THE SCLERODERMA ASSOCIATION OF QUEENSLAND INC.
Supporting those suffering from:
Scleroderma, Sjogrens Syndrome and Raynaud’s Phenomenon
In 1983 a group of people all with the disease Scleroderma was brought together by Joyce Giffin, herself a sufferer. Included in that group were Yvonne See, who wrote up the minutes and Irene Iker, who looked after the sale of badges. These three members formed part of a small committee. Joyce Giffin could see the need for such a group and they supported and helped each other. It was comforting to know ‘you weren’t the only one’ who had this unusual and what is considered, a rare disease. From these humble beginnings the numbers grew and in 1986 the membership was 46. This was the beginning of what is now known as the Scleroderma Association of Queensland Inc. which has a membership of some 270 people throughout Queensland. Nowadays, there is a very strong support group on the Gold Coast and contacts have been established on the Sunshine Coast, Bundaberg, Mackay, Townsville and Cairns. The Scleroderma Association is working this year to expand its activities in the regional areas and assist the Support members there.
Scleroderma, or Systemic Sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word ‘Scleroderma’ comes from the two Greek words: ‘sclero’ meaning hard, and ‘derma’ meaning skin. (Extract from our book Understanding and Managing Scleroderma, produced by Scleroderma Australia). As well as the skin being affected, the internal organs and joints can be involved. It is a complex disease sometimes difficult to diagnose, and symptoms range from very mild to serious depending on the indications presented.
As well as providing support, the aim of the Scleroderma Associations is to educate patients and their families about Scleroderma.
The Brisbane branch has a bi-monthly magazine which, contains the latest in medical and research news, tips from members on how to manage specific problems associated with Scleroderma, and much more. The magazine is sent to all members in Queensland and for some people living in remote areas, is their only means of support.
For a number of years Brisbane branch has held an annual seminar. Rheumatologists, gastroenterologists, dermatologists and a pharmacist have been amongst the guest speakers. In the past, skincare pharmaceutical companies have kindly donated samples of their products, as one of the manifestations of the disease is dry skin. The seminar takes place over a day with plenty of time for meeting with other members at morning tea, lunch and afternoon tea. The feedback from these seminars is always positive with members returning for each subsequent one.
Our next seminar will be held on May 18th, 2013 at Chermside Bowls Club.
In the last few years, Scleroderma Australia was launched, with other states and territories joining forces to make us a truly national organisation This was indeed an exciting event and enables us to work together promoting awareness of Scleroderma at both a state and national level. Scleroderma Australia is in the process of appointing a medical panel comprising specialists from around Australia to vet proposals for research specifically into Scleroderma.
We have come a long way since 1983 and certainly owe a lot to Joyce Giffin. If it was not for her foresight, courage and dedication to help people with Scleroderma all those years ago, the Scleroderma Association may not have become what it is today.
The Queensland Association meets each month at 10.00am at Carindale Library. It’s a good opportunity to have a cuppa and to share experiences with fellow sufferers who understand how you feel. Everyone is welcome including family and friends. See Support Group Dates for details.
These words of wisdom were said by one of our past presidents – ‘The more knowledge you have, the better able you are to look after yourself.’
The Scleroderma Queensland office is open: Wednesday 9.00 am to 12.00 noon (Closed on Public Holidays).
Address: PO Box 316, SALISBURY Qld. 4107. The new physical address of our office is 124A Evans Road, Salisbury
Telephone: (07) 3277 3460.
Address: PO Box 558, Balgowlah
Telephone: (02) 9990 5159