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Scleroderma Association of NSW


The major objectives of the Association are:
  • To provide mutual support and help among members;
  • To learn more about the disease;
  • To bring informed knowledge of Scleroderma and the needs and problems of Scleroderma patients to the notice of the general public and medical profession; and
  • To encourage research and to raise funds for this purpose.

It was felt that by meeting other patients and their families and discussing ways to cope with problems, alleviated the desolation one is burdened with when suffering from a rare illness like Scleroderma.

As the majority of the members are not well enough to participate in fund-raising activities the Association finds that it has to rely on the generous assistance of families and interested friends. The Association would therefore be grateful for any support it can receive from the general public.
Donations of $2 or more to the Scleroderma Association of NSW are tax deductible.

Members meet monthly and Scleroderma patients, their families and friends are most welcome.

WHAT IS SCLERODERMA?

-  It means 'Thickened Skin'.
-  It is a rare disease affecting the connective tissues.

SYMPTOMS

Patients undergo a general change in health and well-being, eg joint stiffness and aches, muscle weakness, loss of weight, tiredness even in the morning, shortness of breath, reflux, problems with blood circulation in fingers and toes associated with numbness and sensitivity to cold temperatures, high blood pressure with kidney disease.

CAUSES

Almost nothing is known but some chemicals and drugs are implicated.

COURSE

Varies from stable disease, slowly progressive to rarely rapidly fatal.

WHO IS AFFECTED?

Scleroderma is rare in children. It is more common in women 20-40 years of age than in men. Community incidence is unknown but is likely to be 10 undiagnosed cases for every diagnosed patient.

HOW IS IT TREATED?

Treatment is far from adequate. Some drugs can produce improvement, depending on the form of the disease and its advancement, but no cures are obtained. THERE IS A GREAT NEED FOR RESEARCH.

Address ., PO Box 227
Ashfield NSW 1800
Tel 02 9798 7351
Website www.sclerodermansw.org