenity. Note to self: read these notes at night

before bed, too!



First vitiligo world congress 2010 9 January 2010 10 Comments

Today I came across a very exciting announcement. To most people in the world it may seem like just another convention, but for us

with vitiligo, it’s an indication that our voices are being heard, and that there are many, many people out there who truly want to

help find a cure for vitiligo and find a way to better our lives while they work to find that cure.

Dear Friends,

It is a great honour and pleasure for me to chair the FIRST VITILIGO WORLD CONGRESS to be held on September 23-24, 2010 at the

San Raffaele Scientific Institute in Milano.

Why at the San Raffaele Scientific Institute? Because, using the words of its Founder and President, Don Luigi Maria Verzé, “the San

Raffaele complex focuses exclusively on every aspect of man: a blend of soma, intellect and spirit as far as duration and quality are

concerned”, as well as because clinical and basic research are core activities of the Institute.

Why a congress dedicated solely to vitiligo? Because in spite of not being a rare disease, of being classified as a disease by the WHO

(World Health Organisation) and of being one of the most psychologically devastating chronic skin diseases, with a major impact on

both patients and their families, vitiligo is still today underrated and underestimated. Still today there are dermatologists who

minimize the impact of the disease, who trivialize the condition or deceive patients’ expectations, leaving them vulnerable to

therapies not proven effective, often found within the depths of Internet.

In view of the fact that these last ten years have witnessed a growing interest for research and an improved understanding of the

mechanisms regulating the disease, of its genetic susceptibility and of the role played by autoimmunity, this highly intense

conference – the Faculty of which is made up by the most eminent experts in the field – sets itself the goal of becoming an ideal

occasion for an innovative and in-depth analysis of vitiligo.



The Congress is going to focus on recent developments in our understanding of the disease, touching on such different research

areas as genetics, endocrinology, immunology, photobiology and psychology. Old and new therapeutic approaches for vitiligo are

going to be a major issue for debate.

Saturday, September 25, will be dedicated to patients: “Vitiligo, where are we now? Interaction among patients, clinicians and

scientists”. Goal of this event is to allow patients to play an active role in the field of research and to provide them with more

information on existing therapies.

With the hope that each one of You would make his own contribution to this Congress I send you my best regards,

Prof. Santo Raffaele Mercuri



VITILIGO 2010: WHERE ARE WE NOW?

INTERACTION AMONG PATIENTS, CLINICIANS AND SCIENTISTS

Milano, September 25th, 2010

General Information

This meeting is realised in co-operation with ARIV (Associazione Italiana Ricerca e Informazione per la Vitiligine), a patient-driven,

non-profit organisation based in Italy, representing the interest of those affected by vitiligo. Its aim is to improve the quality of life of

patients and family, helping them to cope with the disease and its disfiguring unpredictable skin changes.

The First Vitiligo World Congress is a good opportunity to open new communication channels: patients will have the chance to work

in partnership with investigators, clinicians and healthcare professionals, interacting with members of the international vitiligo

scientific community.

Moreover, patients will have the opportunity to assume an active role in participating and encouraging present and future research.

Congress Venue

San Raffaele Congress Centre

Via Olgettina 58 – 20132 Milano

Italy

Organising Secretariat

San Raffaele Congress Centre

Via Olgettina 58 – 20132 Milano – Italy

Phone +39 02 2643 3725



10 Comments

william crump said:

I have vitilligo for 3yrs., and I hate it. The public looks at me like I’m a monster, we need to get the word out so the public will be

educated and aware of this skin disorder.

Help us we need a cure.# 17 February 2010 at 8:39 am

susana said:

i have vitiligo for 25 yrs, since i was 8 yrs old. Its been really difficult for me specially because i live by the beach. I have never worn

shorts or even a dress, im just to embarrased. A few years ago i got tatoos over my feet just so i could wear sandals and feel

comfortable. I tried every thing form make up to tanning beds and it just looks worst. we need help!# 16 March 2010 at 6:51 pm

Susana said:

A quick question- When you tattooed you feet vitiligo, did it work? I have a few spots on the back of my hand and considering to

cover it with tattoo? Any advice based on your experience?

# 17 March 2010 at 5:13 pm

Unknown said:

I would like to thank you for your care to finding a cure for vitiligo. My partner has been struggling with the disorder for 4yrs and it

has not been easy. Please help our loved by finding a cure# 17 March 2010 at 5:19 pm

Sam said:

Submit vitiligo resources (Vitiligo Products, Vitiligo Clinics, Vitiligo Treatments, Vitiligo Websites, Vitiligo Support Groups) at Vitiligo.

It is the only vitiligo directory.# 12 April 2010 at 4:40 am

http://vitiligocover.com/first-vitiligo-world-congress-2010/?cid=5484





http://www.vitiligo.biz/



kaelen said:

Hi!

I’m glad that there’s more and more attention drawn to this disease. I myself have vitiligo since I’m a little kid. As I was a kid, this

was a big issue for me, because of my brother who enjoyed calling me big ugly panda or cow… My knees and eyelids were the worst.

I’m now 26yrs old, and the big spots on my knees have disappeared since a couple of years, but I’m now having more and more little

spots all over my arms and legs…

I hope there will be more and more interest, so people, and most importantly children with vitiligo, can be helped and treated!# 14

April 2010 at 8:59 am

joel said:

ei nice news! the 1st Congress of vitiligo thats good..

I have vitiligo.. we just got to be strongs… I will start one new treatment, maybe get lucky this time!# 24 April 2010 at 9:11 am

Kaushik said:

i have vertilogo for past 15 years and its spreading…..i am in love with one girl but could not express my feelings because i am

worried she will reject me for this desease plz suggest some thing so that one morning i woke up and see myself free from vertilogo.

Basially its due to the mutation on cromozome 17# 26 May 2010 at 3:40 am

RA said:

Hi Kaushik,

Thats interesting, I didn’t know vitiligo had something to do with a chromosome mutilation. There are several treatments that work

for people but there is no magical cure. The treatment that has worked for most people, including me, is a combination of vitamins

and nb uvb and sometimes natural sunlight. My face has repigmented 100% and the other areas are starting to freckle in. Hopefully

the pigment will last. Hope this helps!# 26 May 2010 at 6:00 pm







Can forgiveness cure vitiligo? 17 January 2010

No one knows the exact cause of vitiligo, and there are many theories as to why it manifests. We can all agree that who ever gets

vitiligo has a particular gene which predisposes them to it, but is the catalyst simply the predisposition, a chemical reaction, or is

there an emotional connection? Perhaps it is any of the 3, or a combination, depending on the individual.

Let’s look at the emotional connection. This one is pretty easy to determine whether or not it applies to you. Did your vitiligo

manifest after a stressful event, either physical or emotional? Or perhaps you led an emotionally stressful life and then one day you

began noticing the white patches?

If you answered yes to either of those, maybe the cure for your vitiligo lies in simply forgiving either yourself or others for events

that caused you stress.

Personally, there are many situations that have occurred throughout my life that I need to forgive myself for how i responded to the

situation. Nothing illegal, mind you, it’s just that in many situations I did not stand up for myself, and i still hold a bit of shame and

anger. You know, the old “why didn’t I say this” or “why didn’t I just do that”, self punishment.

Forgiveness. It’s much simpler to forgive someone else than it is to forgive ourselves. I don’t hold grudges towards the people

involved in situations that still anger me. So why do I keep a grudge against myself? Why can’t 40 year-old Nathalie forgive 16 year-

old Nathalie for not sticking up for herself? After all, what I knew about life at 16, is nothing compared to what I know now. It’s time

to forgive myself.

I found a great set of tools to help in this quest while listening to a podcast in which self forgiveness was the topic. The guest was

Carl Tipping and he talked about his workshop and discussed methods to forgive. What I liked most about his methods is that you

don’t have to conjure up and relive every stressful event that is still bothering you. Here is a link to his site where you can find all of

the tools.

Hey, and even if it doesn’t cure your vitiligo, you’ll at least lead a happier life

http://www.talkshoe.com/talkshoe/web/talkCast.jsp?masterId=44413&cmd=tc

http://www.radicalforgiveness.com/contentnew/online-tools.asp



2 Comments anon said:

Hi Nathalie,

I agree with your stance. I believe an accumulation of anxiety and regret can lead to an unhealthy state mentally and physically in

anyone. Since Vitiligo may be sensitive to stressful situations, we need to constantly remind ourselves to focus on the silver lining

amidst these often gloomy clouds of our past and that await in our future. Stay positive Nathalie!# 19 January 2010 at 12:48 am

http://vitiligocover.com/can-forgiveness-cure-vitiligo/?cid=5351



Vitiligo treatments: nbUVB and pimecrolimus 24 January 2010 No Comment

A study performed by researchers in Iran concluded that nbUVB vitiligo treatments are more successful when associated with topical

immunomodulators (Elidel, Protopic).

“Sixty-eight patients with vitiligo enrolled in this randomized, double-blind, placebo-controlled study. The patients were randomized

into two groups and treated with NB-UVB plus either pimecrolimus or placebo for 3 months. Tri-weekly radiation was started at 280

mj/cm2, with 15% increments for each subsequent treatment until erythema was reported or a maximum of 800 mj/cm was

achieved.

At baseline and 6 and 12weeks after commencement of therapy, vitiliginous patches were measured. Fifty patients completed the 3-

month study. No significant side effects except self-limited erythema and pruritus were observed.

After 12weeks of treatment, repigmentation of the facial lesions was higher in patients treated with combined pimecrolimus and

NB-UVB compared with the placebo plus NB-UVB group (64.3 vs 25.1%) (p 0.05%). There was no statistically significant difference in

the repigmentation rate between the two groups on other body areas,” wrote I. Esfandiarpour and colleagues.

Their findings tell us that a vitiligo treatment should be dependant on the body area where the white patches are located. While

tacrolimus may be used effectively on the face (with or without UVB) it’s efficiency in other areas (feet, elbows, hands) is limited.

SOURCE

Study results from I. Esfandiarpour and colleagues in the area of vitiligo. Drug Week. Atlanta: Mar 27, 2009. pg. 1223



Iran ‘revolutionizes vitiligo treatment’ 15 February 2010 9 Comments

Iranian Scientists with the Royan Research Center have successfully treated a skin disease using patients’ own pigment producing

cells.

Saeed Shafiyan, a dermatologist with the research team, has told IRIB that the new technique removes vitiligo lesions in less than 6

months, much shorter than other available methods.

He explained that in this technique melanocyte cells were taken from an intact area and injected after the epidermis layer was

separated. In this technique, there is no need to abrade the skin or expose the patient to ultra violet radiation.

The researcher said two third of vitiligo patients are cured using available treatments while the new method is believed to be

promising in the remnant one third.



9 Comments RA said:

This is exciting! I wonder if it will be available in Canada any time soon…# 15 February 2010 at 1:39 pm

alex said:

Great news Nathalie!!!!!!!!!!!!!!# 16 February 2010 at 7:16 am

Atul said:

Really Great!

When same will be available in other countries like India…# 17 February 2010 at 3:21 am

healvit said:

It’s been 2 years since they claimed they’ve found a ‘cure’. I don’t know how much longer we gonna wait…I hope it’s not another

useless speculation like the ‘chickpea’ and ‘black pepper’ and so no ‘cure’.# 17 February 2010 at 8:11 am

healvit said:


useless speculation like the ‘chickpea’ and ‘black pepper’ and so on ‘cure’.# 17 February 2010 at 8:11 am

christophe france said:

Last time there was a cure wiht black chickpeas in india. I have tried to est chickpeas and some very feew spots overcome. Now

there is something extraordinary in Iran…can we believe it?

I wrote IN AUGUST 2009 to the french Ministry of Health but she never ansmered to my proposal to recognise this “disease” such as

an handicap and to benefit of the special advantages for companies who hire enabled people as it is realized in Portugal I believe.# 5

March 2010 at 8:08 am

http://vitiligocover.com/iran-revolutionizes-vitiligo-treatment/?cid=5472








kelm said:

This is not new, this has been done in Sweden years ago.# 8 March 2010 at 12:52 am

Rajeev said:

Hi,

Is this available in India? and who are the contacts in Iran and what is the cost of the procedure.

Please revert back if there is any moderator of the article also.

Regards,Rajeev# 13 May 2010 at 10:07 pm

Bruce said:


useless speculation like the ‘chickpea’ and ‘black pepper’ and so no ‘cure’.

# 19 May 2010 at 9:20 am






Teen model’s vitiligo campaign 23 February 2010 2 Comments

A BEAUTY pageant finalist from Harpenden is using her newfound fame to raise awareness about the chronic skin disorder she

suffers from.

Abigail Rose, aged 14, of Hillside Road, was talent scouted for the Teen Princess UK pageant at the Clothes Show in Birmingham last

December and after having successfully got through the first round, she is now in the final heats of the competition.

St George’s Secondary School pupil Abigail, who lives in Hillside Road, entered the pageant to raise awareness about vitiligo, a

condition she has suffered from for nearly 10 years which causes the skin and sometimes the hair to turn white in patches.

Abigail, who is a keen supporter of the Vitiligo Society, said that the pageant was the perfect opportunity to spread the word: “What

better way to give vitiligo publicity than to be in a competition like this? One of the biggest parts of dealing with the condition is the

feeling of being the only one and I can help people with that.”

She added: “It’s very nerve-wracking being in the Teen Princess Pageant but all my friends and family are being very supportive and I

enjoyed the professional photo shoot.

“Hopefully I will get lots of votes from the public and I will make it through to the final.”

Abigail, who recently addressed the Vitiligo Society’s Medicine and Me symposium at the Royal Society of Medicine, is greatly

involved with the Vitiligo Society and manager of the charity Jennifer Viles said that she was pleased to have Abigail on board.

“We are very proud to support Abigail to reach the final of the Teen Princess Beauty Pageant. By supporting Abi we will all be

showing the world that having vitiligo stops noone from being successful and beautiful.”

