June is Scleroderma Awareness Month
What is Scleroderma?
Scleroderma is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.
In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.
What Are the Types of Scleroderma?
Scleroderma’s main types are localized and systemic. Localized means the disease affects only certain parts of the body. Systemic means it can affect the whole body.
The localized type often affects only skin tissues. It does not harm major organs. It may get better or go away without help. But it can be severe in some people and can leave skin damage.
The systemic type affects the skin, tissues under it, blood vessels, and major organs.
Scleroderma's signs and symptoms vary, depending on which parts of your body are involved:
Skin. Nearly everyone who has scleroderma experiences a hardening and tightening of patches of skin. These patches may be shaped like ovals or straight lines, or cover wide areas of the trunk and limbs. The number, location and size of the patches vary by type of scleroderma. Skin can appear shiny because it's so tight, and movement of the affected area may be restricted.
Fingers or toes. One of the earliest signs of scleroderma is an exaggerated response to cold temperatures or emotional distress, which can cause numbness, pain or color changes in the fingers or toes. Called Raynaud's disease, this condition also occurs in people who don't have scleroderma.
Digestive system. In addition to acid reflux, which can damage the section of esophagus nearest the stomach, some people with scleroderma may also have problems absorbing nutrients if their intestinal muscles aren't moving food properly through the intestines.
Heart, lungs or kidneys. Scleroderma can affect the function of the heart, lungs or kidneys to varying degrees. These problems, if left untreated, can become life-threatening.
Because scleroderma can take so many forms and affect so many different areas of the body, it can be difficult to diagnose. A rheumatologist (a doctor who treats arthritis and other diseases that cause swelling in the joints) may lead your health care team and refer you to other health experts.
• Scleroderma is an autoimmune disease whose symptoms typically include some or all of the
following: sensitivity to cold in extremities, thickening of the skin, shortness of breath,
difficulty swallowing, joint stiffness and pain, and damage to internal organs.
• Autoimmune diseases, which affect more than 50 million Americans, are the third leading
cause of death in the United States.
• 300,000 cases of scleroderma are estimated in the United States.
• 80% of scleroderma patients are female.
• Scleroderma typically strikes between the ages of 25 and 55.
• 95% of scleroderma cases begin with Raynaud Phenomenon (hands and feet abnormally
sensitive to cold.)
• Federal research funding for scleroderma lags behind other diseases of similar prevalence.
• Misdiagnosis is common. It can take three years or more for an individual to be diagnosed
and receive appropriate treatment, often due to lack of familiarity with the disease among
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