on theedition 2 - 2013

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Living with scLeroderma

twins share their story

www.arthritissa.org.au

Vision StatementTo improve the quality of life of people with arthritis and related conditions.

Mission StatementTo 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• toprovidefundsforresearchprogramsinordertofinda

cure and better treatments.

• togivepracticaladviceandsupporttopeoplewitharthritis and other musculoskeletal conditions and their carers.

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

contents

Arthritis Foundation of South Australia inc.incorporating osteoporosis SA118 Richmond Road, Marleston SA 5033

telephone: (08) 8379 5711Country Free Call: 1800 011 041 Fax: (08) 8379 5707email: info@arthritissa.org.au

Website: www.arthritissa.org.auABn: 53 784 654 861

editor Julie Black telephone: (08) 8379 5711 email: julie.black@arthritissa.org.auAdvertising enquiries telephone: (08) 8379 5711 email: mike.walters@arthritissa.org.audesign Celdesigns telephone: 0412 824 463 email: celdesigns@bigpond.com

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.

Arthritis 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 using the enclosed donation envelope or by telephone on (08) 8379 5711 or Country Freecall 1800 011 041. Alternatively, secure online donations can be made at www.arthritissa.org.au

Events & Happenings Inside front cover

CEO’s Report 2

President’s Report 3

Feature story - Scleroderma: An emotional and physical journey 4-6

What is Scleroderma? 7

Ask Arthritis SA 8

Arthritis SA wants to hear from you? 8

Kidsflix-Ournews 9

Results from the Fibromyalgia Support Group Survey 10

The Bucket List 10

2013 Great Escape Lottery results 11

Arthritis Aware Pharmacy program launch 12

Appeal - Elizabeth’s story Back covervaLued donations

Please note Arthritis SA reserves the right to cancel or postpone events if necessary

events and happenings‘take Charge of Arthritis’

06/07/2013 - 13/07/2013 9.30am to 12.00pm

25/09/2013- 02/10/2013 1.00pm to 3.30pm

09/11/2013 - 16/11/2013 9.30am to 12.00pm

‘take Charge of Pain’

23/07/2013 - 30/07/2013 1.00pm to 3.30pm

10/08/2013 - 17/08/2013 9.30am to 12.00pm

11/09/2013 - 18/09/2013 1.00pm to 3.30pm

19/10/2013 - 26/10/2013 9.30pm to 12.00pm

11/11/2013 - 18/11/2013 1.00pm to 3.30pm

07/12/2013 - 14/12/2013 9.30am to 12.00pm

Aldinga

05/07/2013 - 12/07/2013

Modbury

19/08/2013 - 26/08/2013

noarlunga

21/08/2013 - 28/08/2013

elizabeth

20/09/2013 - 27/09/2013

Monthly Consumer Seminars

July

Monday July 8th 7.00pm to 9.00pm

Topic: Pain Management for Arthritis

Guest Speaker: Dr Simon Burnet FRACP (Rheumatologist)

August

Monday August 5th 1.30pm to 3.30pm

Topic: Arthritis and Complementary Therapies

Guest Speaker: Faith Best (Nutrition Consultant, Naturopath)

September

Tuesday September 3rd 1.30pm to 3.30pm

Topic: Arthritis – New drugs and treatments

Guest Speaker: Dr Michael Wiese B.Pharm.,PhD (Pharmacist and Senior Lecturer in Pharmacotherapeutics)

october

Monday October 21st 7.00pm to 9.00pm

Topic: Understand osteoporosis

Guest Speaker: Dr Nicholas Kasmeridis (Endocrinologist and Diabetes Specialist)

november

Wednesday November 27th 1.30pm to 3.30pm

Topic: Dealing with the healthcare system

Guest Speaker: Jane Goode (Health Services Manager, Arthritis SA)

