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“Because of Project Scleroderma’s work patients feel less alone. They are making a huge impact on a community that often feels lost and forgotten.”

What is Scleroderma?

The term scleroderma literally translates to “hard skin.” It is an autoimmune disease in which the body’s immune system mistakenly attacks its own connective tissues. Scleroderma involves an overproduction of collagen and presents itself in two major forms:

Localized Scleroderma
The milder of the two
Affects limited areas of the skin and muscle
Can cause excessive scarring, swollen, tight or hard skin.

Systemic Scleroderma
Potentially involves joints, blood vessels and major organs
Can cause serious, sometimes life-threatening damage to the lungs, heart, kidneys, esophagus, and gastrointestinal tract.

What are the symptoms?

Among the early signs of scleroderma is Raynaud’s phenomenon (pronounced RAY-KNOWDS), which is identified by fingers that become very sensitive to cold, causing the fingers to change colors. The changes of color are caused by the spasm and narrowing of the blood vessels. This reaction can be caused by emotional stress as well. There are two types of Raynaud’s Phenomenon:

Primary Raynaud’s
Raynaud’s phenomenon is a common condition and most people with Raynaud’s phenomenon will NOT develop scleroderma. These individuals have what is referred to as primary Raynaud’s.

Secondary Raynaud’s
While only a small percentage of people with Raynaud’s phenomenon develop scleroderma, almost all scleroderma patients have Raynaud’s symptoms. This is referred to as secondary Raynaud’s phenomenon, so-named because it is secondary to the scleroderma.

Additionally, fingers and hands that become stiff and puffy can also be early indicators of scleroderma.

What causes Scleroderma?

At the moment there is no known cause of scleroderma and no way of preventing this disease. It is more common in females than males, yet it affects all genders, all ages and all racial groups. The peak of the disease onset occurs in the fourth and fifth decades of life. Familial scleroderma is rare, and there is no evidence of genetic inheritance.

*If you or a loved one is suffering from Scleroderma, we’re here for you. Please contact us. 

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Project Scleroderma (a 501 c 3 Non Profit) has a primary mission to raise the global level of scleroderma awareness.

“Dear Scleroderma”

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Patient Support

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Volunteer and Fundraising

“Dear Scleroderma”

A Video Series

Patient Support

Making Life Easier

Get Involved

Volunteer and Fundraising