June is Scleroderma Awareness Month ~ Do You Know What Scleroderma Is?

Unless you know someone who has this illness, or are in the healthcare profession, you may not be aware of the devastating disease, scleroderma.

I personally have no family or friends with scleroderma. However, when I worked as a nurse on the hospital units, on a couple of occasions I have treated patients with this little known disease.

What is Scleroderma?

 

• Scleroderma is an autoimmune disease with no known cause and no cure.
• It is a rare disease that involves the hardening and tightening of the skin and connective tissues, which are the fibers that provide the framework and support for your body.
• Scleroderma results from an overproduction and accumulation of collagen (a fibrous type of protein that makes up your body’s connective tissues).
• In some people, scleroderma affects only the skin. But in many people it affects structures other structures, such as blood vessels, internal organs and the digestive tract.
• Scleroderma is so rare; it affects only 1 in 906 people.  It hits women the hardest, with 80% of patients being female.

Signs and Symptoms

 

According to Scleroderma Society of Canada:

“Scleroderma is a complex disease with many possible symptoms that can affect various parts of the body. It is highly individualized so symptoms and severity differ greatly, ranging from mild to potentially life threatening.

The most characteristic feature of scleroderma is skin thickening or fibrosis. Less visible but of major importance are the tiny lesions that occur in small blood vessels (vascular lesions), which may involve major organs.  Pain, ranging in severity from uncomfortable to debilitating, is a common characteristic of the disease.

Other common symptoms may include, but are not limited to:  Raynaud’s Phenomenon; General fatigue; Inflammation of the muscles (i.e. polymyositis); Swelling, then skin thickening (i.e. fibrosis) or tightness, particularly in the hands; Joint or bone aching; Stiffness of hands and feet; Skin discoloration; Heartburn; Swallowing difficulties; Dry mucus membranes; Calcium deposits under the skin; Unexplained ulcers on fingers or toes; Shortness of breath and Bowel dysfunction”

Treatment

 

Currently, there is no treatment that controls or stops the underlying problem, which is the overproduction of collagen. Therefore, treatment and management focuses on relieving symptoms and limiting damage.

Scleroderma affects thousands of people, but there are billions who know nothing about it.   Research is vital, but because so few people are aware of the disease, researchers don’t always get the resources they need.

Take the pledge ~ tell even one person about the autoimmune disease that has no cause or cure. #HardWord #Scleroderma

Do you know what scleroderma is?

Do you know anyone affected by this illness?

“Disclosure: I am part of the Scleroderma Awareness Campaign with Influence Central and I received special perks as part of my affiliation with this group. The opinions on this blog are my own.”