Scleroderma NSW

The Scleroderma Association Of NSW inc. was established in 1979. The Association's aim is to provide support and information to people with scleroderma, their carers, and interested professionals by offering:

• seminars
• workshops
• newsletters
• literature
• telephone information
• counseling
• videos

Her Excellency Professor Marie Bashir AC CVO
Our Patron

All of the Association's work is carried out on a voluntary basis by members.

We are a registered charity that was formed in 1979 by a few dedicated scleroderma sufferers, one of whom received the Order of Australia Medal for her volunteer work and untiring dedication, before retiring. We are strongly committed to research and conduct many fundraising events to assist Australian research.

We maintain an office at 15/6-8 Holden Street, Ashfield (Sydney) run by three unpaid volunteers recruited from our membership. The office is open 10.00 a.m. to. 2.30 p.m. Mondays and Thursdays and an answering machine collects messages after hours. The membership is $25.00 per year and entitles members to our extensive information and four newsletters per year. Our office staff answers all manner of phone queries and counsel callers. We call regular office meetings to advise volunteers how to handle these queries and involve them in the running of the office. Letters are answered, information is sent out, newsletters sorted and posted to our members. A Management Committee of nine volunteer members with scleroderma is appointed at our AGM. We also have a medical panel who give generously and freely of their time. We meet with them once a year to report progress and obtain advice. They also act as speakers at seminars, which we sponsor, the last of which was attended by over 100 people from all over New South Wales and other Australian states.

We receive a small grant to help publish our Newsletters from Sydney Local Health District. Whenever possible we hold market stalls, selling beautiful hand crafted items and baby wear which has been made and donated by so many gifted people. All money raised is channeled into much needed research into the disease. An added benefit of setting up stalls with Scleroderma banners and posters we facilitate essential awareness raising.

Support Group meetings are held monthly (except for December and January) at the City of Sydney RSL Club, 565 George Street Sydney hosted by the Committee and is open to all people with scleroderma and their carers. It is held on the 4th Saturday of the month and starts at 1.30pm. Relatives and friends are also welcome. The impact on the local community can be measured by the constant attendance when sufferers tell us we had literally saved their lives. We also hold Scleroderma Awareness Week in March when volunteers and members hand out our pamphlets in shopping centres, malls and other public venues, where possible, see opportunities for guest spots on radio and television and frequently feature articles published in newspapers and magazines. We promote and acknowledge World Scleroderma Day on 29 June each year and have an awareness table at leading hospitals. We encourage and foster fundraising and awareness morning teas around different communities by many or our members which has been most successful in the outer state regions of Sydney.

Scleroderma is an acquired, rare, non-contagious disease that occurs world wide in sporadic cases, with a great variety of clinical presentations.

Scleroderma is a disorder of the connective tissue of the body. The word scleroderma comes from two Greek words: "sclero" meaning hard, and "derma" meaning skin. It was originally thought to be a skin disorder, because of the hardening of the skin, which mainly affects the hands and feet. However, it is now realised that the blood vessels and some internal organs can also be involved.  Scleroderma is an uncommon disorder and affects:

• The skin, usually the hands and feet, may become thickened, tight, tough and shiny due to swelling and thickening of the connective tissue.
• The connective tissue (collagen) is not abnormal, but in scleroderma there is too much of it, making normal movement difficult.
• The thickening is found in most people with scleroderma, and may sometimes spread to other areas, such as the arms, face, trunk and legs.
• The blood vessels may be narrower than normal, and react to changes in temperature by going into spasm when the fingers or toes are exposed to the cold.
• There are different forms of scleroderma - localised and systemic.

It is a disease that affects skin particularly, but also internal organs. It may be difficult to understand because it is not one disease. It may be a family of ten or twenty different diseases. There are three major categories of scleroderma; localised, limited/CREST and diffuse.

Limited and diffuse are both forms of systemic scleroderma - a fact that is often misunderstood.