SCLERODERMA
What is it? Scleroderma is a condition that predominantly affects the skin, but can also affect different parts of the body with symptoms varying enormously. Symptoms can generally be well managed with appropriate treatment. Who does it occur? The symptoms The exact cause of scleroderma is unknown. Current research suggests that problems in the connective tissues (tissues that hold together muscle, blood vessels, fat and skin), can result in the tissue becoming damaged and replaced by scar tissue. Who does it affect? Scleroderma affects more women than men. Often the onset occurs between the ages of 20 and 40 years but it can occur at any age. It does not appear to be inherited. Types Scleroderma may affect the skin alone (a condition called morphea) but when other organs are involved, it is generally divided into two types: 1. Limited scleroderma, when only the skin below the elbow and on the face are affected. 2. Diffuse scleroderma when skin all over the body is affected. 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 of the skin, particularly on the fingers, arms and sometimes face. • Colour changes in the hands and feet, usually from pale to blue to red, often after exposure to the cold (Raynaud’s disease). • Small calcium deposits in the form of nodules on the fingertips and bony prominences. • Stiffness in the muscles and joints • Indigestion or heartburn • Diarrhoea or constipation • Lung or kidney impairment. Diagnosis There is no single test for scleroderma. Diagnosis will usually involve a physical examination and medical history and may include further tests such as blood tests and sometimes a skin biopsy. Outlook For most people scleroderma is not systemic (ie, involving other parts of the body) or progressive. For many, scleroderma presents as a mild skin condition. However some people may have involvement throughout the body.
Management Management will depend on individual symptoms. It may include: • Medication to slow the progression of skin involvement or to decrease the severity of Raynaud’s disease. Special medication may be started if the lungs or kidneys are involved. Raynaud’s disease may be reduced by avoiding changes in temperature and by using gloves and other warming devices. • Exercise to preserve range of motion and improve overall health. • Skin protection • Stress management. Education
Resource Centre • • • Gottesman, Karen 2003, The first year: Scleroderma, Marlowe & Company, New York NY. Mayes, Maureen D 1999, The scleroderma book: A guide for patients and families, Oxford University Press, Melbourne. The Arthritis Foundations tips for good living with arthritis 2001, Arthritis Foundation of America, Atlanta, GA.
*All listed books and videos are available on loan from the Arthritis Victoria Resource Centre to members. If you would like to find out more about becoming a member call: (03) 8531 8000. Websites
A better understanding of scleroderma will greatly assist you in making decisions about the management of your condition. Arthritis Victoria’s education programs can assist you to develop the skills and knowledge needed to make these decisions. They also provide opportunities to meet others in similar situations. Arthritis Victoria can also put you in touch with local support groups, other relevant organizations and appropriate exercise groups for your condition. Courses Arthritis Victoria Self management courses and exercise classes. Call 03 8531 8000 for information on the course or class most suited to your needs. FURTHER INFORMATION Scleroderma Foundation Of Victoria The Foundation is a self help group for people with scleroderma. Based at St Vincent's Hospital Melbourne. Phone 9288 3651
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Arthritis Victoria www.arthritisvic.org.au Arthritis USA www.arthritis.org Arthritis Research Campaign UK www.arc.org.uk National Institute for Arthritis, Musculoskeletal and Skin Diseases www.nih.gov/niams American College of Rheumatology www.rheumatology.org Medlineplus www.medlineplus.gov
ARTHRITIS VICTORIA If you would like further information please contact our telephone information service on (03) 8531 8000 or 1800 011 041 (country callers)
This sheet may be photocopied without permission. Copying of any other kind requires prior written permission from Arthritis Victoria. Prepared by Education & Services staff, Arthritis Victoria, Edited June 2006. This material is for your information and is not intended to be medical advice. You are encouraged to review the information provided with your doctor or relevant health professional.
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