Support Groups

LSS – Lupus, Sjögrens, Scleroderma

Tuesday August 6th 7.30pm

September 19th 10.30am

Tuesday 22nd October 7.00 pm

Thursday 5th December 10.30 am

Marion Branch Support Group 1.00pm

• FridayJune28th

• FridayJuly26th

• FridayAugust23rd

• FridaySeptember27th

• FridayOctober25th

• FridayNovember22nd

Southern Arthritis Friendship and Support Group 1.00pm

• WednesdayJune26th

• WednesdayJuly31st

• WednesdayAugust28th

• WednesdaySeptember25th

• WednesdayOctober30th

• WednesdayNovember27th

Western osteoporosis Support Group 10.00am to 12.00pm

• MondayJuly23rd

• MondaySeptember24th

• MondayNovember26th12.00pmto2.00pm

Copper triangle

Meet bi-monthly on the second Thursday of the month

ceo’s report Julie Black president’s reporthow your money is spent

where your money is spent

colette smith

With one in four South Australians suffering from musculoskeletal conditions,

Arthritis SA is determined to support even more people. Over the last 12 months, new foundations have been laid to deliver programs in new and exciting ways.

Research had shown that in today’s world, many people are time poor and making a commitment to a six-week, self-management program isbecomingdifficult.Thereisalsoa need to embrace technology to keep up with the growing demands of people to access information over the internet.

As a consequence I am delighted to report that we now offer three versions of self-management programsspecificallydevelopedforpeople with arthritis. The evaluation of these has been extremely positive and it is exciting to see most courses booked out. The Take Charge of Life programs provide participants with support as well as information on

self -management strategies such as pacing, understanding medicines, communicating with health professionals and goal setting. Each participant has a six-week follow-up call to provide ongoing support. Please visit our website www.arthritissa.org.au to book in today.

InMarchweheldourfirstwebinarwhere Medical Director Dr. Simon Burnet presented a one hour talk on gout to general practitioners and other allied health professionals. A major commitment to supporting country people will see the concept of webinars expanded further in the coming year.

A major focus this year has also been providing ongoing support for our families with children with juvenile idiopathic arthritis (JIA). I was privileged to attend our picnic in April where almost 80 parents and children attended and had a great day. We will follow this up with a special get together in July and I am delighted to report that Westpac bank will generously support our JIA children and their families on October 12th (World Arthritis Day) with a special event at the zoo. These activities are invaluable, as it provides opportunities for not only children but also parents to talk to our educators, meet each other and

establish support networks. Please contactourofficeon0883795311ifyou have a child with JIA and would like to attend.

Our monthly consumer programs that are free to our members have also proven to be extremely successful with over 50 people attending our Fatigue and Chronic Illness talk where Dr. Sam Whittle, a Rheumatologist, delivered an excellent talk to the very appreciative attendees. These programs will continue again next year due to their success. Please see our diary dates in this edition and book in to one of our excellent events today.

I am pleased to report that the BoardofArthritisSAhasrefinedand improved our strategic plan

to take us into an even stronger position over the next three years. With each year that passes, we aspire to reach, educate and support more people in our community who suffer with arthritis and other related conditions. With less than 1% of our income coming from the government, clear and strong strategies are now

in place to ensure the success of our future.

One of our key strategic pillars is our ongoing support of research, both locally and nationally. To this extentwewillincreaseourfinancialcommitment to research to over $200,000 a year over the next three years.

It is exciting to report the appointment of Dr. Elizabeth Hoon, ourfirstArthritisResearchFellowatthe Adelaide University. This initiative significantlyincreasesourlevelof research support locally and is additional to national programs we have, and will continue to support. In particular, Elizabeth will support our education programs to ensure that we have clear evaluation strategies for our programs and local research is supported at a community level.

Over the last twelve months we have been actively working with pharmacy groups on our Arthritis Aware program, which I was honoured to launch recently. This program will provide a vehicle for arthritis information to be delivered byspecificallytrainedpharmacystaff at a local community level. This program was evaluated by Adelaide University and demonstrated that participantsshowedsomesignificantimprovement in their quality of life by undertaking a three-visit, self-directed, learning program facilitated in the pharmacy. We were also delighted to present this important project and its results at the Australian Rheumatology Association Conference in Perth in May.

