Irish Raynaud's & Scleroderma Society

FAQs in Scleroderma

What is the connection between Raynaud’s and Scleroderma?

Raynaud’s is usually the first symptom of scleroderma and may occur many years before other symptoms. Raynaud’s is found in over 95% of scleroderma patients.

Who gets Scleroderma?

Scleroderma is a “hidden” disease. It seems rare, but it is actually more widespread than muscular dystrophy or multiple sclerosis. It is more common in women than men. It can start at any age, but is more rare in children. It is distributed widely both geographically and racially. About 10% of Irish people have Raynaud’s and of these some 2% go on to develop scleroderma.

Are there tests to diagnose Scleroderma?

Blood tests will show the presence of specific antibodies that indicate scleroderma. One specific marker is Scl-70,k which is present in 30% of patients, usually those with Diffuse Scleroderma. Changes in the nailfold capillary, seen in a non-invasive test using a Nailbed Capillaroscopy System, are also diagnostic. Some success has been had with scanning techniques and genetic predictors. Lung and heart tests are necessary to check ongoing health.

What determines the pattern of Scleroderma?

It is not necessary to learn the names of the different subtypes of scleroderma, as your own case will be unique. It is better to regard it as a medical disorder in which tissue thickening and poor circulation can occur along many different routes in the body, rather than as one disease with a predictable pattern. You and your doctor should be alert to any trouble, but consider your disease positively as a series of problems with individual treatments.

How serious is Scleroderma?

Any chronic disease is serious, but the effects of scleroderma can range from very mild to very severe, and the seriousness will depend on what parts of the body are affected and the extent to which they are properly treated. Early diagnosis, regular monitoring, and treatment by a qualified physician are essential. Sometimes scleroderma seems to go into remission - it is not cured, but remains at its present level without further progression. For reasons not yet understood, it may flare up again in the future. Every year the treatment and management of scleroderma is improving with new drugs and a greater understanding of the disease.