Unless you are personally affected by scleroderma, such as a patient or the family member or a friend of someone with the disease, it’s highly unlikely that you have ever heard of it. “Scleroderma” comes from the words: “sclero” meaning hard and “derma” meaning skin. It is a chronic disease where an overproduction of collagen disturbs a person’s connective tissue and autoimmune system, essentially turning one’s body to stone. The disease affects about 300,000 people in the United States, and women are three to four times more likely to develop it than men.

Scleroderma symptoms vary greatly in each person. Some people develop visible symptoms, such as tight, hardening skin, where everyday tasks like open doors or driving your car can become unbearable. Other people may experience “invisible” symptoms, affecting internal organs, like the heart, lungs or kidneys.

Many people living with scleroderma can also experience these other symptoms or overlapping conditions:

 

  • Raynaud Phenomenon. About 90 percent of patients experience this vascular response to changes in temperature or stress. The result is a person’s fingers or toes turning blue or white because of the lack of blood flow.
  • Sjogren Syndrome. This symptom is characterized by an unusual dryness in the mouth or eyes. The excessive dryness can cause problems speaking or swallowing.
  • Pulmonary Arterial Hypertension. An increased blood pressure in a person’s lungs can cause strain on his or her heart, while making every breath difficult.

 

Currently, there are no medications or treatments available for scleroderma. There are only medications available to help treat and manage the underlying symptoms.

The Scleroderma Foundation has 24 chapters and more than 150 support groups across the United States. We are committed to helping people improve their quality of life while battling this horrible disease. The organization also is one of the leading nonprofit funders of research to help find the cause and cure of the disease.

We hope you will join @scleroderma for the weekly #treatdiaries chat at www.tweetchat.com at 8 p.m. Tuesday, Dec. 4! We are on a mission to educate as many people as we can about this disease, and help them access the support and education resources to manage living with scleroderma.  We also encourage you to join TreatmentDiaries.com and connect with 1,000’s of individuals living with this condition in search of support and treatment insight.  It’s free, anonymous and only takes seconds to join!

If you’d like to learn more about scleroderma, please visit www.scleroderma.org or call (800) 722-HOPE (4673).

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