With close attention to expenditure, Arthritis SA maintains its administration costs well below industry average and uses its donations wisely and effectively. I amconfidentthatArthritisSAisonthe path to a strong and sustainable future and with your support I know we will continue to make a difference to the large number of people we are able to support with arthritis not only today but into our future. I, therefore, have no hesitation in asking you to join me and making a donation today to support our important work.

• Commitmentofover$200,000 a year to research

• Supportingevenmorepeople with arthritis

• Providingevidencebasedprograms

• ExpansionoftheArthritisAware program

• Onlinetraining

• Providingsupportandresources for people with arthritis

• Subsidisingarthritisexercise programs

transforming our services to support more peopLe with arthritis

Marjory Hammond is an extremely dedicated and committed mother to Sarah, who has suffered JIA since she was just 18 months old. Sarah is our Young Ambassador who is always willing to support and provide information to other children who have JIA. Even with such busy lives the Hammond family under the guidance of Marjory, with her strong band of volunteers all work

extremely hard every Mother’s Day topick,packandsellflowersontheside of the roads in Echunga. Arthritis SA would like to sincerely thank the Hammond family who have raised over $14,000 over the years, to support other children with arthritis. Thank you so much!

over $14,000 of commitmentget arthritis too!

Front: From Left to Right:Colette Smith - Arthritis SA President, Michael Schmidt - Chemplus Buying and Marketing Manager, Anne Young - Chemplus director, Robyn Johns - national Pharmacies pilot program Pharmacist Rear: neale Burton - national Pharmacies General Manager, Professional Service

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Julie and Pauline’s story is unique in that they are twins who were both diagnosed in their 50’s with the autoimmune disease,

scleroderma.

Their amazing journey towards diagnosis, although vastly different from each other, not only highlights the emotional impact of their disease on them individually, but their united determination in

increasing public awareness of such a debilitating disease, if left untreated.

JulieandPaulinewerefromalargefamilyoffivechildren born in Quorn. They grew up happily in a country town until their father passed away suddenlywhenthegirlswereonlyfiveyearsold.Thisthenlefttheirmothertoraisefivechildrenunder eight alone. The family moved to Seacombe

scLeroderma: an emotionaL and physicaL Journey shared By twins JuLie and pauLineGardens where they had wonderful support from extended family and grew up in the suburbs of Adelaide as typical fun loving, healthy children.

Both Julie and Pauline went on to have successful and rewarding careers. Pauline’s career as a Physical Education teacher took her to Singapore for 20 years. Julie’s focus led her towards nursing and to Harvey Bay, Queensland.

In wasn’t until 2006 and after several years of painful hands and feelings of tiredness and emotional exhaustion from constantly being told that her pain was associated with a previous carpel tunnel operation in 2002, that Julie was eventually diagnosed with scleroderma.

“Finally, I had an answer to my problems” said Julie.“IwasalmostexcitedthatIfinallyknewwhatwas causing me such pain and emotional distress for the past few years.”

Once diagnosed, Julie was referred to the Prince Charles Hospital in Brisbane to the Scleroderma Clinic which then provided Julie with incredible support and resources to assist her in managing her condition.

“I can’t stress enough how important it is to have a good specialist and support network” says Julie. “Up until I was diagnosed, I felt very isolated in my pain, the impacts have been huge and not just emotionally but also physically. There are limitations to what I can now do.”

Having been a nurse for over 40 years, Julie can no longer work in the profession she loved. Both Julie and Pauline’s skin is incredibly hard andthickening,particularlyonthefingers.Theydescribe their body to touch and the sensation they feel is like touching or wearing a cold wetsuit.

Winterisincrediblydifficultforthembothasscleroderma typically leads to stiffness and difficultiesmovingthejointsbecausethecoldexacerbates this. Both sisters talk about winter as being a time of hibernation.