Abigail currently has just under 150 public votes and to help her get through to the live finals in August, you can text Abigail Rose to

84205 or telephone 0901 656 153009 then enter 09.

published 25 January 2010

http://www.hertsad.co.uk/content/herts/news/story.aspx?brand=HADOnline&category=News&tBrand=HertsCambsOnline&tCategory=newslatestHAD&itemid=WEED25%20Jan

%202010%2012%3A15%3A14%3A897

http://www.hertsad.co.uk/content/herts/news/story.aspx?brand=HADOnline&category=News&tBrand=HertsCambsOnline&tCategory=newslatestHAD&itemid=WEED25%20Jan%202010%2012%3A15%3A14%3A897

http://www.hertsad.co.uk/content/herts/news/story.aspx?brand=HADOnline&category=News&tBrand=HertsCambsOnline&tCategory=newslatestHAD&itemid=WEED25%20Jan%202010%2012%3A15%3A14%3A897



2 Comments Olga Medina said:

God bless you having this event. I suffer from Vitiligo and would like updates. Please advise. Thank you.# 23 February 2010 at 6:58

pm

Barno said:

Please help me, I have long been sick vitiligo, as I recover from the disease.

I have three children, I am very happy.

But my illness will not let me be happy.

# 15 April 2010 at 5:09 am

http://vitiligocover.com/teen-models-vitiligo-campaign/?cid=5506

http://vitiligocover.com/teen-models-vitiligo-campaign/?cid=5620



st. louis vitiligo support group meet-up 27 February 2010 One Comment

If you live in or near st.louis, missouri, we are planning a meet-up in april, 2010, and we would love for you to join us.

For the lastest information about our get-together, please join us on facebook.

http://www.facebook.com/?sk=messages&tid=1396268865924#%21/group.php?gid=105645777767



One Comment Lloyd Jacobs said:

I am very interested in joining the STL Vitiligo Group. I am an active 79 year old widowed man who lives in Chesterfield. Play several

rounds of golf during the week and use tanning lotions to blend the white blotches on my face. I have a naturally dark color to my

skin and noticed this condition initially when I was in the military in Heidelberg, Germany in the early fifties. My wife kept me

stocked with Revlon Colorstay and I continue to repurchase as needed.

During the summer, lighter dinner jackets seem to emphasize the vitiligo condition…Best Regards!# 1 May 2010 at 8:34 am

http://vitiligocover.com/st-louis-vitiligo-support-group-meet-up/?cid=5676



Skin transplant offers hope for vitiligo 12 March 2010 6 Comments

Henry Ford News

Skin Transplant Offers New Hope to Vitiligo Patients

March 9, 2010

CONTACT: David Olejarz

[email protected]

313.874.4094

Skin Transplant Offers New Hope to Vitiligo Patients

Before and After Photos available at www.flickr.com/photos/hfwbh/

DETROIT – In the first study of its kind in the United States, Henry Ford Hospital showed that skin transplant surgery is safe and

effective for treating vitiligo.

Henry Ford researchers followed 23 patients for up to six months after surgery and found that the treated area regained on average

52 percent of its natural skin color. In eight patients with a specific type of vitiligo, the treated area regained on average 74 percent

of its natural skin color.

The surgery involves using skin cells taken from normally-pigmented areas of the body and transferring them to the damaged area of

skin. It is performed under local anesthesia.

“This surgery offers hope to vitiligo patients,” says Iltefat Hamzavi, M.D. a senior staff physician in Henry Ford’s Department of

Dermatology and the study’s senior author and principal investigator. “The results achieved in our study were of obvious significance

to our patients.”

The study will be presented Tuesday, March 9 at the 68th annual American Academy of Dermatology meeting in Miami.



While the initial results are preliminary and the procedure is still investigational, Dr. Hamzavi says Henry Ford hopes to offer the

surgery as part of its treatment portfolio this fall. He says for some patients the surgery is more effective than standard treatments

like light therapy and topical medications.

“Patients of color and those with vitiligo on one side of the body and in one area of the body may benefit most from this procedure,”

Dr. Hamzavi says.

Vitiligo is a skin disease that causes the skin to lose color and develop white patches that vary in size and location. It affects about 1

in every 200 people in the United States, and is more noticeable in people with darker skin.

Vitiligo develops when cells called melanocytes are killed by the body’s immune system, causing the area of skin to turn white

because the cells no longer make pigment. While there is no cure, vitiligo can be treated and managed with light therapy, creams

and topical medications.

The surgery is known as melanocyte-keratinocyte transplantation or MKTP, and is performed in Europe, Asia and Middle East. It was

performed at Henry Ford using the same technique developed by MKTP pioneer Sanjeev Mulekar, M.D., of the National Vitiligo

Center in Saudi Arabia. Henry Ford is the first to perform MKTP in North America.

In Henry Ford’s study, 32 patients (18 male, 14 female) underwent surgery and ranged in age from 18 to 60. A total of 40 MKTP

procedures were performed and researchers analyzed the outcomes of 29 of them. A procedure lasted 30 minutes to two hours and

patients returned home the same day.

Of the 32 surgery patients, 23 were followed for up to six months after surgery. Eighteen patients received one treatment, four

patients received two and one patient received three. The ethnicity of patients was Caucasian, South Asian, African American and

Hispanic.

During MKTP, melanocyte cells, which produce pigment in the skin, hair and eyes, are harvested from an area of healthy skin and

separated to make a skin cell mixture. This mixture then is applied to the treatment area and covered with a specially developed

adhesive biologic dressing.



Treated areas included the hands, arms, legs, feet, face and stomach. The average size of the treated area during each procedure

covered an area of 46 cm2, or roughly the size of a credit card.

The study was collaboration with the National Center for Vitiligo, Riyadh, Saudi Arabia, and funded by the Shahani Foundation based

in Michigan.



6 Comments Mary said:

wow wow wow…this is very exciting for all of us!! We are finally seeing light at the end of the tunnel. It seems more and more

countries are advanceing themselves in performing this procedure. This is so great for those of us that live in the U.S. and Canada.

I have only had Vitiligo for one year. I used to get up in the morning an feel scared about my future and wonder what I will look like

in 10 years.

Not anymore, everyday it seems that I read about a new advancement in treating this disease. I’m not scared anymore, I wake up

with hope now.

I’m so thankful to people like Natalie and others who take the time everyday to find this information for all of us. It relieves some of

the stress that we all carry and that may make our Vitiligo spread.

I,m so grateful for this site.

God Bless.

Mary# 12 March 2010 at 6:33 pm

jake said:

Its coming Mary … I can smell it i never got excited about treatments till now..this made me feel the same way u did.. finally my mind

is at peace a little and it doesnt feel like im having a heart attack anymore haha.. to excited for words# 13 March 2010 at 3:19 am

Sermin said:

One time completely and 2 times at least %90-95 in my areas I could manage the regain my color back they all came back once I gave

up sun bath and psorolen pills. So I don’t know what to think with the rate of success but seemed to me again like primary school. I

recently consider IV Glutathione what will shade the difference by whitening the rest of my skin complexion. I don’t mean that is

nothing but we could get around %75 with PUVA, narrow band did nothing to me just emptied my pocket and wasted time. The best

I found is psorolen pills and sun bath but need to be done for at least 2-4 months and carefully without exceeding time more than 1

minute each day, 3 days in a week. I have never get any advice by derm. to do so but never every get any little progress by doing

http://vitiligocover.com/skin-transplant-offers-hope-for-vitiligo/?cid=5568





what they wanted me to do maybe only because they can not empathize every individuals situation and can not make sure how

serious we may apply sun bath with extreme care so..# 13 March 2010 at 10:04 am

Bamsegutt said:

This treatment is not new it has been in Sweden for many years and some other countries has catch up , it is in India too. First off all

your vitiligo must be stabile other wise it is easy that it will be attacked again, even if the transplantation takes some hours , the

pigment comes gradually after some months.

It is indeed a good progress. # 16 April 2010 at 5:38 am

Tina said:

I have had vitiligo for 4 years. It hasn’t really bothered me and I’ve done nothing about it. But now I’m concerned because it is

starting to show up on my face.

I’m looking into buying a untraviolet UVB handheld wand. I have a couple of questions:

Is this ok to use on face?

Do you have any recommendations of where to buy the wand?

Thanks!

Tina# 22 April 2010 at 10:54 am

Charlotte Wright said:

my dad recently got a Hair Transplant, it was very expensive but the results are worth it…;# 19 May 2010 at 4:37 am






Dr.Oz show, promising vitiligo concealing method 21 April 2010

On April 13, 2010, the Dr. Oz did a segment about a new method to conceal vitiligo called Microskin. The special guest with vitiligo

was Tracy Edwards, a 47 years old woman. Her vitiligo began when she was 34 after she gave birth to her son Timothy. She

explained that every time she looks in the mirror she feels like a monster and that she is ashamed to show her face because people

stare at her whenever she goes out.

Dr Roy Geronemus treated Tracy’s vitiligo with a new procedure called Microskin which is like a second skin to match her own. It

doesn’t require makeup, it won’t come off in the shower or while swimming, but it only lasts a few days.

Micro Skin of New York donated one year of the Micro Skin product to Tracy for one year.

What is Microskin?

Microskin is a simulated second skin which is formulated individually to color correct skin conditions. It is a light liquidized

application which is applied on to the epidermis (top layer of skin). Microskin is not a cream, and doesn’t have the makeup

appearance like other camouflage products. Once applied, Microskin is durable, flexible, and it won’t rub off on clothing or linen. It’s

waterproof and allows your skin to breathe. Microskin is suitable for all genders and skin types.

http://www.microskincenter.com/



Hypochlorhydria, vitiligo connection? 3 May 2010 6 Comments

A few people have brought up a theory that Hypochlorhydria may be what triggers the vitiligo gene to turn on. And while I hear

many ideas on the potential causes of vitiligo, this one fits many issues that we’ve already linked to it: b12 deficiency, low folic acid,

hypothyroidism, autoimmune disorders, just to name a few.

For the next few days I am going to do a series of posts about the online research i’ll be conducting on hypochlorhydria.

What is hi-po-klor-hi-dree-uh? Basically, it’s just low stomach acid. Well, that sounds harmless enough, doesn’t it? But it’s not.

It is commonly assumed that the decline in stomach acid production observed through later adult life is normal and a very common

consequence of the aging process. Recent evidence, however, shows that this is incorrect. The cells that produce stomach acid, also

known as hydrochloric acid or HCL, are the parietal cells. Several things can affect the ability of the parietal cells to produce

hydrochloric acid. A partial list includes: regular use of non steroidal anti-inflammatory drugs (NSAIDs); acid blocking medications

(often used for symptoms that are actually due to a lack of HCL); nutritional deficiencies such an histidine (an amino acid), zinc, and

vitamin B1 (thiamine), all of which are needed for HCL production. Stress can also impair HCL production as well as alcohol

consumption and food allergens. In addition to HCL, the parietal cells also manufacture “intrinsic factor” which makes the

absorption of B12 possible. Without adequate intrinsic factor, a B12 deficiency sets in and can result in pernicious anemia.

Once the stomach acid is low, you may be more susceptible to infection by Helicobacter pylori, a common cause of ulcers. This

chronic bacterial pathogen in humans is so prevalent that 50% of 50 year olds are infected with H. pylori. (Plummer, Dr. Nigel,

Townsend Letter, July 2004. It is also important to remember that if you don’t make enough HCL to disinfect and kill off bacterial and

parasites in your food, you may also be more prone to gut infections and small intestinal bacterial overgrowth and malabsorption.

HCL is not only necessary for proper digestion (it begins the breakdown of protein) and thus nutrient absorption, but it also kills

many organisms and helps to keep the stomach sterile.

Most people don’t have too much stomach acid as you would think from watching the pharmaceutical commercials on TV. By taking

antacids, you will have less stomach acid being secreted setting you up for infection and malabsorption.



A partial list of symptoms associated with low stomach acid includes the following:

Gas shortly after eating Allergies Autoimmune disorders Thyroid disorders Diabetes Mellitus Gallbladder problems Asthma Vitiligo Acne rosacea Chronic Hepatitis Indigestion ½ to 1 hour after eating that may last 3-4 hours Constipation Belching Diarrhea Bloating

Weak Adrenals Rheumatic Arthritis Hypoglycemia Dry Skin Chronic Fatigue Bad Breath Weak Nails Poor night vision Lupus erythematosis Loss of taste for protein foods

If you have symptoms of low stomach acid, you will want to take HCL as Betaine Hydrochloride. In all cases, it is prudent to begin

supplementation in steadily increasing levels. If a capsule contains 500 mg. of Betaine Hydrochloride, then an individual should start

with one capsule per meal and then build up to 3 capsules per meal. Sometimes you may need to take even more than 3 if you are

extremely low in HCL. You can increase until you get a burning sensation and then you know you need to back down but it is a good

idea to have some Alka Seltzer on hand.

There are several good brands of Betaine HCL on the market. I have two that I use in my clinic—Premier Research Labs has 2

products to be used together, Quantum HCL Activator with Quantum Betaine HCL; and Biotics Research Labs has Hydrozyme. It is

best to take these products in the middle of each meal. Make sure you consult your nutritionally oriented physician prior to

supplementing with HCL.



If your doctor does lab work and finds you have an infection of H. pylori, the University of Wolverhampton in Great Britain has found

that 3 different strains of H. pylori were highly sensitive to some mixtures of essential oils, particularly oregano, clove, wormwood

and ginger. Following the release of this data, Pharmax developed a product Pyloricin, containing the same mixture of oils. In

addition, in this product, the oil mixture is emulsified so that once it is in the stomach, it produces a milky emulsion enabling the

antimicrobials to effectively disperse and penetrate the mucous layer and attack the surface and deep layers where H. pylori bores

in.

Other companies that produce therapies for H. pylori are: Metagenics’ Zenlori, Allergy Research with Mastica, and Biotics Research

Labs with Bio-HPF. Studies published in the New England Journal of Medicine have shown that mastic gum inhibits H. pylori at very

low concentrations and that it was effective against at least 3 different strains of H. pylori. (N Engl J Med, 339 (26): 1946 Dec 1998.

For all problems dealing with the gut, I recommend taking probiotics such as Bifido bacteria and Acidophilis bacteria. You can check

with your local health food store for a suitable brand.

