On The Move edition 3 - 2014

Juvenile idiopathic Arthritiswww.arthritissa.org.au

UnderstAnding

COnTenTs edition 3 2014

8 FEATURE spOTlighT On Juvenile idiOpaThiC arThriTis

4 Ceo’s rePort - WelCome

5 President’s rePort

6 it’s time to move: JiA

10 reseArCh

11 neWs

12 kidsflix neWs

13 events

14 kids Corner

Cover picture: gail Fursenko

arthritis Foundation of south australia inc.incorporating Osteoporosis sa,118 richmond road, Marleston sa 5033

Telephone: (08) 8379 5711Country Free Call: 1800 011 041 Fax: (08) 8379 5707email: info@arthritissa.org.auWebsite: www.arthritissa.org.auaBn: 53 784 654 861

editor Julie Black Telephone: (08) 8379 5711 email: julie.black@arthritissa.org.au

Advertising enquiries Telephone: (08) 8379 5711 email: celia.painter@arthritissa.org.audesign Celdesigns Telephone: 0412 824 463 email: celdesigns@bigpond.com

published november 2014

disClaiMer: views expressed by contributors to On The Move, and advertisements appearing in the publication, are not necessarily endorsed by the arthritis Foundation of south australia.

vision statement

“To improve the quality of life of people with arthritis and related conditions.”

mission statement

“To be recognised as the leading provider in sa that empowers people with arthritis and related conditions. To achieve the best quality of life through advocacy, education, self-management and the support of research.”

Aims

•toprovidefundsforresearchprogramsinordertofindacureandbettertreatments.

•togivepracticaladviceandsupportto people with arthritis and other musculoskeletal conditions and their carers.

•toorganiseeducationprogramsforpeople affected by arthritis and other musculoskeletal conditions, their families and carers, health professionals and awareness in the wider community.

valued donationsarthritis sa values your donations to help provide services and support to the many thousands of south australians who suffer from musculoskeletal conditions. donations can be made by telephone on (08) 8379 5711 or Country Freecall 1800 011 041. alternatively, secure online donations can be made at www.arthritissa.org.au

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SUFFERERS

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On The Move | Summer 2014 On The Move | Summer 2014

it was indeed a pleasure to report on the successes of arthritis sa at our OctoberAGM.Inaclimateofdifficulteconomictimes,ArthritisSA’sBoardandstaff members have worked incredibly hard to build on the many successes of recent times.

in the past 12 months the team at arthritis sa doubled the number of contacts (compared to the year before) with people who have arthritis and other similar conditions, including carers and family members. Our health services team has worked hard developing and delivering both a new face-to-face course and also an on-line course for health professionals. This outcome is testament to the commitment of the team to implement broad ranging strategies that ultimately support consumers.

With arthritis covering an umbrella of over 120 forms of muscular skeletal conditions,thesupportofresearchisattheforefrontoftheBoard’smind.Tothisextent in the last year, the Foundation doubled the amount of research money to support both national and state research projects. a total of $220,000 was provided for research.

With our fast-paced world, social media has become an accepted form of communication. arthritis sa has therefore put a great deal of time and energy into ensuring its website is regularly updated and easy to navigate, and that the organisation is active on facebook and twitter. This enables the organisation to respond to our members when and how they want to receive information. This area has grown effectively each month.

good governance is essential for the success of any business and a not-for-profitisnodifferent.Throughgoodmanagementandinnovation,ArthritisSAwas once again able to reduce overheads while continuing to deliver extensive education programs at a reduced cost.

While the successes are many, these could not have been possible if it were not for the generosity of our many donors and supporters - such as people like you. Your kindness and commitment has placed arthritis sa in a position to expand our reach even further in the coming year.

arthritis sa will celebrate its 40th Birthday in april 2015 and i invite you to be part of this celebration. We are at present compiling names of addresses of those involved with the organisation right from its inception and i ask if you have any memorabilia or information that you contact Celia painter at our offices.

Finally, i would like to take the opportunity to thank each and every one of you for your ongoing support and to wish you a safe and healthy Christmas.