Pauline’s diagnosis in 2011 was in part due to her youngest daughter, a doctor, noticing swelling in her hands. She recalls her husband buying her new ringsasherfingersweresoswollen,shecouldnolonger wear them.

Julie had suspected that perhaps Pauline’s

symptoms were more than what they seemed and had repeatedly asked her sister to be tested for scleroderma. Pauline also developed a severe cough and not realising that other organs can be affected by scleroderma such as lungs, was initially treated for asthma.

“I feel so lucky in a sense that Julie was diagnosed before me, as she could see I was heading down the same path as her, yet I was in denial. Surely I couldn’t have the same disease as my twin, not to mention a disease that hardly anyone knew anything about” said Pauline. “I only had the blood tests to keep Julie quiet. I’m so thankful now that I did and that Julie persisted.” “Having an early diagnosis has meant that although I have similar symptoms, the severity is less than Julie’s.” says Pauline.

Both Julie and Pauline wonder how many people go undiagnosed and treatment delayed and then faced with deteriorating health with no answer to their problems.

Once Pauline was diagnosed with the extractable nuclear antigen (ENA) with the presence of scleroderma antibody and anti-nuclear antibodies (ANA) detected, Julie decided to move back to Adelaide to support Pauline and be nearer to her extended family.

While both twins have the same disease, the impact on them is very different. Julie’s hands feel like they have just come out the freezer to touch. Shealsohashadulcersonherfingersandthereisnoticeable tightening of her skin around her mouth, making trips to the dentist a real challenge. Julie also has regular stretching of her oesophagus under a general anaesthetic and takes a large number of medicines which are very expensive.

In contrast, Pauline was diagnosed very early in her condition and the medicine she takes has slowed down the progress of her disease. Pauline still has the tiredness and hard skin, but with the treatment and support she receives leads a very activeandfulfillinglife.

It is the closeness and the bond that the twins share that keep them looking forward when they feel overwhelmed with their disease.

“In a way, it makes it easier to share your thoughts and feelings with someone and I guess we are, in

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The word ‘scleroderma’ means ‘hard skin’. Scleroderma affects the connective tissues of the body (tissues that hold together joints, muscles, blood vessels and internal organs). The connective tissues of people with scleroderma contain too much collagen, a type of protein. Collagen is important to give connective tissue its strength, but excess collagen causes hardening and tightening of the affected area.

Many different areas of the body can be affected. There are two major types of scleroderma:

Localised scleroderma (sometimes called ‘morphea’)This form of scleroderma affects only the skin and sometimes the tissues beneath it (for example, muscle). This can lead to stiffness and difficultiesmovingthejointsintheaffected areas.

Systemic sclerosisThis form affects the connective tissues throughout the body, including blood vessels, joints, the digestive system (oesophagus, stomach and bowel), and occasionally the lungs, heart, kidneys and muscles.

Scleroderma is an autoimmune condition. The normal role of your body’simmunesystemistofightoffinfections and diseases to keep you healthy. In an autoimmune disease like scleroderma, your immune system starts attacking your own healthy tissues. This stimulates the production of excess collagen.

What are they symptoms?Symptoms vary greatly from person to person and also depend on what part of the body is involved. Symptoms may include any of the following:

Thickening and hardening of the skin,particularlyonthefingers,armsand face.

Raynaud’sphenomenon:Thefingersor toes turn white, then blue in the cold,andthenredasbloodflowreturns. This is caused by narrowing of the blood vessels, in response to cold weather. It is possible to have Raynaud’s without having scleroderma, but most people with scleroderma will have symptoms

of Raynaud’s at some time and it is oftenoneofthefirstsymptomstoappear.

•Smallwhitechalkylumps(calciumdeposits) under the skin

• Stiffnessandpaininthemusclesand / or joints

•Indigestionorheartburn

•Diarrhoeaorconstipation

•Shortnessofbreathorreducedability to exercise

What causes it?The exact cause of scleroderma is unknown. Genetics, the immune system and environmental factors may play roles in causing this condition. It has yet to be proven in research.