In conclusion, most digestive dysfunctions start in the stomach with decreased HCL. HCL is one of the most difficult chemicals for

the body to make and, the loss of which, sets us up for multiple problems such as an inability to break down our food properly for

absorption. Without proper digestion, we cannot obtain the nutrients from our food which can then make us more prone to

multiple health problems and disease.

http://findarticles.com/p/articles/mi_m0ISW/is_252/ai_n6160495/



Comments cheryl planert said:

Great article and I appreciate you having done the work of finding good products. That’s always at least half the battle. Certainly this

therapy is worth a try; t is easy and relatively inexpensive with the greatest expense being some burn, a sign to cut back. Thank you

for going to the time and trouble.# 4 May 2010 at 7:37 am

VEN said:

Natalie,

I have Acid-Reflux as well and I am not sure if Hypochlorhydria has some connection to that. Let us know if we can check with some

research team or any Doctor.

Regards# 4 May 2010 at 12:27 pm

Mary said:

It’s so strange, I was just reading about this online the other day.

There was a study done in the early 1940’s I believe, where the doctor firmly believed that low stomach acid was the cause of

Vitiligo.

He himself, had vitiligo and was able to supposedly “cure” himself of it.

He recommended that anyone with Vitiligo take 1 tsp of cider vinegar per day, which will increase your stomach acid levels.

Another thing is that I have really bad breath at certain times, not all the time. I’m very strict with dental care, it’s not from my

mouth, I believe it’s from my gut. My cousin who has vitiligo also suffers from the same ailment.

Does anyone else out there with Vitiligo have the same issue?# 5 May 2010 at 8:25 pm

ishara said:

hi there

http://vitiligocover.com/hypochlorhydria-vitiligo-connection/?cid=5699






My vitiligo has worsened recently and i have been trying to find ways of curbing the spread. I am on meds (topical application with

daily exposure, night cream and daily tablets).

The new spot on my face has repignmented – and I am also now taking kalawalla – started a few days ago.

This article is so helpful, as I have been a long suffering with many of the above symptoms – regardless of what i eat – i have gas,

bloating – i have allergies and asthma – my mom is completely depigmented and in addition to eh above has diabetes and

hypothyroidism..# 7 May 2010 at 9:18 am

Mary said:

Does anyone have any concerns about “Elidel”and the FDA box warning?

Does anyone have any data relating to the cancer risk?# 14 May 2010 at 8:35 am




Pigment disease ‘reduces cancer risk’ No Comment

Published Date: 23 April 2010

People with vitiligo “may have natural protection against skin cancer”, according to BBC News. The condition, which causes pale skin patches

due to a loss of pigment, was previously assumed to increase the risk of serious skin cancers, such as malignant melanoma.

The study looked at 1,514 people with vitiligo and 2,813 without the condition. The researchers identified several genetic variations associated

with an increased risk of vitiligo. Two of these variations were also associated with a reduced risk of

melanoma, and several others were located in regions containing genes known (or thought) to play a role in other similar immune conditions,

such type 1 diabetes and rheumatoid arthritis.

The most important finding of this study was the identification of genetic variations associated with vitiligo. The suggestion of a link with

melanoma will no doubt prompt further research, but at this stage it is too soon to say if these findings have major implications for melanoma

risk in people with vitiligo. The researchers themselves warn that people with vitiligo should still be careful in the sun as they can sunburn

quickly, and even a reduced risk of melanoma does not mean that there is no risk.

Where did the story come from?

This study was carried out by Dr Ying Jin and colleagues from the Human Medical Genetics Program at the University of Colorado School of

Medicine, along with international researchers, some of whom were based at universities in Sheffield and London. The study was supported by

grants from the US National Institutes of Health and a grant from the Anna and John Sie Foundation. The study was published in the peer-

reviewed New England Journal of Medicine.

This research was covered by BBC News, which reported both the strengths and limitations of the study and correctly placed little emphasis on

suggestions that the finding could quickly lead to new treatments.

What kind of research was this?This was a genome-wide association study in which the researchers wanted to identify the areas of the genetic

code (called susceptibility loci) associated with generalised vitiligo. The condition involves patchy loss of colour in the skin and hair, caused by

the body attacking its own pigment-producing cells (melanocytes). While vitiligo is thought to be partly triggered by environmental factors, the

condition is also known to be partially caused by genetics.



The researchers already had an idea of which sections of DNA to examine as previous studies have suggested several potential loci. In addition,

patients with generalised vitiligo often have other autoimmune diseases, such as autoimmune thyroid disease, rheumatoid arthritis, psoriasis

and adult-onset type 1 diabetes. This suggests that these diseases have shared genetic components.

The research involved genotyping. This is a process of scanning the genetic code found in sections of DNA. In their genotyping, the researchers

looked at single-letter variations (579,146 variants or single-nucleotide polymorphisms [SNPs]) across large areas of the genetic code in 1,514

patients with generalised vitiligo.

The results of this genotyping were compared with publicly available control genotypes from 2,813 healthy people. All those tested were of

European white ancestry. The results were then confirmed by comparing them to a second set of samples.

What did the research involve?

The researchers took samples of DNA from 1,514 patients from North America and the United Kingdom who met the clinical criteria for the

diagnosis of generalised vitiligo. The genotype data from these patients were compared with the genetic sequences of 2,813 control participants

drawn from datasets stored in a US database, known as the National Institutes of Health Genotype and Phenotype database.

The researchers assessed how common the different variants (alleles) were at each of the 579,146 genetic sites assessed, looking to see whether

any variants were more common in people with vitiligo than in those without it. They also assessed the degree of association (how much more

common the variant was) and the probability that any associations could have arisen by chance.

After the researchers had assessed which SNPs were associated with vitiligo, they repeated the analysis, focusing on these SNPs in two

independent “replication sets”. These are different sets of samples and are typically used in this type of study to test the reliability of specific

SNP associations found in the first analysis.

The first replication set included 677 unrelated patients with generalised vitiligo and 1,106 controls. The second replication set featured a family-

based cohort of 183 samples from families where parents and offspring were affected by vitiligo and 332 samples from families with two or

more affected family members and their unaffected relatives as controls. These sample sets were tested for the presence of 50 SNPs in nine

chromosomal regions that had the strongest associations with generalised vitiligo.

The research was well described and conducted. The use of replication sets increases the reliability of the findings. Also important in these types

of study are the quality-control procedures used to ensure that processes, such as DNA purification, are carried out correctly. These procedures

were described extensively in supplementary material.



Informed consent was obtained from all the study participants.

What were the basic results?

The researchers found that nine chromosomal regions contained SNPs associated with generalised vitiligo. The acceptable levels for statistical

significance in genome-wide association studies are higher than in other types of study, which reflects the fact that they can involve numerous

statistical tests that can increase the likelihood that an association will be found by chance. All associations in this study were reported at the

significance level of p less than 5 × 10-8, which means it is highly unlikely they occurred by chance.

The associated SNPs mainly lay in regions that have previously been associated with other autoimmune diseases. The most strongly associated

SNPs lay in the region called the major histocompatibility complex, which contains genes important for the immune system. The other regions

previously associated with other autoimmune diseases contained the genes PTPN22, LPP, IL2RA, UBASH3A and C1QTNF6. Two other associated

regions contained additional immune-related genes, called RERE and GZMB, and one associated region contained the gene TYR.

Two of the associated SNPs in the region containing the TYR gene had previously been associated with susceptibility to malignant melanoma.

However, the variants associated with increased risk of vitiligo were also associated with reduced risk of malignant melanoma.

Most of the 50 SNPs tested in the two replication sets showed significant association with vitiligo in at least one of the sets. All nine regions

where these SNPs were found featured the same associations observed in the first set of samples.

How did the researchers interpret the results?The researchers concluded that they had identified genetic variants associated with generalised

vitiligo in multiple chromosomal regions, suggesting that multiple genes are involved in susceptibility to this condition. They say that the genes in

some of these regions have been associated with other autoimmune diseases, and variants in another region may be associated with both an

increased risk of vitiligo and a reduced risk of melanoma.

ConclusionThis study is one of the first to comprehensively establish areas of genetic code that may be involved in development of generalised

vitiligo. The researchers comment that their study shows little agreement with the associations reported in previous studies.

They say that the loci identified in this study together account for about 7.4% of the total genetic risk for vitiligo and that, although this is small,

their study is an important insight into the condition.

The suggestion that increased risk of vitiligo is accompanied by a reduced risk of malignant melanoma is a puzzling result of the study, but at this

stage it is too soon to say if this means anything. It will take further research to understand this genetic association and how it relates to the risk

of skin cancer for those with vitiligo. Regardless, everyone, including people with vitiligo, should avoid getting burnt by the sun.



found on: http://www.sheffieldtelegraph.co.uk/nhscancer/Pigment-disease-39reduces-cancer-risk39.6248748.jp

Last Updated: 22 April 2010 11:09 AM

Source: NHS Choices

http://www.sheffieldtelegraph.co.uk/nhscancer/Pigment-disease-39reduces-cancer-risk39.6248748.jp



Vitiligo repigmentation success 18 Comments

It is my great pleasure to share with you some fantastic repigmentation results sent in by Bryn.

Hi everyone

Here are the photos of the recent repigmentation in one of my patches of vitiligo on my inner thigh. I used Ginkgo Biloba combined with ground

piperine (using E45 as a Base Cream) and also using Narrow Band UVB handheld lamp.

This regimen appears to work for me, but obviously you all need to assess what risks you are prepared to take to achieve re-pigmentation. Also,

its impossible for me to say with any certainty whether the Ginkgo is doing the re-pigging or indeed any of the others, or it may be a combination

of therapies which work well together.

I think the 3 methods I use are the most natural I could use (apart from the UVB which you could replace with natural sunlight I suppose)

If anyone else is taking photos of their progress, I think it would be a great moral boost to other sufferers to see some photos of progress that

people have made, so don’t be shy and show off your re-pigmentation.

Regards

Bryn



18 Comments » Mary said:

Has anyone heard of “ReCell”?

Here is the link http://www.avitamedical.com/index.php?ob=1&id=1

This sounds amazing.

let me now what all of you think.

# 3 August 2010 at 10:06 am

*

Jon said:

Am I crazy? The lower picture looks slightly worse than the upper..

# 1 September 2010 at 4:20 am

*

lee ha said:

Jon, you not crazy I feel the same way


*

zz said:

hi what picture looks worst then upper one??




*

lee ha said:

the bottom pic looks worst to me


*

Nathalie Pelletier vitiligocover.com (author) said:

man, you guys are making me work this morning, lol. i have re-posted the photos so that you are now able to click on them for an enlarged

image. it is a bit difficult to discern the new pigmentation, but as someone who has experienced repigmentation, i can see that the after photo is

correct. it is the subtle darkening around the edges that is the tell sign. :)


*

Mary said:

there is definitely re pigmentation happening.

Hey Bryn, any new developments?


Lee Ha said:

Hi Nat, I work at CDC as their computers support person. Sorry for the late response.

# 1 September 2010 at 12:12 pm

*



Lee Ha said:

Hi Nat, I like to post my version of before and after pics of my treatment can you give me your email address or tell how to uploaded the

photo on here.


*

zz said:

hi lee ha

what treatment are you doing now???i need abit of help because it on my face and the hair grow out its white..please help.. thanks


*

Lee Ha said:

for ZZ,

I see big improvement my spots almost completely gone!!! for the last five month I don’t eat any red met, spicy food, and beer. I ate lots of

veggie all types of veggies 80/20 80% veggies and 20% white meat or fish with Omega only. I drink carrot juice twice a day in the morning and

before bedtime. for vitamins i’m taken vitamin e,d,folic acid,L-Phenylalanine,flaxseed,zinc,cooper,b-12 and b-complex. I also using protopic twice

a day and narrow band uvb twice a week. I drink water like crazy hope this help you little bit. my email is jut9a(insert the @ sign here)cdc.gov

send me the email and I will send my before and after pics to you.


*



Lee Ha said:

ZZ, i have reply back to you a long list of things to do but I guess we have to wait for Nat to release them since she oversee the site. I guess

once you write a long note she has to check it before it become available.


*

MA said:

How do you make your cream with (Ginkgo Biloba combined with ground piperine (using E45 as a Base Cream). Did you buy a powder form

of peperine and ginkgo biloba, where did you get it? Do you mix it evertime you use it or do you make a batch? Or do you take some pill for

peperine and ginko biloba? Thanks




Vitiligo solution near with Avita’s “Recell”? 36 Comments

ReCell® is a stand-alone, rapid, autologous cell harvesting, processing and delivery technology that enables surgeons and clinicians to treat skin

defects using the patient’s own cells in a regenerative process. (Vitiligo results here, about halfway down page)

Developed as an ‘off the shelf’ kit, ReCell enables a thin split thickness biopsy, taken at the time of the procedure, to be processed into an

immediate cell population for delivery onto the surface of the treatment area using a highly efficient, easy-to-use proprietary ’spray-on’

application process. Tissue collection, cell segregation and preparation of the cell suspension takes approximately 20-30 minutes in total during

which time the treatment area is prepared. Once processed, the cell suspension is available for immediate use and can cover a treatment area

up to 80 times the area of the donor biopsy.

ReCell enables the delivery of keratinocytes, melanocytes, fibroblasts and Langerhans cells harvested from the epidermal-dermal junction for

application onto a wound surface in order to promote rapid and effective healing.

ReCell has been clinically demonstrated to accelerate healing, minimize scar formation, eliminate tissue rejection and reintroduce pigmentation

into hypopigmented areas.

ReCell has been designed for use in a wide variety of wound, plastic, reconstructive, burn and cosmetic procedures including burns and scalds,

donor sites, glabrous injuries, mild to moderate scars, hypopigmentation (hypopigmented scars, iatrogenic hypopigmentation and Vitiligo) and in

aesthetic rejuvenation procedures.

As the ReCell technology enables cell processing at the site of treatment without the use of specialized laboratory staff, the process is both cost

and time efficient.

Advantages include:

· Minimization of donor site size and depth with concomitant reduction in complications, morbidity and healing time.

· Improved wound healing time and scar quality.

· Repopulation of melanocytes to reduce hypopigmentation.

· On-site processing for immediate application.

http://www.avitamedical.com/

http://www.avitamedical.com/index.php?ob=1&id=8



· Increased viability through immediate harvest and application.