Colette smithpresident

preSIdenT’SrepOrT

WelCome toedition 3 - 2014as we head towards the end of 2014, it is pleasing to report on another very successful year for arthritis sa. in particular, over 10,000 contacts were made during 2014, supporting the one in four south australians with arthritis. This included support being provided through our telephone support service, community talks, courses and classes. in addition, our website hits and social media have grown considerably this year.

a focus was put on our monthly e-newsletter, distributed 10 times during the year. With close to 1,000 people receiving this each month, it has been a valuable form of communication. please contact us with your email details if you are not receiving this.

Our Take Charge of life programs have been particularly successful, especially the Take Charge of pain course. We have ensured that all courses have been evaluated effectively and we have made adjustments accordingly. dr. elizabeth hoon from the university of adelaide has been a key part of this important process. This program is now being offered in other states.

it is exciting to see the large increase in attendances at our programs with courses running regularly at local community level. This has been thanks to the support of many local council grants. Monthly consumer programs have had large attendances and will continue to be offered free of charge to our members in 2015.

MembershipisavitallyimportantpartofArthritisSAandoffersmanybenefitsincluding opportunities to attend workshops and seminars at no cost. please consider renewing your membership today if you have not already done so.

Anationalstrategytoreducethefinancialburdenofmanagingarthritiswaslaunched at parliament house in Canberra this year. it is known as Time to Move arthritis and provides clear models of care to assist in the management of arthritis. Following on from this, the national health & Medical research Council has awarded $2.5m for the creation of a Centre of research excellence dedicated to translating research into improved outcomes for musculoskeletal pain and health. The project is being led by the university of Melbourne and the Chief investigator/Coordinator is prof Kim Bennell. This is good news for all people in australia with arthritis and i look forward to providing you with further information as it comes to hand.

The coming year is extremely exciting as our commitment to research by our organisation at state and federal levels grows. in 2015, we will also celebrate the 40th birthday of arthritis sa - something we should all be proud of.

a big thank you also to our dedicated and committed volunteers, staff members, Board and Members who give so willingly to support arthritis sa. To our supporters and donors who have also chosen to passionately support arthritis sa, which has in turn allowed us to make a true difference to so many people, i thank you.

Finally, i would like to wish you all a very Merry Christmas and a safe, happy and healthy 2015.

Julie BlackCeO

CeO’SrepOrT

Wishing everyone a Merry Christmas, & a safe, healthy and happy 2015.

arthritis sa will be closed from Friday, 19 december until Monday, 5 January 2015.

income by department expenditure by departmentinvestments

5%health services & research 28%

health services 4%

Administration 7%

fundraising 91%

fundraising 65%

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On The Move | Summer 2014 On The Move | Summer 2014

Many of our long term members may have followed SarahHammond’sstory.Sarahisayoungwomanconsidered by many to be the face of Juvenile arthritis in south australia. she is overcoming a lifetime of pain, inactivity and considerable isolation to work as a personal trainer.

sarah hammond, a south australia ambassador for Juvenile idiopathic arthritis (Jia) since early childhood, is undertaking business management studies to complement a new active lifestyle that seesherencourageotherstomove.Sheisaqualifiedpersonal trainer and enjoys the irony of being the one who helps people who some might consider to be “healthier” than her.

“My family found out i had Jia when i was 18 months,”Sarahsaid.“Iwasshufflingonmybottomalongthefloor,andthenstartedtowalkforafewweeksandthenwentbacktoshuffling.ThedoctorsbelievethatIdidn’tcrawlbecausebeingonmykneeswould have been painful.”

The impact of Jia for sarah, whose condition has been extreme since that time, was devastating. arthritis affected and still affects her joints, internal organs and eyesight. The severity meant that as a child sarah watched others play, but was unable to join them, and when very young, she spent a lot of time travelling from her home in the adelaide hills to attendappointmentswithdoctorsattheWomen’s&Children’sHospitalatleastonceortwiceaweek.

“i felt like a little outcast girl with an outcast disease,” said sarah, “because nobody i knew, knew that kids get arthritis too. They only knew that the elderly can have it. i have never met anyone else who suffers with Jia as severely as me – affecting so many parts of the body – and so i had nobody to look up to. so, i became my own hero and still am.”

now aged 21, she said exercise combined with medication, administered once per month as a hospital inpatient, was managing her condition, with exercise being one of the most rewarding and

inspiring tonics. When she was younger, she despised exerciseandwouldfinditboring.Beingolder,shesaid she could control her movements and saw how effective exercise could be.

sarah said she “accepts no excuses” with her personal training clients and hoped her own tenacity inspired those she was guiding. diminutive, blonde, and with big blue eyes, she said her looks deceived – she was made of tough stuff.