How is it diagnosed?Thereisnospecifictestforscleroderma. Your doctor will diagnose scleroderma from your symptoms, a physical examination and various tests, such as blood tests or a skin biopsy (a small piece of skin is removed and examined under a microscope). It may take several visits before your doctor can tell if you have scleroderma as the symptoms can overlap with other diseases and types of arthritis.

What will happen to me?Many people with scleroderma have few or minimal symptoms and are able to lead a normal, or nearly normal life with simple treatment or lifestyle changes. However, the course of scleroderma is variable and no two cases are the same. People with more severe forms of scleroderma can have serious problems with organs such as kidneys, lungs and heart. If these organs are affected, you may need to see a specialist (for example, a kidney specialist if your kidneys are affected).

is there a cure for scleroderma?Currently there is no cure for scleroderma. While there are ways you can control your symptoms, you should be wary of any products or treatments that claim to cure scleroderma.

What treatments are there for scleroderma?

Many of the symptoms of scleroderma can be improved with medicines and / or lifestyle changes. Your doctor will tailor your treatment to your symptoms and how severe your condition is. There is no way of predicting exactly which treatment will work best for you. Your doctor may need to trial several different treatments and medicines before findingtheonethatisrightforyou.

What can i do?1. Learn about scleroderma and play

an active role in your treatment. Not all information you read or hear about is trustworthy, so always talk to your doctor or healthcare team about treatments you are thinking about trying. Self-management courses aim to help you develop skills to be actively involved in your healthcare. Ask Arthritis SA for further details and how we can assist you.

2. Talk to your doctor about medicines. Some medicines may help with problems with joints and muscles, blood vessels, kidneys, lungs or the digestive system. Always talk to your doctor or pharmacist before you start taking any medicines, as even natural and over-the-counter medicines can have side effects.

3. Manage Raynaud’s phenomenon. Minimise exposure to cold and sudden temperature changes. Make sure your whole body is kept warm and protect your hands and feet with gloves and warm socks. Avoid cigarette smoke.

4. Look after your skin. Keep skin clean, well-lubricated and warm to help prevent dryness and infections.

5. Live a healthy lifestyle. Regular physical activity will help keep yourskinandjointsflexibleandboost circulation. A healthy diet, including frequent small meals rather than the usual large meals, may help reduce problems with the digestive system. Stop smoking and reduce stress to help your overall health and wellbeing.

Contact Arthritis SA on 08 8379 5711 for more information on arthritis and other musculo-skeletal conditions.

what is scLeroderma?a sense, incredibly lucky to have each other” says Pauline. “It’s also why support networks are vital in helping those who are living with scleroderma and other auto-immune diseases to access support as well as current and reliable information.” “We’ve also formed some wonderful friendships through the Scleroderma Support Group at Arthritis SA” said Julie.

The LSS Group meets regularly at Arthritis SA. See our events and happenings page or visit www.arthritissa.org.au.

If you or someone you know suspects they have scleroderma or you would like to access more information, please contact Arthritis SA on 08 8379 5711.

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As part of our commitment to improving our services and support to our members, we have included a member survey in this edition of on the Move.in line with our new strategic plan, we aim to ensure that we are providing the support and services that our members are looking for.i, therefore, ask that you take a few minutes to complete the enclosed member’s survey and return it in the reply paid envelope to ensure

we are providing you with the services you want and need where possible.if you would like to make a donation to support our important work then both items can be returned in the same envelope.We look forward to hearing from you.

arthritis sa wants to hear from you?

Why do i feel so tired all the time? What can i do to avoid this fatigue?

Fatigue is a common and constant companion for many people who have arthritis, especially for thosewhohaveautoimmuneconditions.Thefirststep in managing fatigue is to speak to your doctor about possible causes, such as lack of iron or other vitamins and minerals, medication side effects, uncontrolled pain levels, and hormone imbalances. Assess your sleep habits and focus on improving the quantity and quality of your sleep; avoid long naps during the day. Regular exercise, sunlight, a healthy diet and learning to pace yourself can all reduce fatigue – the Arthritis SA Take Charge of Pain course can help you learn to manage these lifestyle factors.