· Ability to be processed by clinician and not require specialised laboratory staff.

taken straight from their site: http://www.avitamedical.com/

I’ve compiled a list of sites with more information:

ReCell on vitiligo photos

US Recell Spray-on-Skin Enrolment Commences

Avita First U.S. Treatment Burn Victim With ReCell

Avita ReCell product approved in China

AVITA GETS $1.452M FROM US MILITARY TO SPEED DEVICE APPROVAL.

http://www.avitamedical.com/index.php?ob=1&id=18

http://www.biotechnology-europe.com/news/news%20by%20company/Avita%20Medical%20Ltd/11.06.2010%20US%20Recell%20Spray-on-Skin%20Enrolment%20Commences.html

http://www.dddmag.com/news-Avita-Treats-First-Burn-Victim-With-ReCell-72910.aspx

http://news.smh.com.au/business/avita-recell-product-approved-in-china-20080703-311x.html

http://www.entrepreneur.com/tradejournals/article/202184473.html




Oh that’s great Natalie, that you ran this story.

Isn’t it exciting!

All the best

# 7 August 2010 at 9:38 pm

*

DJ said:

Thanks Natalie. This technology seems to be a promising step forward toward a cure for vitiligo. Checked out their website, researched their

case studies, and I was impressed with the results.

# 8 August 2010 at 4:00 pm

*

Dawn said:

Im really excited to hear about this :) Also, just received your Vitiligo Cover Lotion for the first time and it works great! I am very pleased. Plan

to reorder again. Thank you!!!!

# 9 August 2010 at 6:47 am



Sebastian said:

Hi there i’ve been a vitiligo patient for 3 years and its speeding up now faster than ever! i live in a country where medication and information

is scarce. i was wondering how well does the lotion work?

# 9 August 2010 at 10:51 am

*

joel said:

Does Somebody alreay test it on vitiligo? whats the results? Seems a futuristic thing eheh

Nice! we got to have more information about this specific on vitiligo.. cheeersss

and remember the real cure its inside of you!

# 10 August 2010 at 4:23 am

*

VEN said:

Natalie,

Just called the company they are currently doing two clinical trials for SCARS and BURNS. I requested them if I can use the product which they

said is not possible for the next two years. I suggested that we can request as a group for a new clinical trial for vitiligo she said that it is a good

approach and she will raise that with their team.

I will email her in the evening and I will copy you. Let me know if you have ever started a Clinical trial process.

Regards. # 10 August 2010 at 9:00 am


Hi Ven,



well done! i’ve never been a part of a clinical trial; however, i will do anything i can to help our with this ;)

# 11 August 2010 at 9:12 am

*

Mary said:

Natalie,

Your website is making a difference, so exciting. As a group we can be a powerful force and help to eliminate this disease.

once and for all, even if it’s 2 years away. We’re stronger than Vitiligo. I’m in.

# 11 August 2010 at 10:18 am

*

FD said:

Greattttttttt newsssssssssss ;D

I would love to be in too.

# 11 August 2010 at 5:55 pm

*

Dan said:

This is good news. I did some research about this and I found some stuff dating back to 2006. What makes them more confident now, is it due

to good results from clinical trials? I hope so.

# 11 August 2010 at 9:47 pm

*



Mary said:

Dan, through your research, did you happen to find out if this could be permanent, or could it come back?

I’m praying it’s permanent.

# 12 August 2010 at 7:31 am

*

drew said:

It sounds promising but…I think calling it a cure is kind of misleading. Treatment is probably a more accurate way of putting it. If it turns out

to be an effective treatment that is still really good news.

# 12 August 2010 at 11:27 am

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Mary said:

Unbelievably exciting!

Aren’t the photo’s encouraging?

Even if it’s not perfect now, or the fact that we can’t have access to it yet, it is a step forward.

The research and advancements will only improve in the next couple of years.

They will not stop now. # 12 August 2010 at 6:14 pm

*

SV said:

This treatment looks very promising…It gives one hope and the belief that research can help in finding a cure…



# 13 August 2010 at 3:18 am

*

VEN said:

All,

I think we should give it a try if the Clinical Trial happens and hope for the best. I was told that a clinical trial is very expensive. I inquired if we

can get the pack from Canada but they knew for fact Canada doesn’t treat patients in India. If any of you live in Europe or Canada please check

with the Avita counterparts and let us know.

I am optimistic because it is a new approach and it worked for similar ailments. I am also pessimitic because I had it for 21 years and didn’t

find any new medicine but we should try till we live and that is the approach I am headed towards.

I will call Avita again on Monday and let her know if we can do a campaign (via email or blogging) to convince Avita and FDA for a CT.

I will post once I hear back from them. Regards. # 13 August 2010 at 8:07 am

*

zz said:

hi Natalie

does national vitiligo or vitiligo society uk know any of this information?????i think if they know about this they could do something about

it…or make this treatment come out sooner…..i live in the uk and i hate the fat that alll the doctors dont care about us with vitiligo…only vitiligo

society uk cares i think..i only get information in there…. the phtoto in recell are amzing on the website… would this be decuss at the world

conferess 2010…any make it avilible world wide..

Natalie could you ask or send an email to national vitiligo or vitiligo secity uk to ask them do they know about this recell information..if they

dont know let they know…am sure if they know they could do something…

# 15 August 2010 at 5:14 pm

*



Dan said:

Hey Mary I did not find out if it was permanent or not but I think if the majority of us could get back to one color with what we have learned

could stay that way through healthy lifestyle but maybe im wrong…still though fingers crossed.

# 15 August 2010 at 10:11 pm

*

Sebastian said:

knowing i have vitiligo is making me more stressed than ever

i need some kind of support here anything will help

# 17 August 2010 at 11:13 am

zz said:

hi Natalie

does national vitiligo or vitiligo society uk know any of this information?????i think if they know about this they could do something about

it…or make this treatment come out sooner…..i live in the uk and i hate the fat that alll the doctors dont care about us with vitiligo…only vitiligo

society uk cares i think..i only get information in there…. the phtoto in recell are amzing on the website… would this be decuss at the world

conferess 2010…any make it avilible world wide..

Natalie could you ask or send an email to national vitiligo or vitiligo secity uk to ask them do they know about this recell information..if they

dont know let they know…am sure if they know they could do something…

# 17 August 2010 at 11:16 am

*



lee ha said:

just to let you all konw I just called the company the said about 18 months recell will be available but it work only for stable vitiligo it is like

MKTP

# 18 August 2010 at 8:38 am

Mary said:

Hi zz

Have a look at their website and you will see how it works.

That will help you a great deal.

Also, as lee ha just wrote, it will not be avail for 18months and then at that point they will probably start the clinical trials, I’m assuming.

You should also call this company and ask them questions.

It seems for now, your Vitiligo has to be stable, but that may change in the future, we don’t know.

It’s all good.

# 18 August 2010 at 12:23 pm

*

Sebastian said:

THANKS FOR ALL THE HELP

# 18 August 2010 at 12:29 pm

*




thanks for doing and sharing, lee…we all appreciate your great effort!

# 18 August 2010 at 12:31 pm



UV-protective drug to be tested for vitiligo 23 Comments

More exciting news in the development vitiligo treatments was announced today.

Media release

Wednesday 25 August 2010

Melbourne, Australia

UV-protective drug to be tested for vitiligo

SCENESSE® (afamelanotide) to be trialled as novel repigmentation therapy

A drug initially developed to protect skin from light and UV will soon be tested as a repigmentation therapy in vitiligo, a common disorder which

causes skin to gradually lose its pigment or tone. SCENESSE®, a new drug developed in Australia, will be evaluated for its ability to reactivate

melanin in the whitened, depigmented skin patches caused by vitiligo.

If approved by US and EU regulators, Melbourne-based Clinuvel Pharmaceuticals Ltd will commence trials in October.

“Our vitiligo program is a potential breakthrough for patients and testament to Clinuvel’s expertise in the field of dermatology and skincare: the

activation of melanin, pigment, in skin,” Clinuvel’s CEO, Dr Philippe Wolgen said.

The active ingredient in SCENESSE®, afamelanotide, works by mimicking the body’s own response to ultraviolet light; activating melanin in the

skin to protect against damage. The drug is delivered as an injectable implant, roughly the size of a grain of rice, and biologically activates

melanin for up to 60 days.

In vitiligo the pigment producing cells of the skin (melanocytes) are absent or inadequate. As a result, lighter patches of skin appear in different

parts of the body due to a lack of melanin. Vitiligo doesn’t cause physical impairment but does cause significant psychological and emotional

distress. The disorder affects up to 2% of the population. Nonsegmental vitiligo (NSV), the most common subtype, affects over 45 million people

globally.

While testing SCENESSE® for other diseases, including skin cancer, Clinuvel discovered that the drug may help vitiligo patients.

http://clinuvel.com/scenesse



“For a long time we were unsure of the potential of the drug in vitiligo,” explained Clinuvel’s Chief Scientific Officer, Dr Hank Agersborg. “But,

since the scientific reports came through on the effects of phototherapy in vitiligo, we understood SCENESSE’s ability to assist with repigmenting

skin lesions.”

SCENESSE® will be tested in a pilot NSV study on its own and in combination with an existing therapy called narrowband ultraviolet B (NB-UVB),

which uses UV light to activate pigment and restore melanocytes. It is expected that SCENESSE® will enhance this therapy as well as activating

melanin independently by stimulating specific melanocytes which exist in hair follicles within the skin.

“Vitiligo is a disorder that has a considerable impact on the lives of patients worldwide,” Dr Wolgen said. “To be able to evaluate a potential

therapy that could help improve quality of life for these people is a vastly rewarding prospect for Clinuvel.

“We are excited to be able to commence this trial and work with the vitiligo community to determine the drug’s effect.”

To date, SCENESSE® has been safely administered to approximately 550 patients and is in late stage confirmatory clinical trials in the US and

Europe for the rare light intolerance porphyria (EPP).

- End -

For more information, contact Clinuvel Pharmaceuticals Ltd. http://clinuvel.com/scenesse

Australia T: +61 3 9660 4900 or

Clinuvel AG (Switzerland) T: +41 41 767 45 45, [email protected]


mailto:[email protected]




Since I have joined in on this website (bless Natalie), it seems like once a month, there is some sort of breakthrough!

I know that it will still take some time, there are clinical trials to go through—-BUT IT’S HAPPENING!!!!

I really believe in my heart that soon, in our lifetime, everyone of us here, will be affected in some positive way by any one of these

advancements, in the fight against Vitiligo.

Maybe to stop it from spreading in our bodies, maybe transplanted or covered up so well that no one will ever know what we have, or maybe

even cured……

Whatever it is, it’s hope and hope is what let’s me wake up every morning and look at myself in the mirror and know that one day, that day

will come.

Natalie; doesn’t it make you giggle all day when you find these things!

# 26 August 2010 at 2:03 pm

*


It does Mary. And each time I find new information for us, I get so excited to let everyone know about it. Sometimes it takes longer than I’d

like to make the post because finding the perfect photo to accompany the article is very difficult. lol, but if that’s the hardest part of what I do,

I’m thankful!

# 26 August 2010 at 2:11 pm

Craig said:

Hi Nathalie,



This breakthrough really sounds very interesting. I wonder, if the implant would only activate the pigment around the area it was inserted or

would it activate the full body ? Its not often i get a really good feeling about vitiligo treatments, but in this case i do.

# 27 August 2010 at 3:34 am

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Kevin said:

here is a link to a great video the company posted:

http://clinuvel.com/index.php?option=com_content&task=view&id=1111&Itemid=7

# 27 August 2010 at 9:09 am

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Mary said:

Natalie, do you know if this is a permanent solution? I couldn’t find the answer in my research. What I did find very interesting is the

information about the hair folicle. If the hair is still black and has not turned white in the effected area, then the odds of re pigmentation are

really good. Anyway, if anyone else can find any info if this is a permanent solution or has to be done throughout the year, it would greatly be

appreciated.

# 27 August 2010 at 9:30 am

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VEN said:

Guys, this is indeed a great news… I have research on other treatments but this is a good break-through. I just hope it can get clearance from

FDA asap.

Natalie, Did you contact the company, I want to know if we can get this through mail orders or other means :)

ZZ, Positive attitude brings positive results be optimistic, I do understand your pain… I am surviving for the past 27 years with vitiligo.



regards

# 27 August 2010 at 9:07 pm

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Mary said:

I think we need to wait and see.

I personally don’t want this right away, I want them to do the proper research and clinical testing, so that the FDA passes this. It is something

we are injecting into our bodies, we have to know that it’s safe for us.

This has been developed after years of research.

It’s probably not the only company making this type of product.

I think soon, because of the increase of skin cancer, you will see more of this type of thing in the near future, giving us many options.

# 28 August 2010 at 7:33 am

zz said:

does anyone know when will this treamtent be aviliable..in the uk there is not much treatment avilable..and once this treatment is out will it

be in the uk…what is the cost of this treatment anyway…i think this treatment is avilible in italy

# 29 August 2010 at 10:58 am

*


zz, i included a link at the bottom of the post that goes to their website and their contact phone is listed. also, they have a Q&A section that

will answer some of your questions http://clinuvel.com/clinuvel-q-a-a

# 29 August 2010 at 11:15 am



*


zz, the post i made was from a press release that the company put out last friday and it explains all about the trials they are now doing in the

u.s for it’s use with vitiligo patients. just browse around their site a bit and read the information, it will answer your questions, or call them with

the number provided at the bottom of my post.

# 29 August 2010 at 6:18 pm

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zz said:

will this treatment be out in the uk???or do i have to go to usa to do the treatment???once its out..

# 30 August 2010 at 7:58 am

VEN said:

All,

I contacted their office in Melbourne, they are not providing any information on ongoing trials for security reasons. I requested them for

dermatologist’s in USA who are part of this trial they asked me to email them which I did and the email bounced back.I sent them an email from

their website and called them today. I gave them my email address so that they can email me. I will let you guys know if I hear from them.

Regards,

# 30 August 2010 at 7:36 pm

*


Hi, I just wanted to drop a quick note to let you know that I was contacted by email this morning by an executive at Clinuvel, the

manufacturer of Scenesse. He will be calling me in the near future and I will post pertinent information as it is available.



cheers and all the best!

# 30 August 2010 at 8:05 pm

*


hi zz, at this early stage, there are no definitive answers to your (post fda approval) questions. i am sure the company must have a complete

business plan concerning the distribution of scenesse, but until they get approval, chances are slim that they can share future plans. rest

assured, as soon as there are answers, i will post them here. # 30 August 2010 at 8:12 pm

zz said:

so we have to wait years again??