“IfyougivemesomethingtodoI’llprobablydoitbetter than many able bodied people,” sarah said. “I’velearnthowtodothingsandhowtogetaroundproblems from having Jia. That includes working through the emotions of having a chronic, painful condition.”

despite there being no cure and an occasional feeling of hopelessness, sarah said her vision of her life in 20 yearswasoptimistic.“I’dliketohaveanewrighthip.i want to see out of both my eyes, have no arthritis and spread the word that kids also get arthritis. Just being independent and not relying on others as much because of my condition would be great too.”

sarah said her early childhood had been particularly tough on her mother – well-known arthritis sa fundraiser Marjorie hammond - and her grandmother, who together had taken her to countless appointments withdoctorsandsupportedherthroughdifficultiesshe had faced. she felt it had also been tough on her younger brother, with her needs drawing attention.

The fact that sarah turned 21 this month and lives an active, complex life full of volunteer work with children and adults in her local community, as well as running her own personal training business, is a tribute to her, her family and all those who have supported her. in addition to this, her mother, Marjorie, has been with arthritis sa for 20 years and has raised nearly $20,000 for research into Jia over this time. Both continue to be active members of arthritis sa.

sArAh moves AheAd With A

new beginning

FeaTure FeaTure

iT’s TiMe TO MOve On JiA

• JuvenileIdiopathicArthritis,oneofthemostserious and chronic conditions of childhood, is inflammatoryarthritisthatbeginsbeforetheageof16 years and lasts for at least six weeks.

• WhatcausesJIAremainsunknown,despitehugeadvances in knowledge and treatments over the last couple of decades.

• Oneinevery1,000children–that’s5,000littleaustralians – is affected by Jia. Their conditions fall into seven sub-groups.

• AyoungsteraffectedbyJIAmayexperiencestiff,painful and swollen joints. some forms also affect other organs, like the skin and eyes.

• Symptomsvarysignificantlybetweenchildrenandfrom day to day.

• Flare-ups,oftenreferredtoas“flares,”areunpredictable yet common.

• JIAresolvesformanychildrenbutthediseaseremains active for 50 per cent of those diagnosed with Jia.

• Leftunchecked,JIAcancauseseverejointdamage,growth abnormalities and permanent disability. it can also cause other complications, such as problems with the eyes.

a blueprint to improve the future for children with arthritis and reduce the costly burden to individuals, families and the nation has been developed by arthritis australia.

The national strategy, developed with substantial input from arthritis south australia, builds on dramatic advances in treatment for Juvenile idiopathic arthritis (Jia) made over the past decade to ensure a brighter and easier future for those living with the condition. It’soneofthreemajorstrategiesthatcomeundertheTime To Move banner. The others include Time To Move arthritis and Time to Move Osteoarthritis.

TimeToMoveJuvenileIdiopathicArthritisidentifieskey problems and makes recommendations to ensure that australian children suffering from Jia receive the best possible care and support. it recognises that care varies in different australian states, with some states not even having one paediatric rheumatologist.

The report, which can be downloaded in entirety from ArthritisAustralia’swebsitewww.arthritisaustralia.org.au, forms the basis of political advocacy work of direct relevance to the 5,000 australian children currently suffering from Jia and those who will be born with Jia –that’soneineverythousandtinyAustralians.

Key recommendations of the report support the following objectives:

• developmentandimplementationofstrategiesto increase awareness and understanding by the public, health practitioners and policymakers of Jia and the importance of early diagnosis and treatment

• SupportfortheearlydiagnosisofchildrenwithJIAand the urgent referral to paediatric rheumatologists for a prompt start of therapy

• provisionofequitableandtimelyaccesstoindividualised, coordinated multidisciplinary team care by appropriately skilled practitioners led by a paediatric rheumatologist

• Improvementstoageappropriateandculturallysuitable information, education, coordination of care and psychosocial support to children and young people with Jia and their families

• OptimisationofpharmacologicaltreatmentforJIA

• Improvementstotransitionplanningandcareforyoung people with Jia moving to adult services, commencing in early adolescence

• Anincreaseinworkforcecapacitytosupportearlydiagnosis of and effective treatment for children and young people with Jia.