Which of the rubs and ointments that are sold at the pharmacy might help my arthritis?

There are many rubs, ointments and gels sold at pharmacies and health food shops which claim to provide some relief from arthritis pain. However,

mosthavenoscientificevidencetosupporttheirclaims. Sometimes the pain relief experienced from an ointment may simply be due to the heat the ointment produces and the action of massaging itintothejoint.Non-steroidalanti-inflammatorycreams, and capsaicin gel both have active ingredients that have been shown to relieve pain – speak to your doctor before using either of these products. For a full list of which complementary therapiesaresupportedbyscientificevidence,readour complementary therapies fact sheet - http://www.arthritisaustralia.com.au/images/stories/documents/info_sheets/2012/Complementary_therapies.pdf

Questions for this column may be emailed to info@arthritissa.org.au or posted to Arthritis SA, 118 Richmond Rd, Marleston 5033. Selected questions may be included in future issues of On The Move.

For advice or information contact our Arthritis Helpline Ph: 1800 011 041 or 08 8379 5711.

ask arthritis sa – your questions answered

• two movies for free*

• 9moviesforonly$9eachforyouanda friend or family member

• AbagofMenzFruChocstoshare (excluding free cards)

• Availableallsessions(unlessbooked out)

• ValidtoendofMarch2014

• ChancetowinaWallisGoldPass

• Over$150savingsonnormalticket prices

• Availablefromearly March until sold out

• Allthisforonly$19

Some restrictions apply:

• Onlyonefreemovieticketpercardper visit

• Notvalidforprogramsmarked‘nofree list’

the take 9 movie card offer:

The two hit movies for the season ‘The Croods’ and ‘Adventures in Zambezia’ have drawn happy crowds from the south to the north of Adelaide at KidsflixNoarlungaandKidsflixElizabeth. The Amazing Drumming Monkeys kept families singing and dancing at Noarlunga while Wobbles the Clown had children

laughing and cheering with his interactive show in Elizabeth.

The month of April heralded theveryfirstKidsflixeventheldin Launceston. It was a rainy day in Tasmania but that didn’t dampen the spirits of the 150 plus children and their families experiencingtheirveryfirstKidsflix.Withateamoffacepainters, air-brush tattooists, Mickey and Minnie Mouse and Star Wars costumers on hand, the children attending were treated to a fantastic morning of entertainment before going in to the cinema to watch ‘The Croods’.

Being able to reach out to children living with chronic illness, disabilities or from disadvantaged homes not only within the city but in rural and remote communities is integral tothesuccessofKidsflix,asisyour valued donation.

Show your support today and sponsor a child to attend a Kidsflixeventnearyoubysimply visiting arthritissa.org.au andclickon‘Kidsflix’orcall088379 5711 or country freecall 1800 011 041.

Coming Events:22/6/2013 – Werribee (VIC)

20/7/2013 – Fox (NSW)

3/8/2013 – Mitcham (SA)

11/8/2013 – Port Augusta (SA)

17/8/2013 – Ballina (NSW)

14/9/2013 – Brisbane (QLD)

KidsflixisanationalprogramofArthritisSA.Itisafreecharityeventforchildrenwithadisability,chronic illness or social disadvantage and their families. Beginning with an hour of children’s entertainmentandfollowedbyanewreleasemoviewithafreepopcornanddrink,theKidsflixcommunity is one of shared understanding and acceptance of others in similar situations.

our news

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Arthritis SA is fully supportive of all our support groups and is extremely grateful to the wonderful people who coordinate them. We believe that they make a real difference to so many people’s lives.

Earlier this year Arthritis SA wrote to all our members of the Fibromyalgia Support Group to work with them to plan the types of activities and when they might like them.

