Scleroderma Disease

Fact: Fewer than 500,000 people in the U.S. have Scleroderma

What is Scleroderma?

Scleroderma (skleer-oh-DUR-muh) 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. It is a type of autoimmune disorder in which the immune system mistakenly attacks and destroys healthy body tissue. In other words, it is an autoimmune disease of the connective tissue featuring skin thickening, spontaneous scarring, blood vessel disease, and varying degrees of inflammation, associated with an overactive immune system. 

The cause of scleroderma is not known. Researchers have found some evidence that certain genes are important hereditary factors, but the environment seems to also play a role. The result is activation of the immune system in a susceptible individual, causing damage to the inner lining of tiny blood vessels and injury to tissues that result in scar tissue formation and the accumulation of excess collagen.

How can someone manage Scleroderma?

While there is no proven cure for scleroderma, much can be done to prevent, minimize or alleviate its effects and symptoms. Scleroderma symptoms vary greatly from individual to individual; the manner in which each person responds to treatment also varies greatly; and there are many treatment options. It is important that a physician experienced in scleroderma management works out an individually tailored program to meet the specific needs of a person with this disease. Close cooperation with the physician will help him or her develop such a program.
The severity of scleroderma varies from person to person.   It can be a mild annoyance, or it can cause significant clinical problems.  For others, it can become life threatening. Most people have episodes where the illness improves or even goes into remission.
Scleroderma is chronic. This means that it lasts for your lifetime. However, like diabetes, high blood pressure, heart disease, and psoriasis, scleroderma can be treated and the symptoms managed.  The cause of scleroderma is unknown and there is currently no cure, but there are treatments that can effectively prevent or limit the damage caused by this chronic disease.
Symptoms of Scleroderma

​Some types of scleroderma affect only the skin, while others affect the whole body.
  • Localized scleroderma. Often affects only the skin on the hands and face. It develops slowly, and rarely spreads in the body or causes serious problems.
  • Systemic scleroderma, or sclerosis. May affect large areas of skin and organs such as the heart, lungs, or kidneys. There are two main types limited disease (CREST syndrome) and diffuse disease.
Skin symptoms of scleroderma may include:
  • Fingers or toes that turn blue or white in response to cold temperatures (Raynaud's phenomenon)
  • Hair loss
  • Skin that is darker or lighter than normal
  • Stiffness, and tightness of skin of fingers, hands, forearm, and face
  • Small white lumps beneath the skin that sometimes ooze a white substance that looks like toothpaste
  • Sores (ulcers) on the fingertips or toes
  • Tight and mask-like skin on the face
Bone and muscle symptoms may include:
  • Joint pain
  • Numbness and pain in the feet
  • Pain, stiffness, and swelling of fingers and joints
  • Wrist pain
Breathing problems may result from scarring in the lungs and can include:
  • Dry cough
  • Shortness of breath
  • Wheezing
Digestive tract problems may include:
  • Bloating after meals
  • Constipation
  • Diarrhea
  • Difficulty swallowing
  • Esophageal reflux or heartburn
  • Problems controlling stools

Want to learn more?

The following are organizations and/or websites dedicated to providing information and education surroundingScleroderma. These organizations are dedicated to research, education, awareness, and/or support. They are listed in Alphabetical order without any preference or prejudice. Listing these organizations is not a recommendation or referral in any regard for seeking treatment or consultation or support for treatment.

American College of Rheumatology
John Hopkins Scleroderma Center
Scleroderma Foundation