What affects 5,000 little Australians?

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On The Move | Summer 2014 On The Move | Summer 2014

Therecentparents’Connectdayproducedarevelation for a Western suburbs family living with arthritis.

a mother, Mel, father, paul, nine-year-old Meg and Jock, aged 11, had an experience that gave them insight into how the youngest family member, lucy

agedfiveisphysicallylimitedby arthritis.

The parents Connect day provides an opportunity for families to meet others as well as arthritis sa health professionals and on this day they were given the chance to try on a pair of the arthritis wire gloves. They are designed to simulate the feeling of having arthritisinthehands.Itwasthen,accordingtoLucy’smum Mel that “the penny dropped”.

“We were blown away by the experience,” said Mel. “The fact that it was really hard to close your hand wasreallyinteresting.TherealityofLucy’ssituationreally hit home with Jock and Meg - even though tryingontheglovesdidn’tgiveanyindicationofthepain that comes with arthritis.”

acute pain never seems to have been an issue for lucy. she is a lover of cuddles and keen on drawing and creating from play dough. This is despite having arthritisinherfingersandwrists,aswellasinotherparts of the body.

But chronic aching and fatigue have been the bane of Lucy’slife.

“lucy likes to lie on the couch - a lot,” said Mel, “and i would tell her to stop being lazy and stop

complaining. she was always saying her legs were tired, or she was tired. We live only about 700metresawayfromtheschoolandwhenI’d

walk the other children to school lucy would come with me, but she would nearly always say‘mylegsaretired,’sometimesbeforewe even got out of the gate. When lucy was four, i threw away the pram and just expected her to get on with it.”

Mel said it never occurred to her that lucy could have a condition like arthritis, even though she knew of the debilitating condition.

“i was born with dislocated hips and i was mindful of that when the children were born and had them checked,” said Mel. “When wenoticedLucywasn’twalking,we took her to two doctors and had her checked…but there was nothing.”

Mel felt like “the worst mother in theworld”whenLucy’sJIAwasfinallydiagnosed,severaldaysbeforeherfifthbirthday.Feelingsof guilt are hard to overcome, even though parents are told about thedifficultiesofdiagnosingJIAbecause symptoms can by typical of many conditions.

FeaTure

Buzzy Bee - A new Welcome Pack

We’re abuzz about Arthritis sA’s new Welcome Pack

A fun and colourful “buzzy bee” wristband will soon help take the sting out of injections for some little tackers with arthritis. the buzzy bees are designed to block sharp pain and distract a youngster by vibrating on their arm as they receive an injection.

Buzzy bees are among items that will be included in some Welcome Packs, tailor made to the age and diagnosis of children and teenagers just diagnosed with an arthritic condition.

the Welcome Packs introduces Arthritis sA and its services to help the child or teenager, as well as their parents. the family also receives various resources to make living with JiA easier, plus news about Arthritis sA’s many events, activities and opportunities to get involved, stay informed and network with others.

the Welcome Packs are being made possible through a generous donation of $8,000 made by the Commonwealth Bank’s staff Community fund.

“i think i was in shock when she was diagnosed,” said Mel.“TherheumatologistattheWomen’s&Children’shospital was wonderful explaining things and assured methatIshouldn’tfeelguilty,butitishardtofindoutyour child has had something like this.”

The trigger for the diagnosis came when, while on holiday, Mel noticed lucy had a swelling in her knee. Mel took her to the doctor, who referred her to the only paediatric rheumatologist in south australia. Thatwasjustthebeginningofthefamily’sjourneyoflearning about Jia and how to manage it.

“I’vebeensurprisedbythenumberofpeopleittakesto manage the condition,” Mel said. “There are the doctors, occupational therapists and physiotherapists and next month lucy has an appointment for orthotics. i know rheumatoid arthritis can affect the jaw and it will also be worth taking lucy to a dentist who knows what to look for.

Mel’sthoughtsarecentredontheimmediatefuture,havingasplintorganisedforLucy’swristandfingersto help minimise further damage of the joints that help herdohermuchlovedcraftwork.Thenthere’sballet–lucy wants to be a ballerina – and school next year.

