Donate to “Stepping Out For Scleroderma” Fundraising Walks:
Farmingdale, June 11 · Ridgefield Park, June 16
Scleroderma, or systemic sclerosis, is a connective tissue autoimmune disease. It comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin, as hardening of the skin is one of the most visible manifestations of the disease.
It is estimated that about 300,000 Americans have scleroderma. Its symptoms vary greatly, and the effects can range from very mild to life threatening. The seriousness of scleroderma will depend on the extent of which parts of the body are affected. Since scleroderma symptoms are similar to those of other autoimmune diseases, diagnosis is difficult — there may be many misdiagnosed or undiagnosed cases.
There are two major classifications of scleroderma: localized and systemic. Localized scleroderma is more common in children, whereas systemic scleroderma is more common in adults. Overall, female patients outnumber male patients about 4-to-1. The exact cause or causes of scleroderma are still unknown. Most patients do not have any relatives with scleroderma and their children do not get scleroderma, though research indicates that there is a susceptibility gene.
Participating actively in one’s own health care is of prime importance to the person with scleroderma. It is equally important to cooperate and communicate effectively with the physician who is managing the disease. While the person with scleroderma and the physician are the focal point of the management “team,” many other people and resources can also form a health and support “network.” Family and friends can provide emotional support for the person with scleroderma, encourage following the recommended treatment program, and assist in carrying out activities that have become difficult.