The severity of these symptoms varies greatly among patients: Some having scleroderma of only a limited area of the skin (such as the fingers) and little involvement of the underlying tissue, while others have progressive skin involvement. Digital ulcers—open wounds especially on fingertips and less commonly the knuckles—are not uncommon. Other organs
Diffuse scleroderma can cause musculoskeletal, pulmonary, gastrointestinal, renal, and other complications. Patients with greater cutaneous involvement are more likely to have involvement of the internal tissues and organs. Most patients (over 80%) have vascular symptoms and Raynauds phenomenon, which leads to attacks of discoloration of the hands and feet in response to cold. Raynauds normally affects the fingers and toes. Systemic scleroderma and Raynauds can cause painful ulcers on the fingers or toes, which are known as digital ulcers. Calcinosis (deposition of calcium in lumps under the skin) is also common in systemic scleroderma, and is often seen near the elbows, knees, or other joints. MusculoskeletalThe first joint symptoms that patients with scleroderma have are typically nonspecific joint pains, which can lead to arthritis, or cause discomfort in tendons or muscles. Joint mobility, especially of the small joints of the hand, may be restricted by calcinosis or skin thickening. Patients may develop muscle weakness, or myopathy, either from the disease or its treatments. LungsSome impairment in lung function is almost universally seen in patients with diffuse scleroderma on pulmonary function testing, but it does not necessarily cause symptoms, such as shortness of breath.
Society and culture
Support groups
The Juvenile Scleroderma Network is an organization dedicated to providing emotional support and educational information to parents and their children living with juvenile scleroderma, supporting pediatric research to identify the cause of and the cure for juvenile scleroderma, and enhancing public awareness.In the US, the Scleroderma Foundation is dedicated to raise awareness of the disease and assist those who are affected.The Scleroderma Research Foundation sponsors research into the condition. Comedian and television presenter Bob Saget, a board member of the SRF, directed the 1996 ABC TV movie For Hope, starring Dana Delany, which depicts a young woman fatally affected by scleroderma; the film was based on the experiences of Sagets sister Gay.Scleroderma and Raynauds UK is a British charity formed by the merger of two smaller organisations in 2016 to provide support for people with scleroderma and fund research into the condition. Prognosis
A 2018 study placed 10-year survival rates at 88%, without differentiation based on subtype. Diffuse systemic sclerosis, internal organ complications, and older age at diagnosis are associated with worse prognoses. Research
Given the difficulty in treating scleroderma, treatments with a smaller evidence base are often tried to control the disease.