“We’llseehowshecopeswithballet,”saidMel.“Idon’tdiscourageherwhenshewantstodosomethingbecausetheexerciseisgoodandI’mnotreallythatworried about school next year. Of course, school is goingtobeachallengeforher.Forexampleshewon’tbe able to carry the big school bag on her back like theothers.Also,I’llhavetotelltheteachersthatshe

might be slower in doing some things. it is reassuring to know that there is so much support and i know that arthritis sa will also be there to support us when we need it.”

Parents Connect connects the dots for a family living with JiA

Pictures taken by: gail Fursenko

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On The Move | Summer 2014 On The Move | Summer 2014

new research suggests that young arthritis sufferers make decisions based on how treatment will affect their appearance, their social life and their physical and mental well-being. The research also suggests that young people are concerned about whether treatments could threaten their day-to-day life.

Inflammatoryarthritis,agroupofconditionsincludingjuvenile idiopathic arthritis (Jia), rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, can need aggressive treatment including the use of biological therapies. For young people, making these crucial treatmentdecisionscomesatadifficulttimeintheirpersonal and disease development. it is vital that the right decision is made because these decisions can have profound consequences.

The research, funded by arthritis research uK at newcastle university, included interviews with 25 16–25yearoldswithinflammatoryarthritis,suggested

that young people judge biologic treatments on their potential to help them to lead a normal life. While they understand the potential long-term risks of these therapies, they feel bound to accept these risks in order to improve life for the foreseeable future.

The research also suggests that the emotional, social and vocational consequences of side-effects of treatment can be central for young people. generally, patients value treatments that help them to live a normallife.Howeverperceptionsofa‘normallife’are different depending on age, condition and their treatment.

The researchers conclude that “young people need support and encouragement to explain how treatment helps or hinders normal life, so regimens canbeclarifiedand/oradjustedinordernottobeunnecessarily restrictive.”

Article originally published by Arthritis Research UK.

With the holiday season not far away travelling with a chronic condition can be challenging and this is even more so for people with scleroderma.scleroderma is a very individual auto-immune condition, considered to be a form of arthritis, and can vary greatly from one person to another, often hardening the skin.

if you are planning to travel overseas, it is important to discuss this with your specialist and obtain a letter stating the medications you will be travelling with as you may be required to present the letter to customs officers.

Whileinsurancecansometimesbedifficulttoobtain,it is essential that you obtain travel insurance before you leave.

Our TOp Tips to remember are as follows.

1. keep your medication in your hand luggage so it does not go missing.

2. discuss if you need assistance in getting on and off the aircraft with the airline before you start your journey.

3. Ask your doctor for an emergency plan to put into action if you should you become unwell.

4. Carry a supply of antibiotics to tackle infections and know when or if you should start taking them.

5. Ifyourlegsarepronetoswellingwear“flightstockings” and stretch regularly.

6. Check that showers are not over a bath when booking accommodation if movement is challenging.

7. Arrangements with airlines, usually through their medical or special services department, need to be done well ahead of your departure.

8. Ifyouneedoxygentherapyduringaflight,thiswill need to be organised and booked for each “leg” of the journey.

9. Plan rest times during your holiday and consider early check-ins or late check-outs to allow more time for you to rest.

10. have a wonderful time.

Sympathyforchildrenandtheelderlyafflictedwitharthritis has been the driving force of one of arthritis SA’smostdynamicvolunteers,HeatherMacgowan.Whispering also into her consciousness is a precise memoryofoneofhermother’sselectpiecesofadvice:“Whatever you do in life heather, just promise me you won’tbecomeacommunitypest!”

The memory is met with a stout chuckle but heather freely admits: “it does make me want to do more, to give back to society and use my time wisely and be useful and community-minded.”

heather joined the volunteer ranks of arthritis sa about six years ago, selling badges in glenelg in close proximity to her home at glenelg east. she loved the social aspect of the activity and over a period of time has become more actively involved with other volunteering activities at arthritis sa. Today, she is oneoftheorganisation’smainstayadministrationvolunteers. she has folded thousands of letters, packaged hundreds of Christmas cards and has undertaken all sorts of other administrative activities.

volunteering in an administrative capacity is “in Heather’sblood.”Shewasasecretarialtempduringher working life, working for some of the biggest names in south australia, as her skill with shorthand

opened many doors in the corporate and business world. a high was the opportunity totakeseveralflyingvisits as a stenographer to opal mining town Coober pedy. however, her working life has not always been highfalutin. she has done stints in many jobs, including working as a dishwasher and cleaner at uluru. she had headed to “the big red rock” with her trusty typewriter in tow. artistic by nature, it was old trusty that saw her survive lonely times at the red centre.