# 31 August 2010 at 8:43 am

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Suzanne said:

Had vitiligo for so many years and it spread so much, new person I recently met thought I had survived a fire or some kind of horrible

accident. All I could do was laugh. So it must look great to strangers, eh? Also, my dark hair has gone completely white (starting when I was 17).

As a teenager, maybe a novel kick, but now as an older adult I suspect people think I must be twice my age. It is also very resistant to dye so I

don’t bother. I completely gave up a long time ago on any kind of effective treatment.

If this stuff is legit seems like doctors would jump on it for their patients?

Anyone else also diagnosed with multiple sclerosis? I wonder how two autoimmune disorders would respond to such a method?

# 31 August 2010 at 7:06 pm



zz said:

hi

this looks really good but how long do we have to wait and does it cost alot…will this be in england too or just in usa..

i really hope that this 2010 world congress is the beginning of new treatment and more effective treatment…

while am here i want to thanx to nat for setting up this website …i really wish if the doctors are kind like you and take out vitiligo seriesly and

help others… if they take vitiligo seresly long time ago maybe there would be a more effective treatment aviliable by now…

fingers cross and see what this world congress going o bring for us…hope its a good one….


*

VEN said:

All, I received email from Clinuvel Communications office….

Thank you for your recent email to Clinuvel regarding our upcoming pilot study.

The company has received a strong response from the community to its plans and I apologise for not being able to respond to your enquiry

personally.

Pending regulatory approval, Clinuvel intends to commence a pilot Phase II trial of SCENESSE® in individuals diagnosed with nonsegmental

vitiligo. You can read the company’s full announcement here.

Clinuvel is working with four centres, two each in the USA and Europe, who will conduct the study. No further centres will be considered for

this initial pilot program.

The company is yet to release details on trial participation. Please note that we do not recruit directly for any of our clinical studies; rather we

work with physicians in the field to identify potential trial participants.



To keep abreast of our trial program for vitiligo, please continue to monitor our dedicated webpage at http://www.clinuvel.com/vitiligo. You

may also wish to sign up for email updates from Clinuvel, which can be done through this page on our website.

The company will release further details on its program when possible. I appreciate your patience as we progress with our vitiligo study.

Kind regards,


*

Betsy Morrigan said:

I think that Clinuvel’s clinical trials with Scenesse is exciting news for us, and I am very glad that they are now testing this new melanin -

procucing medication for vitiligo.

I think we should not bombard the company for vitiligo treatment info which they don’t have yet. In a couple of years they might have some

very good news for us, let’s hope! Until then, we should let them do their work. We want this medication to be safe, you know! If this Scenesse

causes cancer and other diseases like HRT ended up doing, we don’t want to take it. I would rather have vitiligo than cancer!

This is not some kind of natural oil, you know. It is a chemically produced intense medication. All medications have side effects, let’s face it,

especially something like this they implant into your body as a time release capsule, so we need to make sure this is (relatively) safe and to know

what the side effects are before we jump on it.

What I wonder about it is that if it increases melanin production, let’s say it does that on the white patches AND our regular still pigmented

skin, won’t it just increase the contrast in pigment by making the regular skin darker. Although my doctor said, “Once you have vitiligo, there is

no ‘regular skin.’ All your skin is ‘vitiliginous,’ just waiting to be depigmented.” (Don’t you love the sweet things the derms say to you?).

You see what I mean about increasing the contrast? Whenever I have used Vitiligo oil or other things -–even lots of celery–that make your skin

more photosensitive, all I get is much more contrast making it look worse, i.e. much browner tan against temporarily pink vitiligo patches. I don’t

do this any more. Que sera sera.



So let’s be patient with this company while they safety-test their new product. It’s exciting for us that they’re now doing vitiligo clinical trials

with this new medication now. I dearly hope that this product will bring back our lost pigment and be a permanent treatment for our problem.

# 25 October 2010 at 12:18 pm



The drug development process – Part 1 of 3 No Comment

Since I posted the press release from Clinuvel about SCENESSE® (afamelanotide) to be trialled as novel repigmentation therapy, I have noticed

many comments asking how long it will be until we see this product on the market. Frankly, there is no simple answer.

Last week I spoke at length with Head of Global Network and Communications at Clinuvel, and by the end of our conversation, I felt like this is a

company truly out to help people. I’m not saying that they don’t care about their bottom line, but through his words, and actions since our

conversation, it’s been clear that we, the “patients”, are a priority.

I thought that it would be helpful if we understood the clinical trial process, so I was given this information to pass along as a guide for us all.

The drug development process – Part 1 of 3

As we’ve said before, the drug development process is long and complex. There is always a measure of anticipation from the market and

patients, but there is also an overwhelming amount of work involved. Ultimately the lengthy processes and protocols are there for two

important reasons: to ensure safety and effectively demonstrate the drugs effectiveness and efficiency (efficacy).

The first stage can be referred to as the initial development. This is where potential drugs start life. Research begins as a response to need, an

idea, grants and requests from governments and foundations, or all of the above.

Next comes the pre-clinical development stage. This is where researchers assess toxicity and examine the effects of the drug. There are also

initial Pharmacokinetic (PK) and Pharmacodynamic (PD) studies.

PK studies involve discovering what the body does to a drug. How does the body absorb, distribute, metabolise (transform) or eliminate the

drug? While PD studies concentrate on what the drug does to the body. How does the drug react with naturally occurring chemicals and

substances? What is it’s mechanism of action?

Having shown promise in the first two stages, a drug can potentially advance through to clinical development. We say ‘potentially’ because

clinical trials require significant funding, rigour and a drug with adequate scope and its own potential to become a successful and effective

response to a medical need.

As per our earlier post, only 250 drugs from every 10,000 discovered or researched will even get to this stage, and only five will progress to the

next. The length of time spent on initial and pre-clinical development varies greatly, but on average takes a minimum of three years.


http://www.clinuvel.com/en/blog/?p=9



In our next post, we’ll discuss the structure and process necessary for undertaking clinical trials that adhere to the standards set by regulatory

bodies, and give drugs their best chance for progression.

http://www.clinuvel.com/en/blog/pharmadev/the-drug-development-process-%E2%80

http://www.clinuvel.com/en/blog/pharmadev/the-drug-development-process-%E2%80



The drug development process – Part 2 of 3 This is a continuation of the post “The drug development process – Part 1”

Clinical trial development must follow a strict and comprehensive process and there are different objectives and focuses for each phase.

Generally, phase I trials assess the toxicity of a drug, while phase II focuses on in-depth study of the drugs activity with the chosen condition or

indication. Phase III aims to prove the drugs efficacy (efficiency) as a treatment or cure for a condition. However, the safety of the drug is a

common consideration throughout the entire process.

Apart from phase I, where the objective is to examine toxicity, the first requirement for a clinical trial is to develop a concept or question. This is

where the ‘clinical endpoint’ is identified as a key element of the study. A clinical endpoint is a health problem, disease, disorder or condition

that has the potential to be prevented, treated or cured by the drug being trialed.

Following this, the trial must detail how the study will progress in relation to the trial question or concept. The trial process must adhere to local

and regional regulatory requirements, governed by the regulatory authorities. These regulatory authorities oversee pharmaceutical

development and ensure that trials are thorough, relevant and above all, safe. They carry out a range of assessment and monitoring activities to

ensure pharmaceutical goods are of a high standard. They aim to ensure that access to new and effective treatments is available within a

reasonable amount of time.

The Australian regulatory agency, the TGA, sums it up well.

“Although the methods for implementing and enforcing these principles vary across regulatory agencies, the end result, it is hoped, are trials

that collect high quality, credible data that contribute to the answering of specific scientific questions, while most importantly protecting the

rights, safety and well-being of clinical trial participants.”

Separate from regulatory approval, a study must also gain ethical approval from the relevant ethics committee. These committees can be local

to the study site, or governed by region, depending on where the study is taking place. An ethics committee will examine elements such as a

trials risk to participants or the accuracy and clarity of information provided to patients in order to obtain their consent.

A trial can only commence once it has received the necessary regulatory and ethical approvals. Usually the next step would be to recruit trial

participants. Alongside this, staff and physicians must be trained in the trial protocol, including drug education and how to administer, manage

and monitor the trial. Having completed all these steps, the first patient can be dosed.

http://vitiligocover.com/the-drug-development-process-%E2%80%93-part-1-of-3/



Traditionally, phase I trials can be completed within months, while phase II trials average two years. A phase III trial is usually longer and more

intensive, and these have been known to last up to five years or more.

Interestingly, the approved trial length does not reflect how long the trial will take in real terms. Trial length actually indicates the amount of

time a participant is involved in the trial for the study to be considered complete. Not all participants start at the same time, so a 12 month study

could take more than two years depending on when the first and last patients begin their dosing.

Following the completion of the each trial there are detailed and rigorous data collection and analysis stages to confirm the trial has answered

the research question. Then there is the collating, writing and publication of discoveries, research papers and trial results and conclusions.

Finally, the trial dossier is compiled and submitted to the regulatory body with the goal of receiving approval and proving the case that trials

should progress to the next phase of the development process.

This is post 2 of 3 on the drug development process.

Click here for part 1

http://www.clinuvel.com/en/blog/pharmadev/the-drug-development-process-part-2/





The drug development process – Part 3 of 3 3 Comments

This is a continuation of the post “The drug development process – Part 1” and “The drug development process – Part 2?

The 3 Phases of clinical trials are strictly monitored and controlled by different regulatory bodies such as the FDA (US), the TGA (Australia), the

EMEA (EU) and SwissMedic.

All trials must undergo the same rigorous process as outlined in our previous post, but are quite distinctly different and influenced by a number

of other factors.

Phase I trials are carried out on healthy volunteers and are primarily focused on exploring the drugs potential toxicity and tolerability in humans.

Alongside that are extensive PK and PD studies (more detail in part 1). These trials normally consist of a small number (20-100) of healthy

volunteers and usually include studies on ways of administering the substance, dose ranging, or dose escalation, where the different amounts of

the drug are administered to help ascertain the optimum balance of effectiveness versus adverse events (side effects).

If the drug is proved safe and well tolerated in phase I, the drug will progress to phase II trials, where the focus is on the substances ‘activity’.

This phase traditionally consists of 100-1000 patients and has a maximum trial length of two years.

Phase II trials involve assessing the activity of the drug on patients suffering from a specific disease or disorder (indication) where the clinical trial

may lead to scientific evidence, be effective in preventing, treating or curing the condition. During this phase adverse events are monitored and

optimal dosages are assessed.

This phase is often the point at which drugs fail, as they prove to be ineffective on the chosen indication, or the treatment is discovered to be

not practical or efficient.

If a drug shows that it is effective in treating an indication, it will progress to phase III. This phase aims to provide a definitive study of the

treatment, and if there is an existing treatment for the indication, to prove that the new treatment is its equal, or better. The primary focus is on

the drugs efficacy and the gathering of statistical proof of efficacy. These trials can involve between 1000 and 5000 patients and run for several

years.

Upon completion of the 3 Phases, the results and findings of the entire development process are compiled into a dossier for submission to the

relevant regulatory body, hopefully to receive a Marketing Authorisation Approval (MAA). It is estimated that the entire process costs an

average of $500 million and for every five drugs that reach Ph III trials, just one will be approved for market.



http://www.fda.gov/

http://tga.gov.au/

http://www.emea.europa.eu/

http://www.swissmedic.ch/





And it doesn’t end there. Following the granting of MAA and the drug becoming available, it is then necessary to run phase IV trials, which

monitor long term and widespread use of the drug for several years.

This is post 3 of 3 on the drug development process.

Click here for part 1

And here for part 2







Interview with Clinuvel 10 Comments

Recently I’ve had the great pleasure of speaking with Lachlan Hay, Head of Global Network and Communications, Media Communications & IT

Team @ Clinuvel. I had many questions about Scenesse®; how it works, the clinical trial process, and when it will be offered world-wide. Mr. Hay

was kind enough to answer every question in detail.

Here is the interview:

Recently, the Australian company Clinuvel announced that it would commence a clinical trial of a new drug for

vitiligo. The company has received a large number of questions related to its proposed trial and has released this

Q&A to help people understand the potential, and potential limitations, of its program.

Who is Clinuvel and what is your drug SCENESSE®?

Clinuvel is an Australian biopharmaceutical company developing drugs for individuals with a range of

dermatological conditions.

Clinuvel has focused primarily on a drug called SCENESSE® (afamelanotide) which is an injectable implant drug

roughly the size of a grain of rice. The active ingredient in SCENESSE® is a peptide called afamelanotide. This is

an analogue of a naturally occurring hormone called alpha-Melanocyte Stimulating Hormone (?-MSH). In nature, ?-

MSH is our body’s response to skin damage from ultraviolet (UV) light. ?-MSH binds to receptors (specifically

melanocortin 1 receptor or MC1R) in the skin on particular skin cells, melanocytes, which in turn activate our skin’s

pigment, melanin. Melanin provides skin cells with color as well as a biological barrier to protect them from UV and

light. The skin is visibly darkened when melanin production is activated by ?-MSH.

Afamelanotide’s chemical structure differs slightly from natural ?-MSH: it has been altered to increase the peptide’s

half-life (increasing the length of time it can exist in the blood stream from seconds to minutes) and to increase its

ability to bind to MC1R on the melanocyte. As a result, afamelanotide is able to mimic the effects of the natural

occurring ?-MSH, with a longer lasting effect and increased potency.

Clinuvel has refined afamelanotide’s formulation and chemical structure to reach the current drug formulation: a

16mg afamelanotide controlled release implant, SCENESSE®. SCENESSE® has been formulated to achieve the



optimal dose for activating melanin production systemically, while minimizing exposure to the drug and thus

reducing possible side effects.

SCENESSE® is administered by physicians in the fatty tissue just above the hip. Approximately two days after

administration, SCENESSE’s visible effect can be seen: the skin becomes darker. The drug is only present in the

body for approximately ten days however the effect of the drug is seen for 60 days. Hence, in current clinical trials,

SCENESSE® is administered once every 60 days. To date, nausea and headaches are the primary side effects

reported in clinical trials however the drug has been safely tested in approximately 550 individuals with no reports

of serious adverse effects.

