Scleroderma

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Category Description:

Scleroderma is a chronic disease that can be generally described as the pathological thickening and hardening of the skin. It is a systemic autoimmune disease characterized by the development of excess fibrous connective tissues, antibodies acting against one's own tissues, and alterations. The swelling and collagen buildup brought about by the disease causes the loss of skin elasticity. Two major forms of the disease exist: the limited systemic sclerosis/scleroderma and diffuse systemic sclerosis/scleroderma.

The first form of scleroderma (formerly known as CREST syndrome) introduces cutaneous manifestations primarily affecting the face, arms, and hands. Pulmonary arterial hypertension is the most serious complication that may develop in a person affected by this form of scleroderma and it can be observed occurring in over 30% of patients.

Diffuse systemic sclerosis/scleroderma on the other hand is a more serious form of scleroderma as it can be disabling. This form is rapidly progressing. It tends to affect a large area of the skin and can even affect internal organs such as the kidneys, esophagus, lungs, and the heart.

Scleroderma can be inherited though the genes responsible for the disease are yet to be identified. The causes are likewise not yet determined. There is no known for the disease itself but treatments to address symptoms or the manifestations of scleroderma can be used.

This category features websites that provide information and resources relevant to scleroderma. Also listed are organizations and sources for new information and research updates.

  • American Society for Scleroderma Research (ASFSR)  - Volunteer organization founded through the goal of bringing people together to raise funds that would support the search for a cure for scleroderma.
  • Bay Area Scleroderma Support Group  - Group of patients and care providers who meet hold monthly meetings at Kaiser Hospital, Niles West Building. Site presents news and stories.
  • I Have Scleroderma  - Site created by and for people with scleroderma. Features stories, tributes, brief anecdotes showing peoples' perceptions or reactions to scleroderma, art works, and related links.
  • International Scleroderma Network (ISN)  - Serves as a source for global research, support, education, and awareness pertaining to scleroderma and related illnesses.
  • Johns Hopkins Scleroderma Center  - Specialist care provider for patients with scleroderma and related conditions with a team of doctors board-certified in rheumatology who are also full time faculty members of The Johns Hopkins University School of Medicine.
  • Medscape Reference: Scleroderma  - Overview of the disease and information about its pathophysiology, epidemiology, and risk factors.
  • NIAMS Handout on Health: Scleroderma  - Answers to questions about scleroderma's causes, risk factors, diagnosis, similar conditions, treatment, and research highlights.
  • Scleroderma Clinical Trials Consortium  - Charitable nonprofit organization established to seek better treatment for scleroderma. Undertakes clinical treatment trials of promising new medications.
  • Scleroderma Foundation  - Organization created from the merger of the United Scleroderma Foundation and the East Coast-based Scleroderma Federation. Aims to improve the lives of scleroderma patients through mutual support, research, and medical and public education.
  • Scleroderma Research Foundation  - Presents the history of the foundation, news and reports, research updates, grant guidelines, research and fellowship program details, mailing list, and resources for patients and physicians.
  • Scleroderma Society  - Affiliate organization of the International Scleroderma network. Provides assistance and support to persons with scleroderma, raises public awareness of the disease, and funds pertinent scientific and medical research.
  • Scleroderma Society of Canada  - Volunteer-staffed registered charity committed to promoting awareness of scleroderma, supporting cure research, and providing support and information to those affected by the disease.
 
 
 
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