It’shelpingoutatArthritisSAthataddsanextradashofpurposetoherlife.“Iguessit’sironicthatIdon’thavearthritis,”shesays,“butI’vespentplentyoftime in the nursing home industry witnessing people inpainasaresultofarthritis.Youcan’thelpbutbemoved by that and to know that children suffer from this too, is just intolerable.”

if you would like to discuss volunteering, contact ArthritisSAprojectOfficer,KateTymons,on 8379 5711.

researCh neWs

The Adelaide Orthopaedic & Trauma Specialist team celebrate their marathon finish

Arthritis sA educator leanne vuong receives a cheque for a grant from Burnside City Council mayor david Parkin that will enable Arthritis sA to run a series of take Charge of Pain courses as well as give an Arthritis Aware talk.

Burnside Council helps us to take charge of pain

Young arthritis sufferers choose treatments that make life normal

running FOr arThriTisTwo adelaide orthopaedic surgeons vowed to show their peers and patients that you can have a busy lifeandgetfitatthesametime.drChien-WenLiewand dr robert Fassina, from adelaide Orthopaedic & Trauma specialists, ran the adelaide marathon to support a cause close to their bones – arthritis.“Many of our patients suffer from arthritis, and we are seeing more and more younger patients who have developeddisablingconditions.Wefindthatthefitterthe patient, the better the outcomes” said dr liew, hip, Knee and shoulder surgeon.Together they raised an amazing $10,000, which will go towards arthritis research.One month after the marathon an energetic subnet-arthritis sa team participated in the City-Bay Fun run. runners, walkers and joggers made the 12km journey to glenelg with gusto. The team raised funds and

much needed awareness for arthritis. Thank you to everyone who participated and supported these two outstanding teams.

Volunteers make a difference: Heather

Top Tips when travelling with scleroderma

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On The Move | Summer 2014

Kids Flix neWs evenTs

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TTheKidsflixprogramhasbroughtsmilestothousandsofchildrenthisyear.Kidsflix,anationalprogram of arthritis sa, provides children living

with a disability, chronic illness or social disadvantage and their families an opportunity for a much needed, positive family experience at the cinema. nine events were held throughout south australia this year, with nearly 5,000 children and families attending both metropolitanandregionalevents.Formany,itisthefirsttime they experience the wonder and excitement of the big screen. Financial circumstances or medical reasons make this activity out of reach for many.

arthritis sa now manages the national program of 30 events, and endeavours to keep each event different and exciting; with continuous effort made to ensure new schools and organisations are involved.

duringChristmas,Kidsflixisevenmorespecial.FatherChristmas will make a special appearance and his elves will help deliver Christmas goodies to children. a big thank you to Toymendous for generously donating beautiful handmade wooden toys, which will be distributed at one of the two Christmas events. Face painting, balloon twisting, Christmas craft and giant games will guarantee fun is had by all.

2015isshapinguptobeanotherbusyyearforKidsflix,so this Christmas, sponsor a child or a family to attend a Kidsflixeventnearyou.Yourvaluedsupportcanmakeareal difference.

Call (08) 8379 5711 or country freecall 1800 011 041 or visitwww.kidsflix.org.au

suppOrTers Bring JOY TO YOunger sOuTh ausTralians With a Kidsflix silver screen experience

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Fundraisers succeed in a lofty challenge

Calling all walkers for 2016

Ten fabulous fundraisers scaled new heights in september, raising more than $50,000 for arthritis sa bygainingfinancialsupportandgoodwill for their gruelling trek in the himalayas for the northern india Joint effort Trek.

leading the fundraising charge was arthritis sa Chief executive Officer,JulieBlack.eachtrekkerraised a minimum of $3,000 for arthritis sa. Many raised much more.

in addition to Julie Black, the deftly footed fundraisers included arthritis sa Board member, Tracey powell, who was one of the self-proclaimed group Tiara Trekkers, also including rebecca petrucco, leanne hegarty, Jodie rowe and JulieKite.Alsotrekkingtobenefitarthritis sa were prue Cowled, anne Johnson and Julie and Brian hales.

every cent raised from the trek, a walking event held in a challenging but beautiful environment every two years, goes to support the one in four people

in south australia who suffer from arthritis.

