What is an aminocaproic acid injection?

Also known as Amicar, this injection slows down or stops the process by which blood clots are broken down. It can prevent or

treat excessive bleeding.

What drug(s) may interact with Amicar?

• Agents that dissolve blood clots

• Factor IX

• Female hormones, including contraceptive or birth control pills

Always include all other medica-tions including non-prescription drugs, if you frequently drink caffeine or alcohol; smoke; or use illegal drugs. Check with a health care professional before stopping or starting any medicines.

Side effects that do not require medical attention:

• Diarrhea

• Dizziness

• Dry ejaculation (lack of se-men)

• Headache

• Nausea, vomiting

• Unusual menstrual discomfort

• Unusual tiredness

“You may get dizzy. Do not drive, use machinery, or do anything that needs mental alertness until you know how Aminocaproic acid affects you. To avoid dizzy or fainting spells, do not sit or stand up quickly, especially if you are

an older person. Keep medication out of reach of children in a container that cannot be opened by small children.

Store at room temperature; do not freeze Do not use if solution is discolored or if particulate matter is present.”

Other Possible Side Effects?

These side effects should be reported to your health care

professional as soon as possible:

• Difficulty breathing or shortness of breath

• Difficulty passing urine, or reduction in the amount of urine

• Lightheadedness, or fainting spells

• Loss of coordination

• Numbness or tingling in the hands, feet, arms, or legs

• Muscle aches or pains

• Red or bloodshot eyes

• Ringing in the ears

• Seizures (convulsions)

• Slow or irregular heart-beat

• Slurred speech

• Sudden or severe pain in the chest, legs, head, or groin

• Sudden weight gain or swelling”

Hemophilia Preferred Care

63 S. Royal Street Suite 710

Mobile, AL 36602

“Notify your doctor if you have

any of the following conditions before taking this medicine:

• Heart disease

• Blood in urine

• Kidney disease

• Blood clotting problems

• An unusual or allergic reac-

tion to Amicar, other medi-

cines, foods, dyes or pre-servatives

• Pregnant or trying to get

pregnant

• Breast-feeding

How should this medicine be used?

Administered by a health care professional in a hospital or clini-cal setting this medicine is for slow infusion into a vein until bleeding is controlled.

Calendar of Events:Calendar of Events:Calendar of Events:Calendar of Events:::::

• February 24, March 24th, April 28th,

May 26th and June 23rd: Tennessee

Support Group Meeting @ Memphis HPC

Office @ 7:00 pm.

• March: Hemophilia Awareness Month.

• March 10th : Oklahoma Support Group

Meeting @ Delta Café from 6:30-8:30

pm.

• March 13th and 14th : HFA.

• April 14th: Oklahoma Support Group

Meeting. Place and time TBA.

• June 12th and 13th: Louisiana State

Meeting.

• June 18th to 21st:Tennessee Annual

Meeting in Memphis, Tennessee.

• June 28th and 29th: Tennessee Golf

Tournament.

• July 10th to 16th: Missouri State

Meeting @ Lake of the Ozarks.

• July 18th to 24th: Texas Summer Camp.

• July 19th to 24th: Tennessee and

Louisiana Summer Camp.

• July 25th to August 1st: Arkansas

Summer Camp.

Gene Therapy 2

The Traveling Nurse 3

Kids Corner: Crossword Craze

4

Bumps and Bruises 5

Hemophilia Awareness Month

6

Spousal Support 6

Hemophilia Preferred Care

7

Factoring YOU In! 8

Inside this Issue:Inside this Issue:Inside this Issue:Inside this Issue: About Amicar Injection... Research by: Floyd L. Slay, Jr. About Amicar Injection... Research by: Floyd L. Slay, Jr. About Amicar Injection... Research by: Floyd L. Slay, Jr. About Amicar Injection... Research by: Floyd L. Slay, Jr.

The Clotting FactorThe Clotting FactorThe Clotting FactorThe Clotting Factor

Spring 2009 Volume 2, Issue 1

This information was provided by the Clinical Pharmacology Drug Information Handout,

Copyright 2008 Gold Standard.

“Hemophilia is a perfect candi-

date for gene therapy research:

the disease is caused by muta-

tions to a single gene. Hemophilia

could be cured if clinical trials

discover a way to replace or

"repair" the defective gene.