For the past five years, SCENESSE® has been trialed for a number of UV and light related skin disorders

(conditions called photodermatoses). The most advanced of these programs is for an indication called

erythropoietic protoporphyria (EPP), a rare metabolic disorder which causes absolute light intolerance.

SCENESSE® has been shown to reduce the number and severity of phototoxic reactions in late stage trials of the

drug in individuals with EPP and a confirmatory program is underway in the US and Europe. Pending the outcome

of this confirmatory program – due to complete in the first quarter of 2011 – Clinuvel expects to file SCENESSE®

for Marketing Authorisation Approval (MAA) with European regulators.

In August 2010, Clinuvel announced it would commence a new program for SCENESSE®, trialing the drug for the

first time as a repigmentation therapy in individuals diagnosed with nonsegmental vitiligo. The company is currently

making submissions for regulatory and ethics approvals to commence a pilot Phase II study in four centers, two

each in the US and Europe, which will evaluate SCENESSE’s ability to repigment skin both as a standalone

therapy and as an adjunctive therapy with narrow-band ultraviolet B (NB-UVB) light therapy.

To read more about our work, log onto http://www.clinuvel.com

How do you expect SCENESSE® will work to repigment skin in vitiligo?

The mechanics the vitiligo are still poorly understood. Recent research studies have highlighted numerous ?-MSH

and MC1R abnormalities in the blood and skin of patients with vitiligo, demonstrating the important role of ?-MSH

in the disorder.

SCENESSE®, which mimics the effects of the naturally occurring hormone ?-MSH, is expected to restore this

deficient system, and thus provide efficient therapeutic repigmentation for the patients.

http://www.clinuvel.com/



SCENESSE® as an adjunctive therapy with NB-UVB phototherapy may also speed up and assist the

repigmentation process initiated by phototherapy and possibly reduce the doses of NB-UVB radiation. Clinuvel has

created a video to help explain this process in greater depth.

The company has received significant input and encouragement from leading vitiligo experts worldwide for the use

of SCENESSE® as a repigmentation therapy and eagerly awaits the chance to assess the drug in nonsegmental

vitiligo.

Where will the trial be run, in which countries?

Clinuvel intends to commence the pilot trial at four leading vitiligo centers: two in the US and two in Europe. No

other sites are being considered for this trial. Once regulatory and ethics approval has been granted, more specific

information will be made available on these centers.

How can I participate in the trial? Can I register with Clinuvel?

Every clinical trial has inclusion and exclusion criteria which dictate which individuals can participate in a clinical

trial. These criteria are determined by the company and/or physicians running the trial and approved by regulatory

and ethical authorities.

Clinuvel is yet to announce inclusion and exclusion criteria for the pilot trial of SCENESSE® in vitiligo. It is

anticipated that, once approved by regulatory and ethical authorities, the four centers involved in the trial will look to

recruit trial participants from their existing patient groups. As a pilot study, the proposed trial will not look to recruit

many participants.

Clinuvel does not recruit trial participants directly, as to do so may jeopardize the integrity of data generated in

clinical trials. The company cannot respond to individual requests to be involved in the pilot study of SCENESSE®

in nonsegmental vitiligo.

Clinuvel advises individuals with vitiligo to talk to their treating physician which is the best appropriate person to talk

to for the different treatment options for their vitiligo, including clinical trials.

Once regulatory approval has been granted, further information will be made available on

http://www.clinuvel.com/vitiligo on whether individuals can register their interest to participate in trials.

http://www.clinuvel.com/vitiligo



When and how do you expect to release results from the pilot vitiligo study?

Clinuvel expects to complete the pilot study of SCENESSE® in vitiligo and publish results from this study during the

second quarter of 2011 (1 April-30 June). As a public company listed on the Australian Securities Exchanges

(ASX), Clinuvel will first announce its results to the ASX through a formal announcement, before posting them on

the company’s website at http://www.clinuvel.com. On this site you can view previous examples of results being

released by the company.

Will Clinuvel run further trials in vitiligo? When will SCENESSE® be approved for use in vitiligo?

Clinuvel expects results from its pilot study in vitiligo during the second quarter of 2011. Until the company has

analysed these results, it is not feasible to make any projections on future trials or approval dates.

What is ‘regulatory and ethics committee approval’? How long does this take?

Whenever a company or physician (a ‘sponsor’) wishes to assess a drug in a clinical trial, it must seek approval

from the governmental departments or agencies which regulate or control new drugs in a given country or

jurisdiction, such as the FDA in the US or the TGA in Australia. This process varies from country to country, but

generally requires the sponsor to present a clinical study protocol, which outlines the specifics of the study, and

provide scientific rational for their planned trial. These documents must show that the necessary regulatory

guidelines related to clinical trials are being followed in the trial protocol.

The relevant regulatory agency will review the study protocol and scientific rationale and determine whether the

study should proceed. The protocol is also reviewed to ensure it meets Good Clinical Practice or GCP standard.

This complete process often requires some negotiation between the sponsor, the physicians involved in the trial,

and the regulator, to reach a satisfactory conclusion. Generally this process takes 1-3 months.

During or shortly after the regulatory approval process for the study protocol, the Ethics Committees at individual

study sites will reviews the protocol to ensure it meets the ethical standards of the particular institute or hospital

conducting the study.

To help with understanding the clinical trial process, Clinuvel has published a three part series on its blog entitled

The Drug Development Process to read these posts, see part 1, part 2 and part 3. Clinuvel also maintains relevant

information on Pharmaceutical Development on its website.

http://www.clinuvel.com/






Is SCENESSE® available for purchase anywhere in the world?

Currently SCENESSE® is only available by a physician’s prescription in Italy under a law called 648/96. The

648/96 listing allows Italian physicians to prescribe SCENESSE® to Italian citizens diagnosed with erythropoietic

protoporphyria (EPP). For more information on this scheme, see this webpage.

SCENESSE® cannot be obtained outside of Clinuvel’s clinical trials anywhere else in the world.

How can I find out more about Clinuvel’s program for vitiligo with SCENESSE®?

Log onto http://www.clinuvel.com/vitiligo




10 Comments » VEN said:

Natalie,

Do you know what they mean by nonsegmental vitiligo?I want to know if I have nonsegmental or just regular vitiligo.

regards


*


Hi Ven,

this is a great question. I will write a post on it for tomorrow, but you can see photos immediately if you do a google search. :)


*

Vig said:

Hi Nathalie, Can we know , which medical centers are involved in the clinical trials so that we can directly approach them.

Thanks,

Vig


VEN said:

Vig, I requested Clinuvel and they wouldn’t give that information… they only say to visit their website.



I found that Derm’s in Italy can prescribe can anyone in Europe/Italy get in touch with them and let us know ?

V


*

Betsy Morrigan said:

Nathalie, thank you so much for this informative interview. I am excited about this possibility too, but I say to all of us…Be careful…don’t rush

into it! let them do their clinical trials and see if it works for vitiligo and if it’s safe. I hope it does work! Maybe we’ll have a great treatment then.

From the Clinuvel website, it sounds as though Scenesse will be an adjunct to NB UVB treatment.

# 7 October 2010 at 2:11 am

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Anita said:

My 8year old daughter would be sooo happy at the thought of a cure, she has been a nervous wreck since this appeared all over body just

over a year ago,thanks for the information :)

# 3 November 2010 at 3:59 am

*

Sue said:

Hi Anita,

My 7 year old daughter too has vit. spreading rapidly. I was curious, why exactly do you think your daughter started depigmenting? Since we

both have kids close in age with the same skin condition, I thought, may be we could keep in touch with posts as to what we are doing to treat

them. Regards.




Betsy Morrigan hawaiipackandpaddle.com said:

We need to be careful here. Don’t try to treat yourself with Scenesse until we see what the side effects are. They could be very serious

including skin cancer. Let Clinuvel finish their clinical trials and publish the side effects. We’re all excited about this new drug Scenesse, but let’s

remember that any drug that has the power to switch on our melanocytes and turn our skin darker will also carry big side effects!

I ask myself all the time and I ask you: Which would you rather have: cancer or vitiligo?

For children right now, I would go with the tried and true: nb uvb, vegetarian diet, no spices, no red meat, mild exposure to sunlight…see if

that helps. If I had a child with vitiligo, I would also send them to a vitiligo children’s summer camp so they would not feel so isolated and so they

could see that it affects many, many kids them like them.

# 3 November 2010 at 1:08 pm



What is segmental & non-segmental vitiligo? 2 Comments

I’ve had vitiligo for over 14 years and a few weeks ago, after reading that Scenesse® works on non-segmental vitiligo, I realized that not only do I

not know what type of vitiligo I have; I don’t even know the difference between segmental and non-segmental vitiligo. I figured that I can’t be

the only one who never looked into this, so I thought I’d share what I learned about them with you here… and I’m going to put it in layman’s

terms.

Non-segmental vitiligo (a.k.a. vitiligo vulgaris and NSV) is the most common of the 2 types of vitiligo. It is often characterized by white patches

that are generalized (seen anywhere on your body), symmetrical (if it’s on one side of your body, it’s in the same place on the other side. eg.

both hands, both elbows, both feet, etc.) and increase in size over time.

Segmental vitiligo (a.k.a. SV and asymetric vitiligo) looks like NSV but the term Focal is used because it is a limited area.

And finally, to confuse matters when self-diagnosing, NSV and SV can coexist, so you could have both. This is classified as Mixed vitiligo.

After reading this, remember that I am not a doctor and I have had no formal medical training. These definitions are my summarizations of the

definitions I have read in medical journals and books.

2 Comments »

VEN said:



Nat, thanks a lot Natalie… I am surprised/confused/irritated because its been 27 years and I dont know about my vitiligo at the same time it is

funny because I might have visited lot of doctors and they didn’t know this either :)

cheers,

V


*

lee ha said:

is it true they say segmental vitiligo has nothing to do with autoimmune?



What goes on during clinical trials? No Comment

Clinical trials are formal medical tests of a drug in a clinical setting, such as a hospital, to monitor a drug’s safety profile and effects in humans.

Performed under strict regulatory and ethical guidelines, clinical trials form the majority of a drug development program’s time and cost and can

involve thousands of patients over many years. The goal of any clinical trial is to determine a drug’s effects on the human body, based on a set of

scientific parameters determined prior to the trial, with specific goals established for each ‘phase’ of the clinical trial process. Should a drug

prove both safe and effective in clinical trials, a drug developer will then seek approval to sell the drug from regulatory agencies, such as the FDA

or EMA.

Once a drug is identified as having therapeutic potential through research or discovery, pre-clinical trials are undertaken. These trials focus on

examining the drug’s toxicity, which organs are targeted and aim to discover the drug’s ultimate safety profile.

There are three phases of human clinical trials prior to the drug applying for Marketing Authorisation Approval (Phases I-III) and one phase which

commences when the drug is approved and available (Phase IV). During Phase I the focus is on safety, and optimal dosing and delivery method

are explored and refined. A key area of exploration during Phase II trials is discovering and quantifying a drug’s ‘efficacy’ (effectiveness) in

treating a condition, normally in a small patient population, while Phase III trials confirm this data, further understanding and seek to confirm

evidence of efficacy in a larger patient populations. Phase IV studies monitor a drug’s ongoing safety and efficacy over extended periods of time,

generally at the request of a regulatory agency.

The success, or otherwise, of a drug hinges on the results gathered from these clinical trials and subsequent analysis and research.

Phase I Trials

Phase I trials are carried out on healthy volunteers and are primarily focused on further exploring a drug’s potential toxicity and tolerability in

humans. Alongside this are extensive PK and PD studies. These trials normally consist of a small number of healthy volunteers (20-100) and

usually include studies on ways of administering the substance, dose ranging, or dose escalation, where the different amounts of the drug are

administered to help ascertain the optimum balance of effectiveness versus adverse events (side effects).

If the drug is proved safe and well tolerated in phase I, the drug will progress to phase II trials where the focus is on the substance’s ‘activity’.

This phase traditionally consists of 100-1000 patients and has a maximum trial length of two years. Patient numbers will vary, however,

according to the rarity of the indication being studied in the trial.



Phase II Trials

Phase II trials involve assessing the activity of a drug on patients suffering from a specific disease or disorder (indication) where the clinical trial

may lead to scientific evidence that a drug is effective in preventing, treating or curing a condition, without posing an unacceptable risk to the

patient population. During this phase adverse events are monitored and optimal dosages are assessed.

Phase II is often the point at which many drugs fail to meet clinical trial endpoints, as they prove to be ineffective for the chosen indication or

the treatment is discovered to be impractical or inefficient. If a drug shows that it is effective in treating an indication, it will progress to phase III.

Phase III Trials

Phase III trials aim to provide a definitive study of a drug, and if there is an existing treatment for the indication, to prove that the new treatment

is its equal, or better. The primary focus is on a drug’s efficacy and the gathering of statistical proof of efficacy, while continuing to monitor

safety. These trials can involve between 1000 and 5000 patients and run for several years.

Phase IV Trials

Phase IV trials are carried out after authorisation has been granted by a regulator and a drug is on the market; often Phase IV trials are a

requirement of a drug’s approval. Their role is to monitor a drug’s safety and efficacy over a longer amount of time, and with a broader group of

patients, than can be included in clinical trials prior to approval of the drug.



Is there a connection between gluten intolerance and vitiligo?

The possibility of gluten intolerance being connected to vitiligo has been brought up many times, on this site and in medical journals, and the

theory makes a lot of sense to me because of the similarities I see with other issues known to be connected to vitiligo.

We already know that that many people with vitiligo have a Folic Acid and/or B12 deficiency, and I’ve read some cases where patients have

received B12 injections repigmented.

I dug a little deeper into what causes B12 deficiency and found that those with the disorder are unable to produce enough of a protein

substance - IF (intrinsic factor) – in their stomach that allows their body to absorb vitamin B12. Vitamin B12 is injected straight into the patient’s

blood, therefore bypassing the stomach which is unable to absorb it properly.

Apart from creating red blood cells and keeping our nervous system healthy, we also need vitamin B12 in order to be able to absorb folic acid.

Next, I went on to find that gluten intolerance (a.k.a. Celiac disease ) is an inherited, autoimmune disease in which the lining of the small

intestine is damaged from eating gluten and other proteins found in wheat, barley, rye, and possibly oats.