Julie said she personally found negotiating the himalayan mountain more challenging than fundraising, but added:

“it was an amazing trip and hiking in the himalayas was breathtaking. india is very much a country of incredible contrasts from the bustling packed roads of delhi to visiting a Tibetan village that is home to 13,000 children.

“With late monsoonal rains, the trek in the north of india was extremely difficult.Knowingwewereallwalkingfor such a good cause and making a difference to people with arthritis made it all worthwhile.

“events such as these not only help raise vital money but also help raise the awareness of arthritis at a community level”.

HotontheheelsofthesuccessofArthritisSA’sIndiaJointTrek,afivedayhikeintheHimalayas,arthritis sa is calling for expressions of interest for its spectacular 2016 trek.

It’sgoingtohoneinonethemajestyandthemagicofnewZealand’sMilfordSoundinFebruary2016.

This trek is expected to be an extravaganza, with new Zealandwellgearedupandtunedtotrekkers’andtravellers’needsandwants.detailswillberevealedat an introductory information night at arthritis sa at 6pM on Thursday 22 January, 2015. remember to write the date in your diary.

relativelyclosetohome,thetrek’sstartingpointacross the Tasman sea will make it an affordable option for participants, who are being asked to foot theirownairflightandtrekkingexpensesandraise$3,000 to go directly towards arthritis research. The proximity of new Zealand will also reduce the time necessary to be away from home, unless the option to stay on and enjoy other part of new Zealand appeals.

To register your interest in participating in the 2016 StepUpForArthritistrek,contactArthritisSA’sMarketing & Communication Manager, Celia painter on 8379 5711 or email Celia.painter@arthritissa.org.au

The team ended their time in India with a visit to the majestic Taj Mahal

Board member Tracey Powell doing it for Arthritis SA

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On The Move | Summer 2014

Kids COrner

Christmas colouring in competition

✄

nAme: _______________________________________________ ContACt nUmBer: ______________________

Address: ______________________________________________________________________________________

a thunderstorm and torrential rain could not dampen the joyoussearchforthestate’sfamousportriverdolphinsrecently.

Families with children living with juvenile idiopathic arthritis joined arthritis south australia staff members in pilingontothehighprofiledolphinexplorer,operatedby port river dolphin Cruises, for the memorable search, which is the highlight of each cruise.

little faces laughed, big kids joked and new friendships were forged between parents, bound together by a condition they wished did not exist. This was the Christmas get-together of those who form arthritis SA’sJIAnetwork.ArthritisSAhadaskedthefamiliesearlier this year what they would like most to do and where they would most like to go for their Christmas celebration and the dolphin cruise was most favoured.

arthritis sa health services Manager, Karen smith, said thedifficultiesoflivingwithJIAdisappearedontheday

as youngsters became absorbed in dolphin spotting.

“it was wonderful – very special,” said Karen. “The empathy which unfortunately comes from sharing such a problem created a very supportive environment and everyone seemed to relax and enjoy themselves. it was a real treat for the staff members of arthritis sa too because many were meeting families affected by Jia for thefirsttime.”

arthritis sa holds three events a year for families with Jia. Further details can be found on our website www.arthritissa.org.au

dolphins bring friends together forever

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2. using, paint, crayons or pencils, let your childworktheirmagic!

3. all entries must include your name, contact phone number and address on the bottom of the page.

4. post colouring page to arthritis sa 118 richmond road, Marleston sa 5033 by Wednesday, 17 december 2014.