'Infecting' the Body with Gene Therapy

Hemophilia gene therapy re-search seeks to replace the de-fective gene with a normal, fully functional, gene. Researchers have been successful in develop-ing healthy replacement genes for use in hemophilia clinical tri-als. These genes will be carried into the body using a vector. A vector is a method of transpor-tation for the gene. Most vectors are harmless vi-ruses that are able to insert the new DNA into cells. Researchers

often use the adenovirus as a gene vector for hemophilia gene ther-apy. The virus "infects" cells with the healthy gene, overriding the mutated hemophilia gene. In clini-cal trials, gene vectors have been used to cure lab animals of hemo-philia A and B. The body's immune system does not appear to release antibody inhibitors when gene therapy is used. Future gene therapy clinical trials will involve human subjects. Hemo-philia researchers need to deter-mine if the new gene (also called a viral transgene) can be passed through sperm to future genera-tions. One potential problem is that the transgene contains extra genetic information. This extra information is required to activate the healthy gene after it "infects" cells. But it is not known how this extra genetic material will function in future generations. Hemophilia clinical trials are exploring the possibility that a patient's cells can be infected in the laboratory and then reintroduced to the body, thereby removing the chance of extra, unwanted, genetic material being passed on to future genera-tions.

Clinical Trials: Accessing New

Hemophilia Treatments

Gene therapy research may well

produce a cure for hemophilia. In

order to reach this goal, clinical

trials need human participants.

Volunteering in clinical trials

gives people with hemophilia ac-

cess to world-class specialists in

hemophilia treatment, as well as

the chance to try new treat-

ments long before they are avail

able to the general public. Hemo-

philia is a heredity disease: by

participating in hemophilia clini-

cal trials now, you can help find a

cure for hemophilia that will

benefit your children, grandchil-

dren, and future descendants.”

This article can be viewed at: www.causes-of-hemophilia.com

Gene Therapy Web Research By: Seth PriceGene Therapy Web Research By: Seth PriceGene Therapy Web Research By: Seth PriceGene Therapy Web Research By: Seth Price

Page 2 The Clotting Factor

“ The future of Hemophilia may be Gene Therapy”

Have you ever imagined what life would be like if we didn’t have Hemophilia or Von Willebrand? Now think of this, what if your children didn’t have it? Could you picture your children running around and not worrying if they are going to fall down and get a bleed? All of these questions could be answered with two simple words in the coming future “Gene Therapy”.

The Traveling Nurse By: Vicky Parker, R.N.The Traveling Nurse By: Vicky Parker, R.N.The Traveling Nurse By: Vicky Parker, R.N.The Traveling Nurse By: Vicky Parker, R.N.

Volume 2, Issue 1 Page 3

It’s a night, weekend or holiday and all of a sudden your hemophiliac child has a bleed. In the words of “Ghostbusters” Who ya gonna call? Your HPC

nurse!

You can either call the cell phone number given to you by your nurse that came for the “home visit” or the best and fastest way is to call the 1-800-757-9192 and they’ll connect you imme-diately to your nurse while you’re on the line.

I’ve had the privilege these last months being the traveling nurse for the entire state of Mississippi and west Tennessee, which explains why my 5 month old new vehi-cle now has over 27,000 miles on it! Our goal is to keep any ER visits to a minimum and teach the family/patient how to recognize a bleed, infuse imme-diately, or call your traveling nurse to come to your home and infuse.

As a nurse, which I believe is a “calling”, not a job, I’ve learned so much from my

patients and their families about courage, grace, pa-tience, humor, making the most out of life in spite of the circumstances, and I could go on and on. With one family in Mississippi I en-joyed “jamming” on the gui-tar and with another older mom I heard her incredible

personal stories about raising 2 sons with hemo-philia before the “prophy” days and recombinant factors. Each family has its own challenges and meets those with incredible faith and courage,

which inspires us all. From the new mom of a hemophiliac child learn-ing how to care for their child through the many growth and devel-opment stages, to the young man learning to take responsibility for his infusions himself and doing them successfully, it’s all about educating ourselves to be prepared

for the unexpected, conquering our worst fears, and triumphantly manag-ing those circumstances so in turn we can help those who follow. They will need our encouragement and our ex-ample. I want to thank each and every one of my Mississippi families who have allowed me in your homes to share and care for you . I would also like to let you know that I am transi-

tioning to nursing west Tennessee Patients (who seem to number more each week!). I have been truly blessed by you more than you’ll ever know. Also, I’m still avail-able to all of you if you have any needs; you can contact me on my work cell of course or the 1-800-757-9192 HPC num-ber. Thanks again to all the wonderful Mississippi families and your children who have meant so much to me.