Are you still with me? lol. Here’s what I’m thinking…If I have a gluten intolerance for a long time, that could have caused a B12/folic acid

deficiency due to malabsorption of these vitamins from my regular diet. This in turn May have contributed to the onset of vitiligo because B12 is

a crucial catalyst for the cell division process. Melanin (substance that gives the skin its color) is created by cells called melanocytes. When

there is a vitamin B12 deficiency in the body, the melanocytes cannot properly perform the function of creating melanin. Additionally, the

melanocytes might just die away and not be replenished. This causes a depigmented spots on the skin…vitiligo.

All that said, this is simply a hypothesis based upon my research, but I thought that I would share it with you in case it might help in our quest to

regain even coloring of our natural skin tone.

Can gluten be absorbed through the skin?

Question

If I have celiac disease, do I need to be concerned about sunscreens, shampoos and cosmetics that contain gluten?

http://www.medicalnewstoday.com/articles/172774.php

http://www.nlm.nih.gov/medlineplus/ency/article/002381.htm

https://health.google.com/health/ref/Celiac+disease+-+sprue

http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms

http://www.medterms.com/script/main/art.asp?articlekey=4340



Answer

from Michael Picco, M.D.

No. Gluten-containing skin care products and cosmetics aren’t a problem unless you accidentally swallow them. For this reason, avoid using such

products on your lips or around your mouth. Also, avoid using gluten-containing dental products, such as certain mouthwashes and toothpastes.

If you’re uncertain about whether a product contains gluten, check the ingredient list on the product label or call the manufacturer.

Some people develop a form of celiac disease called dermatitis herpetiformis (DH), which causes an itchy, blistering rash. This skin disorder is

also linked to gluten intolerance. But although it involves the skin, DH is caused by ingesting gluten, not by skin contact with gluten. So,

eliminating gluten from your diet will help clear up DH as well.

If you use a cosmetic or skin care product that contains gluten and you develop a skin reaction, see your doctor or dermatologist to identify the

cause. It is possible to have an allergy to wheat or another grain that could cause a skin reaction.



Vitiligo World Congress 2010 – thoughts and reflections 38 Comments

Late last week, Clinuvel attended the first ever Vitiligo World Congress (VWC) in Milan, Italy, to learn more about current issues in treating

vitiligo. The VWC is an ambitious project, designed to address both physicians’ and patients’ requests for new therapies and to enhance

understanding of the disease. The medical conference is the first of its kind, with one of the three days being entirely devoted to patients.

Several major issues struck our attendees and may have ramifications for our ongoing work in the field of vitiligo.

Firstly, there is now consensus among most leading experts that vitiligo is an auto-immune disease which lies dormant until an environmental

trigger causes onset. For many readers, this will not come as a surprise, however it was the conviction with which these themes were presented

and discussed that showed greatest progress.

Of particular interest was the vitiligo GWAS study; a global effort to identify possible genetic variations which contribute to vitiligo.

Unfortunately, there is a vast area of disease knowledge which still remains uncertain. For example, while it is clear that there is genetic

predisposition to the disease, the genetic variations identified in the GWAS study only account for approximately 11 percent of vitiligo cases.

In terms of treatment efficacies, the rate of repigmentation with selected therapies is often encouraging, but long term follow up has shown that

treatment effects are frequently short lived and depigmentation eventually reoccurs.

Mental health and quality of life were two main themes central to the conference. Both physicians and those with vitiligo spoke with conviction

about the devastating impact vitiligo can have, not only on those directly affected, but also on their families and friends. This was perhaps best

surmised by Don Verze (founder of the San Raffaele Hospital hosting the conference), saying that vitiligo was a ‘psychological catastrophe’.

Finally, a number of speakers presented on the challenges faced in the study of vitiligo, particularly how best to design a trial for a therapy or

treatment which will produce a clear outcome. Given the many unknowns in vitiligo – causality, onset, spread of disease – it was emphasised

that trials must be able to maintain high standards if they are to have a genuine contribution to the effort of tackling the complex disease that is

vitiligo.

Did you attend the congress or would you like to know more about the issues above? Feel free to add a comment below.

Further reading:

- The 2010 Vitiligo World Congress program

http://www.vwc2010.com/scientific_programme.asp



- More on Clinuvel’s program for vitiligo can be found at http://www.clinuvel.com/vitiligo.

- An introduction to GWAS can be found here. More can be found on recent progress with the GWAS study in China in this recently published

paper.

- Results from another vitiligo study, looking at research priorities, were presented at the conference and will be published online here,

shortly.

Image reference:

‘MIT Forum hosted at UM’ uploaded to flickr.com by ‘alexdecarvalho’ on 7 March 2007, <http://www.flickr.com/photos/adc/414753294/>.

http://www.clinuvel.com/en/blog/discourse/vitiligo-world-congress-2010-%E2%80%93-some-thoughts-and-reflections/


http://www.nature.com/ng/journal/v42/n7/full/ng.603.html

http://www.nature.com/ng/journal/v42/n7/full/ng.603.html

http://www.vitiligostudy.org.uk/

http://www.flickr.com/photos/adc/414753294/

http://www.clinuvel.com/en/blog/discourse/vitiligo-world-congress-2010-%E2%80%93-some-thoughts-and-reflections/



38 Comments » Hana said:

This is the report I got from a member on other forum in Us, Vitiligo support internatinonal.

Truly hope on 1st Vitiligo World Congress

Thursday September 30, 2010 8:30 AM

Last weekend I followed the three days conference where the leading top scientists and Clinicians of vitiligo were participated in Milano.

Since I m not a medical person , I was afraid not to understand what they going to talk about on the scientists days, but thanks to this forum

we have learned a lot, I have understood mainly , most of the topics and issues are discussed here before. The only different is it feels so good

when you hear the updating from the right people with some evidence and data but most remains still just as theory .

When ever I see “before and after photos” on the internet it remands me only Photoshop trick, but now when I saw doctors and researchers

show on the presentation before and after photos watching us the progress and the surgical evidences in front of other leading scientists, it

really gave me a confidence that there is some thing we can do.

Dr.R.Spritz had a wonderful presentation on recent advances in genetics of vitiligo ,he explained it in a very easy way . he mentioned that

there is a huge amount of fund and research on the other autoimmune disease which have some common similar genes with vitiligo. If the other

autoimmune diseases find the gene then we are automatically inn , it will make it easier to find the main cause. Dr. Sprits took his time to thank

Vitiligo Support International, for cooperating and playing a key role in the study by helping to recruit participants. Finnaly He says “ we have got

the street we are looking for the addresses”

Another researcher who comes clause to find the underlying cause is Dr. Atsushi T. from Japan;- his presentation was heavy to understand

for me it was on the scientists day explanation was only medical and biological symbols combinations , generally it was about possible link

between Keratinocyte expression of p SAT3 ,it is about infiltration of TH17 cells in to vitiligo skin, according to others who explain to me this

research is important to understand what made the antibody cells attack melanocytes. and it show that there is big hope that they have seen a

light on the tunnel.



I was disappointed that Prof. k. Schallreuter didn`t come ,she was supposed to present on scientists day ,I wanted to listen her theory and

treatment in front of other leading researchers. I had a plan to take her treatment but after the conference I drop it coz I lost confidence on her

treatment..

Other interesting presentation was about environmental factors which can be trigger to general vitiligo, dr. R. E. Boissy from US show us

photo how some industry chemicals can depigment the skin in the laboratory test .he explaind industrial or commercial phenolic compounds can

first develop occupational vitiligo then it can activate the general vitiligo in the body. some of the vitiligo trigger chemicals which we can find in a

daily supermarket product like deodorants, household removers,sops, hairdye,. vitiligo trigger chemicals phenols : Catechol dervatives,

sulphydris: Hydroquinone I have noted only few, I thought the presentation will be on website or we get it on cd but it didn`t happen the

handbook we got has no all information ,

Please admin (VSI) can you contact dr. Boissy and ask him if these chemicals are out of cosmetic products, he metioned that some of this bad

phenols are not in use. If it is in use which are the most usual phnols in cosmetic products which we uses dayly.

About Phenoxyethanol which there were discussion about it on this forum. He didn`t mentioned it .is it safe ? may be scientists has found out

that it is not bad any more . . The information was not clear for me I didn`t get a chance to ask him. Please can VSI clear it out .

One of the best treatment I have observed is Cell transplantation which is presented by Thomas Hunzikeris from university of Burn in

Switzerland It was very interesting :- it shows how melanocytes which present in the scalp hair follicles can be used to treat depigmented skin.

This latest techniques is already in use, its commercial equipment was advert for other dermatologists out side. What makes this treatment

unique is while all the other cell therapies and skin grafting treatments require stable vitiligo , according to the dermatologist adverting the

technology he said that this treatment helps even for active non segmental vitligo too. They have experienced that when they implant the cell

for example on the right cheek the pigmentation has achieved on the left cheek too, it was really impressive. I could have tried this treatment

but I have decided first to stop and arrest the further depigmentation with protopic and NB UVB.

By the way there were many tables outside adverting variety of products and cover cosmetics..

Most topics ware based on research , treatment :- the common issues on the presentasions were tings which we heard about before . it is

about free radicals, oxidative stress. Inflammation ,roll of antioxidants. On the treatment base were Ultraviolets and photothrapy

immunomodulator ointments and steroids

I will just make some notes on facts and thories though most of notes are which we know already.



- Vitiligo is an autoimmune disease, in which the body attacks itself. By Dr. spritz

- Some genes that showed up in a people with vitiligo were associated with other autoimmune disorders such as Type I diabetes ,lupus

,Hashimoto’s thyroiditis. I took only those I remember.

- Children from vitiligo parents they have 6-7 % of chances of possiblity to inherited vitiligo genes combination. It doesn`t necessarily mean

that they will develop vitiligo in there life .

- Most techniques like adult stem cell therapy, cellular grafting, micropigmentation works for stable segmental vitiligo.

- NB UVB and Tacrolimus (Protopic) are mostly helpful for nonsegmental vitiligo, There is a scientific evidence on use of Tacrolimus ointment

(Protopic) and NB UVB treatment. It is SAFE SAFE SAFE even for children’s as long as it is monitored by dermatologist.

- Steroids halp to stop arrest the further depigmentation .

- One of the clinicians has shown use of ginkgo biloba has helped some of his patients.

- One of the Italian researchers has shown also early age smokers are more exposed to vitiligo ,

- There is no any scientific evidence about which diet is good or bad for vitiligo, but one of the scientist Dr. Smida Rached mentioned that it is

good to consume foods that contain omega 3 and 9 and avoid oils that contain omega 6 and he was explaining about good and bad cholesterols

If I am not mistaken I think he had a medical trial on this theory . Generally variety and healthy, balanced diet and life style is good. He has

developed orally taken oil which can help vitiligo he is working to get approved in Tunisia.

- The vitamin C usage is still unclear for me, one of elderly Indian doctor who has expriance with over 18000 patents claim taking lime juce

affect the medication progress of his patents. Other say vitamin C is an excellent antioxdant , it is good if VSI give us comment about vitamin C.

- Some doctors has discovered that a lack of vitamin D 3 is common deficiency in vitiligo patents, I followed this because I have lack of vitamin

D3

- moderate sun exposure is important to stimulate pigment cells.too much is not good as sun has all the rays that can damage our skin.



- Less stress is important specially when we take treatments it is very important to control stress. I think when we stress our adrenalin gets

high and it affect the antibodies they get intoxicated and start to attack our melanocytes . there must be a connection between psychological

stress and antibodies.

I am so happy and proud that I attend the conference specially meeting and ask to the known scientists really give me a confidence to

continue with my treatments. It was a very useful and interesting congress, listening to all this experts theory and fact from almost all the

continents most from Europe.

I really recommend to all vitis friends to attend when ever there is conference about vitiligo near you .

Most of all , watching how eager the researchers are gave me a real hope that soon they will have understanding what causes vitiligo.

I am not english speaker ,I hope you all understand my English , Thanks for reading!

Bamsegutt

Message #199224

VitiligoMom

RE: Truly hope on 1st Vitiligo World Congress

Friday October 1, 2010 3:01 PM

Thanks for the report!

Hopefully, you have received our most recent newsletter, as it is almost entirely devoted to the oxidative stress/phenols issue. There are

tables about what products contain phenols, though I don’t believe phenoxyethanol is mentioned. We have had several discussions here on it,

however. It is found in so many products, I would think it would be very difficult to completely avoid.

All the topics you mention have been discussed either in past newsletters or here in the forums. The Search function is located on the

Community menu, and you can go back several years. I believe there’s one post called Vitamin C: Friend or Foe that Lorraine posted a few years

ago that had a lot of discussion. Vitamin C is one of those things that bothers some people, while for others it’s fine.



Glad you enjoyed it!

Cindy


Mary said:

Hana,

Thank you, thank you, thank you! for your post.

I’m so thankful for all the information.

It gives me such hope that these researchers are so focused on Vitiligo.

I know in my heart that there will be a cure in my lifetime.

The Cell transplantation info is so fascinating. That is the first time I have heard about cell transplantation for non segmental vitligo. That is

really exciting because, as it seems to me, that now, Vitiligo does not have to be segmental or have a border.

# 3 October 2010 at 7:56 pm

*

Mary said:

Continuation of previous post (sorry)……as it seems to me, that now, Vitiligo does not have to be segmental or have a border.to be cured.

Even more exciting is when treated with this cell transplantion, it can effect the other side of the body as well. Non segmental Vitiligo develops

symmetrically on the body and now it seems it may be cured that way also. Fascinating.




d said:

the scientise has or better to find a cure or treatment soon because there are more and more people is geting this desea and the age is

geting younger and younger……even alot of babys gets vitiligo…..i been to alot of vitiligo forms and there are alot of young peeople has vitiligo

and say how bad the vit has on them…for me too this has a big downside to the mental health…

# 5 October 2010 at 11:17 am

*

Lee Ha said:

if the have the fund they can find the cure in one year but you all know that government does not really care about vit patients becuase it is

not going to kill us. they rather spend money on findind cure for cancer or aid is sad but is true.