We were delighted with the very large response rate and we will use this information to work with the support group members in planning future activities.

It is also encouraging to see that a number of smaller local groups have formed independent support groups

in local areas as it was clear by the responses that travel is a major issue for many people with arthritis. We are collating this information and will be more than happy to pass this onto people who are looking for more local support.

As a result of the survey, we will be holding bi-monthly meetings with a guest speaker at Arthritis SA on a Sunday afternoon from 2-4pm. From the survey results, the most requested topics were new research intofibromyalgia,managingfatigue,pain management and medications.

This was reassuring as our May consumer presentation saw 54 people attend an excellent talk by Dr. Sam Whittle on chronic conditions

and fatigue. This was hosted by our LSS Support Group with many members of the Fibromyalgia Support Group attending.

Please mark Sunday, August 19th for a talk on medications and Sunday October 20th on research at Arthritis SA 118 Richmond Road Marleston.

arthritis sa resuLts from the fiBromyaLgia support group survey

2013 great escape Lottery resuLts

entertainment Books

Thank you to all the wonderful supporters who bought tickets in this year’s Great Escape Lottery. Congratulations to all the winners of the 2013 Great Escape Lottery:

1st Prize: G. Depp; 30930

2nd Prize: L. Peak; 23809

3rd Prize: M. Burgess; 25615

4th Prize: L. Plymin; 22928

5th Prize: L. Haylock; 21582

Don’t forget to purchase your 2013/14 Entertainment Book – cost is $65 with $13 going to Arthritis SA fundraising for research, education and support services.

Go to the Movies more often!

With the Take 9 Movie Card you will receive some amazing savings from Wallis Cinemas Sponsored by Channel 9 Telethon, Wallis Cinemas and Robern Menz.

Looking for information online? the following websites may assist you. the websites listed do not necessarily reflecttheviewsofArthritisSA.

developed by Arthritis Australia, the My Joint Pain website has a range of online tools to help you learn about your osteoarthritis or other joint pain.

https://myjointpain.org.au/

the Healthy Bones Website and online Bone Score Calculator will help you keep track of how well you are looking after your bone health.

http://www.healthybonesaustralia.org.au/

Sleepio is an online program which has been clinically proven to help people overcome poor sleep. the website also includes fact sheets and articles on insomnia and sleep hygiene.

http://www.sleepio.com/

What is a blog? it’s literally a web-log or online diary. the blogs linked below will give you a glimpse into someone’s personal journey with arthritis. (the views expressed are those of the authors not Arthritis SA).

http://www.mollysfund.org/blog/

http://therubybutterfly.wordpress.com/

http://www.livingwithscleroderma.com/

http://autoimmunegal.blogspot.com.au/

usefuL weBsites

voLunteers wanted can you spare some time to voLunteer?Volunteers are needed to help support our many programs. if you can help

please contact Sharon on (08) 8379 5711.

the Bucket ListThe Bucket List Quest is gaining fantastic momentum with completed buckets by local artists and celebrities being received each day. We are delighted with these remarkable works of art that have been created! Check out these gorgeous buckets on our Facebook page: https://www.facebook.com/pages/Arthritis-SA-Bucket-List-Quest/144130845755518. A sub-committee of ladies have enthusiastically embraced the BLQ concept and the ideas are

flowinginrapidly.Thecocktailparty launch will now be held on the 18th October, so that many more artists can become involved when their SALA commitments arefinished.

Online bidding for buckets will be opened in early October and will be available for everyone to have a chance to Kick a Cure for Arthritis by purchasing a wonderful piece of art and goodies.

For more details please contact Sue Lear, Business Development Manager via email at sue.lear@arthritissa.org.au

You can ensure that vital research continues in thefightagainstarthritisbymakingabequestto the Arthritis Foundation of South Australia.