1 2

3

4

5 6

7

8 9

10

11

12

Kids Corner: Crossword CrazeKids Corner: Crossword CrazeKids Corner: Crossword CrazeKids Corner: Crossword Craze

Page 4 The Clotting Factor

ACROSS

1. Greek word " to love". 3. Because the "gene" is taken from the mother it is _________. 5. Another name for Factor VIII Deficiency or Hemophilia B. 7. True or False: A Hematologist is a physi-cian who specializes in bleeding disorders. 8. Factor IX Deficiency is also known as ___________ Disease. 10. Antibodies formed against replacement factors. 11. von _____________ is more common in women.

DOWN

1. A scheduled treatment which is consid-ered a form of prevention for spontaneous bleeds and those caused by injury. 2. Which queen was known to pass hemo-philia to her descendants. 4. Greek word Haima. 6. An individual who possesses the gene for a condition, but does not necessarily have the condition. 9. If there is no history in the family of the disorder it is considered to be _______________ mutation.

ANSWERS:

Across:

1. Philia 2. Genetic 5. Classic 7. True 8. Christmas 10. Inhibitor 11. Willebrand

Down:

1. Prophylaxis 2. Victoria 4. Blood 6. Carrier 9. Spontaneous

S ta ndards of Servic e Banessa Pr ice S ta ndards of Servic e Banessa Pr ice S ta ndards of Servic e Banessa Pr ice S ta ndards of Servic e Banessa Pr ice

Page 5 The Clotting Factor

Preschool One of the biggest challenges for this age group may be a change in environment. If your little one starts attending a pre-school, there may be many concerns about the classroom and play ground. Set aside some time to go look around. This will help you and your child’s teachers to be more comfortable. Also go over some simple first aid such as R.I.C.E. (Rest, Ice, Com-pression, and Elevation). Make sure there are supplies for your little one available such as ice packs, ace wraps, gauze, tape etc. Another important thing to do is edu-cate those caring for your child on the signs and symptoms of a bleed, and to stress the importance of listening to the child if they say they are hurt even if they are not able to see any signs of a problem. At his age you can start teaching your little one how to tell if they have a bleed. However be sure to look for de-creased use of an extremity and/or pain. At this age they may hesitate to tell par-ents or teachers about a bleed due to the fear of being stuck. Just stay calm and matter of fact and always teach them that the sooner they get their factor the sooner they can get back up and play. You can also let them become more involved in the infusion process. They can help gather the infusion supplies and can start learn-ing to mix their factor.

Grade School These little guys are growing and becom- ing more independent. At this age comes the definite stress of starting school, PE, and recess activities. Make sure the school staff and teachers are educated on your child’s hemophilia. Ask your HTC or home care nurse for an in-service if needed. Remind your child to report any injury on the playground or PE immedi- ately in case of the need for factor. An other new challenge at this age may be how to deal with your child having a loose tooth. First of all DO NOT pull the tooth out until it is good and ready. It is best for it to fall out on its own. If the gum begins to bleed there are many different things you can do. If prescribed, use Amicar as directed by your doctor. You can also have them bite down on a 2x2 of gauze rolled up, or a wet caffeine- ated tea bag (the caffeine in the tea helps to constrict blood vessels). But if the bleeding continues it is common for them to need factor. Mouth bleeds are always hard to stop given the added trouble their saliva brings. Consult with your nurse or doctor if you have any questions or concerns.

Junior High At this age a need and desire for inde- pendence is coming to the forefront. Decisions about extra curricular activities are upcoming, and peer pressure is ever increasing. It is important for your child to be involved, but not at the expense of their well being. Convincing them of this is easier said than done. Making sure as many options are available as possible is key. Swimming, art, academic, and church programs may be great alterna- tives to more physically demanding activities. However they may have the options of basketball, soccer, baseball, or track if approved by your child’s doctor. A key to them safely enjoying any activity is to use proper safety equipment for each sport. Make sure both you and your child know the signs and symptoms of a joint or muscle bleed. If you have any questions about this ask you HTC or nurse to go over them with you. Also monitor how your child’s body is af- fected by the activities they participate in. Make sure factor is readily available if needed for any injury or bleed, and again always follow your HTC recom- mendations and treatment plan.

In the next issue we’ll have tips for pre-school through junior high age kids. If you have a helpful

tip you would like to share please email them to dhumphreys@hpcinternatinal.com

and I will be glad to add them in one of our newsletters.

As our little ones grow and change so do the challenges that come with their bleeding disorders.

Don’t be afraid to put them down and let them go.

Bumps and Bruises By: Danelle Humphreys, R.N.Bumps and Bruises By: Danelle Humphreys, R.N.Bumps and Bruises By: Danelle Humphreys, R.N.Bumps and Bruises By: Danelle Humphreys, R.N.

It is important for us to remember that it is our duty as family mem-bers and patients that deal with a bleeding disorder to help educate the world regarding these bleeding disorders so that they may under-stand and support our endeavors to help find a cure.