# 5 October 2010 at 12:19 pm

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d said:

hi why are they spend money on mental heath…counceling ect… then…why dont they put some money on vit research caz people has all

those problem…it can damge our mental health relly bad….




catherine said:

Bonjour ZZ,

Il ya une erreur concernant le nom du médecin. En réalité, il s’agit du docteur HUNZIKER à l’université de BERNE en SUISSE. J’ai aussi un

numéro de téléphone pour le joindre grace à internet 41 31 632 2288

Bonne chance,

Catherine


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Lee Ha said:

Thank you Catherine can someone please translated


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zz said:

what is the point of this world congress?????they not even doing anything new?????

# 13 October 2010 at 8:39 am

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The point of the world conference, zz, was for all of the sectors involved with vitiligo to get together to discuss what they know- to share

information with each other in an attempt to unify and, hopefully, be able to coordinate their efforts to find a cure and, more importantly at this

very moment, improve the quality of life for everyone living with vitiligo.

here’s the one thing you should hold on to: people around the world care and everyone of them is doing their best because this is what they

spend their lives working on.

and if you’d like to rest on a more cynical view, just know that nothing would be more profitable for the companies involved than to have the

illustrious ‘cure for vitiligo’. and every scientist is racing to be ‘the one’ who found it and claim the notoriety.

# 13 October 2010 at 9:01 am

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zz said:

now the congress is over….what treatment are they working on now…..

# 28 October 2010 at 10:34 am

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Lala said:

A remarkable vitiligo treatment is now available at the Wimpole Aesthetic Centre in London, thanks to the pioneering research and

development of specialist dermatologist Dr Sanjeev Mulekar. The treatment, which is suited exclusively to stable vitiligo, is called Melanocyte

Keratinocyte Transfer (MKT) and involves the transfer of melanocytes from an area of healthy skin to an area of skin which is suffering from

white vitiligo patches and contains no melanocytes. Dr Mulekar says, “Vitiligo affects people the world over. My clinic at the Wimpole Centre is

aimed at helping some of the 600,000 people in the UK who suffer from this condition and treating those with stable vitiligo in a safe and

professional environment.”




Mary said:

Hi Lala,

Thanks for the update on this clinic.

The pictures are amazing!

Is this the same procedure that they did in Iran recently?

I’m definately staring to see more and more clinics around the world doing this. This was not the case a couple of years ago.

At least it will help people with stable Vitiligo.

Does anyone know though if it can come back in those areas treated on the body?

Anywho, this is still amazing…Yipeee!


Mary said:

zz,

Rather than complaining all the time, why don’t you become more active in your community, start a support group or canvass your area

representative.

Do some research, start to ask clinics around you, if they offer this.

If they see a need and they think they will make money on it, they will do it. The more clinics doing it, the cheaper it will become for all of us.

The only way there will be more awareness is if we make it more aware.

Also, 13 years ago the internet wasn’t as powerful as it is now!

There is more awareness and the message is getting out there.



Negativity will not help your condition, a positive mind will yield positive results!


*

Mary said:

Look at the Scenesse product, we saw it on the internet, we posted it on this blog, lots of us started to call and email the company, which

made them more aware that there was a need and it may come to fruition faster now because of the response.

It’s all good!


Lala said:

I have been for the consultation which cost me £150, and as far as I know Wimpole is the only clinic in Europe which offers this procedure.

The price I have been quoted on this is £3000, but will probably differ in patients depending on how extensive your vitiligo is. I agree with Mary

guys, we have to stay positive, God knows it can be hard but at least we’re not alone.


*

zz said:

got this infro from a website….does anyone know where we can take this treatment….its cheaper the mkt….ands its almost the same effect..

The ReCell® is actually a complete, fast as well as autologous cell gleaning, processing & deliverance new technology that in reality enables

operating surgeons as well as the clinicians to care for skin defects employing the patient’s very own cells within a re-generative procedure.

Highly-developed as actually an ‘off-the-rack’ kit, the ReCell in reality enables up a slim split thickness biopsy, acquired on at the very time of

the process, to be worked on into a prompt cell population for the delivery onto the very surface area of the discourse sphere applying an

extremely effective, as well as easy-to-use patented ’spray-on’ practical application process. Tissue ingathering, cell sequestration as well as the

preparedness of the cell suspension system takes in more or less twenty to thirty minutes in total within which time the discourse surface area is



actually set up. When prepared, the cell suspension is then on ready for prompt use as well as could cover up a discourse surface area of equal

to eighty times the surface area of the donor biopsy.

The ReCell in reality enables up the very deliverance of the keratinocytes, fibroblasts, melanocytes, as well as the Langerhans cells gleaned in

from the dermal-epidermal juncture for practical application onto a wreathed surface area in order to actually elevate speedy as well as

efficacious healing.

The ReCell has actually been clinically demoed to speed up the healing part, derogate the scar formation, do away with the tissue rejection as

well as re-introduce the very pigmentation within the hypo pigmented surface areas.

It has as well been contrived up for the employ within an all-inclusive forms of bruises, plastic, reconstructive, burn marks as well as

aesthetical procedures letting in burn marks as has been stated previously & blisters, donor sites, glabrous wounds, modest to restrained scars,

the hypopigmentation which includes Vitiligo as its main constituent as well as within aesthetic rejuvenation processes.

For the Vitiligo patients it is pretty overmuch important because of the very fact that the ReCell technology eventually enables up the cell

processing on and at the very surface area of discourse without the usance of speciated research lab faculty, and is as well important for the

Vitiligo bearers because of being both price as well as time effective.


*

lee ha said:

ZZ how is your vitiligo treament going sir? you do have any new spots? if not you in a good shape. my doctor said if you have segmental

vitiligo it will spread fast then it will stop for good. this type of vitiligo does not associate with auto immune diease. if you have vitiligo say on

both of your elbow or both side of the body that type is really hard to treated.




mary said:

Hi natalie and all others ;

I am very depressed with this condition, I have read most of the commments and suggestions. It feels good to know every one is trying to find

some type of cure! I am prensently using the excrimer 308 laser along side steroid and protopic creams.My technican who does the treatments

noticed some improvement. I am under the supervision of the dermatologist but do not get to questions him much. The treatment are

expensive 100 and up per session.But there has been an off again on again treaments.I feel those who do not have vit truely do not get it .I was

questioning the peperine approach, does any one know where to get it in Quebec, are there any pictures of comparisons,or what about the red

chili with vodka combo.I noticed spots on my hand, leg and back.I TAKE VITAMINES.IS there a support group in my province.I am truley fed up

with this condition, I PRAY MY CHILD DOES NOT GET IT. help pls.


*

zz said:

hi lea ha

how is you vit goin along too…my vit is next to my eye and under my chin…..where is your vit….have you had any sucess with you

treatment…..be paient and wait a few more years.. there will be more treatments…like the recell treatment…. Melanocyte Keratinocyte Transfer

(MKT) (too expensive).. ect….


*

lee ha said:

ZZ i have couple spots on my facial area, one on the eye lid and one on the side of the nose. so far it does not spread on me thank god for

that. i have been using protopic and uvb along with all type of veggie not red meat. I also drink lots if carrot juice. my doctor said mine vit does

not look that bad she also said if nothing work for me she will performance skin graft for me. in order to to skin graft your vitiligo or my has to be

stable for at least one year. i can do mkt too the hospital is in detroit michigtan usa. the named of the hospital is ford hospital. for now i just wait

and hope now now spots pop up. just relax man when we die the skin going to have to be burn anyway.




*

SV said:

truly ppl without vitiligo don’t get it … I’m jst praying that i pass versity this year.. It has been extremely hard sometimes feel like giving up


*

zz said:

lee ha

its good that you get to do mkt and skin graft in usa but in england there is no mkt or skin graft in normaly hospital in england….i will ask my

derm to see if i can do skin graft next time i see her….but i saw on the website that there is no skin graft on the nhs…


lee ha said:

zz if i want to do mkt i have to fly to Detroit Michigan about 2 hours to see the doctor first you cannot just schedule and have mkt done.

doctor said we need to see you first in order for us to work on you that mean i have to go back two to three time if to choose to do it.


*

VEN said:

Hello



Mary, you should be able to get peprine from any vitamin shoppe or Herbal center. I tried one from a pharmacy in NYC ( 90% peprine) and I

saw two small spots after few days of applying and as I am Lazy ( work etc..) I didn’t continue it. I think you should start your own support group

and try to get people with the condition. I dont think living in northern hemisphere where sunlight is minimal helps us. One more intresting thing

for you to follow on, when I spoke with Clinuvel with the new implant they are testing according to them they have started/ or close to start a

Clinical trial in Canada. I think Canadian’s will have access to it before people in the states I would suggest you to follow up with Clinuvel or

Canadian Clinical Trial.

V


VEN said:

Lee Ha/ZZ,

I suggest want to suggest that anything with Skin Graft or plastic surgery is recommended for people whose vitiligo is not spreading and their

is not guarantee that the spots willnot come back also this procedure is expensive, please do your research before getting it done.

V


*

zz said:

lee ha did your derm tell you how much it would cost you to do mkt????its in a normally hospital so it should cost cheaper….there is one

derm/clinic in englnad that is in london that does mkt but its privet and it cost really really expensive…?i really wish that they do this type of

treatment on normally hospital or cheaper…not many people can afford £3000 or £4000 thousand pound for this treatment…bigger area of vit

may cas 10s thousand of pounds…does anyone know how we cound make the doctors to treat our condition……why is it that when they know

that this treatment works and not use it to treat us with this type of treatment..?????


zz said:



hi people that live in london.

i have found some greatment news…..i have found that there is a clinic that does recell treatment for vitiligo…recell treatment is a great

treatment for vitiligo…here is the information i found…

look out for the recell treatment…

Vitiligo Clinic

Due to massive demand Dr Sunil Chopra is delighted to announce a clinic specialised in the treatment of vitiligo.

This is the only clinic of its kind in the UK.

Dr Chopra has a special interest in vitiligo and has had many years experience of treating patients with vitiligo both in NHS and private

practice.

Vitiligo is a common non catching skin condition affecting around 1% of the population. It can affect people of any age and of any age. Vitiligo

can cause extreme distress to sufferers because of its unusual appearance.

Until recently, people suffering from vitiligo have had virtually no access to successful treatment for their vitiligo except for cosmetic

camouflage.

With world renowned dermatologist and nurse specialist, The London Dermatology Centre is able to offer the most successful proven

treatments available to give the skin the best chance of repigmentation.

Treatments available:

• Assessment – Dr Chopra will thoroughly assess your vitiligo and medical history and discuss the best treatment options available to you.

• Phototherapy – (UVB-TLO1) and PUVA an ultraviolet light treatment which has good results in repigmenting vitiligo.

• ReCell – a procedure where the colour forming cells of ‘normal’ skin are grafted on to areas of vitiligo.

• Depigmentation – for patients with very extensive vitiligo. Counselling is available with this treatment.

• Counselling – we have a counsellor on site who is available to discuss issues relating to vitiligo and how to cope with it.




*

zz said:

am in manchester i will go to this clinic soon to get the recell treatment that is for my face..


*

lee ha said:

Congrats ZZ let know how it goes okay.


Mary said:

Hey zz,

That’s fantastic!

Doesn’t if feel good to be doing something, and you will help all of us by letting us know your results,

thanks so much!


*

zz said:



people from london could you also go to this clinic and and ask about the recell treatment tooo and ask how much would it cost..i have to

wait a few months till i got time to go down to london….(work)…but its good to know that the recell treatment is already in use and also for

vitiligo…..thanks




Vitiligo can help us, help others 6 Comments

This morning I heard a commercial for the Pepsi Refresh Project. They are looking for people, businesses, and non-profits with ideas that will

have a positive impact and Pepsi is giving away millions of dollars to fund them. Here’s how it works: you post your cause, people vote for their

favorites, and the ones with the most votes each month get funding.

Immediately I thought of us and our many quests: to find a cure for vitiligo, increase awareness about vitiligo, and our desire to learn how to

deal with the emotional effects of living with vitiligo. Surely, I thought, if I can write a great essay about our plight we would get money. After all,

it is a very important cause that affects millions of people world-wide.

So off I went to their website to begin, and what I found was a jolt of reality.

1. Dance & Art Therapy for Children with Autism and their Families.

2. Make gowns for cancer patients when hospice is called into the home.

3. Buy an Arm Bike so that disabled patients can exercise in our gym.

4. Create a sensory room for students with autism and other disabilities.

5. Create a garden to help support the local food bank.

Once I read through a page or 2 of these requests (and mind you, there were a few nonessential ones mixed in, too) I felt thankful. Thankful that

vitiligo is not life-threatening, and thankful that there are so many people in our world who care and want to help others. That’s really quite

amazing when you think about it. Each and every one of us on earth has not-so-nice issues that we deal with every day, but many are able to

step out of their own world to focus on bettering the lives of those around them.

With this in mind, I got an idea. What if we, our collective group of people with vitiligo, became benefactors (supporters) of a selected charitable

foundation? Not only would we be helping others, our actions may inspire others to give…and perhaps this would lead to worldwide attention

to vitiligo.

If you’re with me, leave a comment with some potential charities we could support. In the end, we’ll vote on one, and I will put a ‘donate now’

button on here to collect the monies to give.



P.S.

After watching, “God Grew Tired of Us”, a documentary which tells the story of 4 young Sudanese men who were a part of the ‘lost boys’, and

their life from the refugee camp to America, I decided to donate 5% of the net profits from Vitiligo Cover Lotion sales to the John Dau

Foundation.

Here is the official description of the documentary- my own just would not do it justice. And please go here if you would like to read a bio about

John Dau.

http://www.godgrewtiredofus.com/about.html

http://johndaufoundation.org/

http://johndaufoundation.org/

http://www.godgrewtiredofus.com/about.html

http://johndaufoundation.org/johns-story




I’m with you 100%

I think something to do with skin cancer would be good.

It’s one of the fasted growing cancers. In our region here in Ontario it is the highest of all of Canada. It would go to the Cancer Society of course,

but possibly we could target skin cancer specifically.

There is also the connection with Vitiligo.

Another idea would be another autoimmune disease, like Diabete, or Lupus.

What do you think Natalie?

# 17 October 2010 at 10:08 am

#


Hi Mary! I love the idea about supporting skin cancer research or anything connected to it such as rehabilitation. It’s pretty interesting that

people with vitiligo are told to stay out of the sun because we are at higher risk of getting skin cancer, yet scientists are developing a cure for

melanoma using the skin cells taken from the white patches of people with vitiligo.

# 17 October 2010 at 2:19 pm



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