Asignificantproportionofpublicdonationsreceived by the Arthritis Foundation of South Australia are in the form of bequests. Making a bequest may be as simple as adding a

codicil to your will, but seek the advice of your solicitor. To receive a bequest brochure or suggested wording for your bequest to Arthritis Foundation of South Australia, please call MargaretNowlan,DonorRelationsOfficeron (08) 8379 5711 or Country Freecall 1800 011 041

Bequests

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with

arthritis aware pharmacy program LaunchThe Arthritis Aware Pharmacy programhaditsofficiallaunchtothe South Australian pharmacy community on Wednesday the 4th of March.

Trained pharmacies will be provided with resources to ensure they are well equipped to provide quality, informed support to customers with conditions associated with arthritis.

In addition to the training and resources, The Take Action on Pain program provides these pharmacies with a health service that is designed to have clients returning to the pharmacy at predetermined intervals for condition review and maintenance check-ups.

The process requires clients to participate in an initial clinical review of both their medicines and support aids. It will address holistic contributing factors relating to pain and pain relief to optimise better health outcomes.

The program will be tailored to each individual client as part of the consultation process by the

pharmacist and pharmacy staff who will guide, monitor and support them every step of the way on their journey to better health.

This exciting program will be available for the community to access after all participating pharmacies have completed their training and received their resource kit, which should be in early July

2013. Participating pharmacies’ details will then be listed on the Arthritis SA website.

For more information on this project please contact Michael Walters at Arthritis SA via email at mike.walters@arthritissa.org.au or visit www.arthritissa.org.au

national Pharmacies Gawler Place. L Robyn

Johns, Pharmacist R Lyn Shand, arthritis sufferer

and Arthritis Aware participant

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address: 118 Richmond Road, Marleston SA 5033 phone: (08) 8379 5711 country freecall: 1800 011 041 email: info@arthritissa.org.au website: www.arthritissa.org.au Donate: online at www.arthritissa.org.auDeclaration of privacy The Arthritis Foundation acknowledges and respects the privacy of individuals. It is our policy to provide our supporters with information about our activities and from time to time to request further support. We respect your privacy and will not on sell your name to any other organisation. If you request no further mail from Arthritis South Australia or Osteoporosis South Australia, please write to us including your address details and donor number.

Yes, I want to support Arthritis SA The Arthritis Foundation of South Australia incorporating Osteoporosis SA

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Please choose your gift by ticking the appropriate box below. Remember, your donation of $2.00 or more is tax deductible.

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   Yes, I have arthritis

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Elizabeth is an active, healthy, professional woman who developed osteoarthritis of the knee in her fifties. At first the pain was manageable with physiotherapy and medication, but it gradually got worse to the point that she could not sleep at night. “My GP suggested a knee replacement and I was absolutely shocked when my orthopaedic surgeon showed me the x-ray of my knee and there was no cartilage left at all. I thought that only happened to people who were really old. While I accepted the inevitable surgery I rang Arthritis SA Helpline, for support and advice and to ask more questions “she says. “ I will be forever grateful for the information and advice provided by them and the skills I learnt from the take Charge of pain course.”

Arthritis SA is developing some ground breaking programs to help people just like Elizabeth and her family. We can help you too but we need your gift to ensure that support is provided through programs and education courses. Arthritis SA exists for the community, it is there to help and support the one in four South Australian who suffers from arthritis.

Elizabeth is managing her osteoarthritis and is now living a fulfilling life. Elizabeth knows that her donations to Arthritis SA are tax deductible and that Arthritis SA relies heavily on community goodwill and support.

“I’m enthusiastic about research, if everything that I have gone through can be avoided by identifying osteoarthritis early or if we can find who will get osteoarthritis or get it badly, and intervene early in the disease process,how fantastic that would that be!

“I’ll always be grateful to Arthritis SA for the support and advice that helped me gain perspective, and importantly taught me skills to manage my condition. I know with your support so many more people can be helped just like I was.”

We need your help. Your tax deductible gift ensures Arthritis SA can continue to expand the delivery of services to the community. I therefore ask that you consider making a donation today to assist us in our important work.

Julie Black CEO

Osteoarthritis can affect anyone!

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