After all who cares more about a bleeding disorder than us? It af-fects us everyday of our lives.

We should at least make the commu-nities we live in aware of these sim-ple facts as were proclaimed about bleeding disorders by Jennifer M. Granholm, Governor of the State of

Michigan in 2006. We should endeavor to get this information out to the pub-lic every chance we have to increase education of this disease.

1. Hemophilia and Von Willebrands disease are genetic diseases in which blood does not clot properly because specific clotting factors are missing.

2. These disorders are genetic and therefore incurable at present and can only be treated through intravenous administration of replacement clotting factor.

3. The replacement of clotting

factor required from such treatment is extremely costly and beyond the financial means of nearly all individuals

4. Research continues towards a cure for Hemophilia, Von Wille-brand’s and other bleeding dis-orders.

knowledge we both have together. Our fears revolved around the side effects of treatment. Seth is a man with a vi-brant personality, who is happy go lucky and loves to make people laugh; now his major concern is how the treatment will affect his attitude. What we learned from our fear is that it is normal to feel this way and that to say that being fearful is irrational would just be kid-ding ourselves. Ultimately, if you be-come knowledgeable about treatment and learn all you can, it gives you a sense of preparedness.

Then comes the sadness; we planned on having children this year. He was ready to be a father and I really wanted to be a mother, but our plans quickly changed. We took a step back from it all and just realized it’s better now then later. Seth and I can focus on his health. We will not have to worry about all the beauti-ful, but still demanding parenting. After treatment, we will both be able to enjoy parenthood.

I first met my husband over 4 years ago. He told me that he was a Severe Factor VIII Hemophiliac who had been exposed to Hepatitis C while on a factor product. He tested positive in 1992 during an occurrence when many factor products were discov-ered to be contaminated with the Hepatitis C and the HIV virus. I had no idea what hemophilia was, but I was aware of the Hepatitis C virus and its effects on the body. Sur-prised that I was unaware of bleeding disorders, Seth began to educate me. I became very interested and soon hoped to dedicate my time to the community. I almost immediately be-gan to attend meetings, Texas camp, and started some of my own research.

Seth and I got married in July of 2007. Up until now his Hepatitis C has been dormant and when we received the news this month that he would have to start treatment, our reaction was fear and sadness even with all the

As a spouse, we sometimes feel like we’re on the sidelines, but we can make a major impact, not only on the lives of our husband or wife, but also on the people who are part of the bleeding disor-ders community. Do not be afraid to get involved and don’t be afraid to ask questions. We are also caretakers, we are support and sometimes need sup-port ourselves. We are the men or women our partner has chosen to share their life, community, and bleeding disorder with. Advocate and make the world aware of the network of family we’ve been invited to join. Remember: There are so many people who have never heard of Hemophilia or Von Willebrand’s and I was one of them.

Hemophilia Awareness Month By: Debbie Little, R. N.Hemophilia Awareness Month By: Debbie Little, R. N.Hemophilia Awareness Month By: Debbie Little, R. N.Hemophilia Awareness Month By: Debbie Little, R. N.

Spousal Support By: Vanessa PriceSpousal Support By: Vanessa PriceSpousal Support By: Vanessa PriceSpousal Support By: Vanessa Price

“ It is normal to feel this way and that to say that being fearful is

irrational would just be kidding ourselves.”

Volume 2, Issue 1 Page 6

www.hpcinternational .com

Hemophilia Preferred Care

63 S. Royal Street

Suite 710 Mobile, AL 36602

1-800-757-9192

Volume 2, Issue 1 Page 7

At HPC we handle our own billing collec-tions for the convenience of our patients. We maximize our patient’s benefits by handling reimbursements, billing issues, and insurance. We at HPC are keenly aware and work to monitor factor usages to prevent life time maximums from be-ing exceeded. We structure our billing in order for the patient to get the most for their coverage. We also make it easy to speak directly to a person and not a machine.

We would really like the community to be involved in the proc-ess of this newsletter and urge you all to please share your stories or comments for educational purposes. If you have any suggestions or would like us to do some research on a particular issue that concerns you, we will make an effort to answer those questions in future issues of this newsletter. Please feel free to send comments, questions, or stories. If you would like to keep your identity anonymous we are more than willing to do that for you. We look forward to hearing from you!

Email me:

Vanessa A. Price

Hemophilia Community Advocate

at

vprice@hpcinternational.com

Factoring You In !

Page 8 The Clotting Factor

Your Opinion Your Opinion Your Opinion Your Opinion Counts!Counts!Counts!Counts!