5. The winner will contacted on Friday, 19 december 2014 and published on our facebook page www.facebook.com/arthritissa

2015 take Charge of life CoursesAll courses cost: $30 - Arthritis sA members FRee

2015 take Charge of Pain Courses2 x 2.5 hour interactive workshops that will provide you with the strategies to deal with pain. learn more about the causes and treatments for pain; medications, complementary therapies, and what to do when medication doesn’twork.

date time Place

part 1: Tue 3rd Feb 9.30am-12pm Burnside City part 2: Tue 10th Feb 9.30am-12pm uniting Church, 384 portrush rd, Tusmore

part 1: Wed 4th Feb 9.30am-12pm Blackwood part 2: Wed 11th Feb 9.30am-12pm Community Centre, hall a

part 1: Mon 9th Feb 1.30pm-4pm arthritis sa, 118 part 2: Mon 16th Feb richmond road, Marleston

part1:Mon16Mar 9.30am-12pm WakefieldHouse, part 2: Mon 23 Mar 65 acre ave, Morphett vale

part 1: Tue 14th april 10am-12.30pm arthritis sa, 118 part 2: Tue 21st april richmond road, Marleston

2015 take Charge of Arthritis Coursesa one day 5 hour interactive workshops that will cover osteoarthritisOrinflammatoryarthritis(whichincludesrheumatoid arthritis) Or scleroderma.

learn about causes and treatments for your arthritis, including medications, current research, joint surgery and lifestyle issues.

date time Place

Tue 24th Feb 10am - 4pm arthritis sa, 118 Osteoarthritis richmond road, Marleston

Wed 4th March 10am - 4pm arthritis sa, 118 scleroderma richmond road, Marleston

Wed 29th april 10am - 4pm arthritis sa, 118 Inflammatory richmondroad, Marleston

2015 Consumer information seminarsinformation seminars Cost $10 ($5 concession, free to members of Arthritis sA)

venue: Arthritis sA, 118 richmond rd, marleston

february Wednesday 25 feb 7pm-8.30pm arthritis sa, 118 richmond road, Marleston Arthritis and foot care do you have painful feet? learn how to care for your feet when you have arthritis and improve your mobility

Presenter: Maria Latemore - Podiatry services sA

march Wednesday 18 march 7pm-8.30pm arthritis sa, 118 richmond road, Marleston

rheumatoid arthritislearn about rheumatoid arthritis and how to manage your symptoms and pain and improve your quality of life

Presenter: Dr Malcolm smith FRACP

may sunday 3 may2pm -3.30pm

fibromyalgia-treatment & management learn how to manage this debilitating condition and understand your treatment options from an expert rheumatologist Presenter: Dr Richard Kwiatek FRACP

For bookings please contact arthritis sa on 8379 5711 or www.arthritissa.org.au

support groupsfor all support group 2015 meeting dates and times, please refer to our website www.arthritissa.org.au or call (08) 8379 5711

2015 evenTs & happenings

The Copper Triangle Arthritis Support Group presented an amazing $2,000 for arthritis research to CEO Julie Black.

CEO Julie Black (left) presents Wendy Rowe with her 10 year service award at Kadina.

thank you Copper triangle support group

14

Donate:

✆ (08) 8379 5711 1800 011 041 country freecall

  www.arthritissa.org.au

   118 Richmond Road, Marleston SA 5033

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Thank you for your kind support

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Address: ________________________________________________

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Expiry date ___ /___ Signature __________________________ *CCV ___ /___ /___ Donation Amount $_________________*The CCV is mandatory; this is the last three digits on the back of your card

Dear Member,

Christmas is a happy time for most people with a big focus placed on family and especially children. As a mother of two wonderful girls and grandmother to Max, it breaks my heart

when I think of children with arthritis. Imagine your own grandchild or child with this disease.

It affects everyone differently. For Lucy, pictured, there was chronic fatigue and aching – for the first five years of her life! It was then that Juvenile Idiopathic

Arthritis (JIA) was diagnosed.

Arthritis in children can be much, much worse than for an adult and early diagnosis is essential to prevent lifelong problems.

At Arthritis South Australia, we are inspired by the many children who just “deal with it” and accept their painful disease. We are doing everything

we can to help them fight this disease. Every year over 1,000 children in Australia are diagnosed with JIA and we want to be there to

assist them.

Arthritis SA is committed to supporting not only children with JIA, but the whole family. We need your support today to make a real difference to our little ones because “Kids Get Arthritis Too”. Our Christmas wish is to find a cure and put an end to the pain of arthritis for all children who suffer from musculo skeletal diseases like JIA. Please join me in making a donation today.

I wish you and your family a safe and happy Christmas.

Julie Black

Chief Executive OfficerArthritis SA