If you’ve ever experienced the painful hardening and tightening of patches of skin, ranging in severity from uncomfortable to debilitating, you know how Scleroderma can affect you.

But unless you’ve got it or know someone who does, there’s a good chance when you hear the word Scleroderma you may pause and say “what?”

That’s one of the reasons for the  11th Annual Stepping Out to Cure Scleroderma Walk and Kids Fun Run at Cherry Creek State Park on June 20th.

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“Our goal is to raise awareness about the disease and its ramifications and to raise funds for education and research,” says Cyndy Besselievre, the Executive Director of the Scleroderma Foundation-Rocky Mountain Chapter.

Besselievre became passionate about Scleroderma after she lost her mother to this disease in 2007.  “She mostly had tightening of the skin and acid reflux and didn’t want to eat. She went into remission for 18 years.  But then it moved into her lungs.” Besselievre knew that she wanted to help others, like her mom, who lived with such chronic pain and loves taking part in the annual walk because it means so much to those who are suffering.

So why don’t we hear more about it? The Scleroderma Research Foundation held a fundraiser in Los Angeles last week, hosted by actor Bob Saget, whose sister died of the disease in 1994.  Speaking to a Variety Magazine reporter, Saget said, “You can see what it is, because people have it. It affects their skin, there’s too much collagen in their bodies; 80% of its victims are women in their prime of their lives. Maybe that’s the reason, for so many years, it went unnoticed. My friend (Scleroderma Research Foundation founder) Sharon Monsky believed that.”

The word Scleroderma comes from two Greek words:  ‘sclero’ which means hard, and ‘derma’ which means skin, literally a hardening of the skin, although it can also affect internal organs.  For some, scleroderma only affects the skin.  But in others, scleroderma attacks blood vessels, internal organs and the digestive tract.  This disease affects 300,000 people in the United States, mostly women, about the same number of people who have Multiple Sclerosis.

The Scleroderma Foundation  identifies two types of scleroderma:  localized, usually found in only a few places on the skin or muscles and systemic, which may affect the connective tissue in many parts of the body and is much more destructive and debilitating.

types-scleroderma-chart

(Credit: Scleroderma Foundation)

 

Because autoimmune diseases are so challenging to diagnose, and Scleroderma doesn’t have a concise definition, getting a proper diagnosis can be difficult.

While there is no cure for scleroderma there are many treatments including medication, physical therapy and surgery.

John Niemi, President of the Scleroderma Foundation-Rocky Mountain Chapter, became involved to help this chapter raise money during their annual walks.  “Unfortunately, several board members suffer from Scleroderma so they would get sick and were unable to fulfill their duties, so I joined the board and I haven’t looked back.”

He’s among those who are calling for more research into this disease.  The Scleroderma Foundation currently funds research to try to find a cure and improve conditions for those living with the disease, but more research dollars are needed.

On June 20th, you’re encouraged to bring the kids and head out to Cherry Creek State Park.  Registration is at 9am and the kids fun run begins at 9:30, with the walk at 10am.  Check out the Stepping Out to Cure Scleroderma Walk on facebook and click here to register for the 3k or 5k walk.

And look for their upcoming Food Fight event where chefs will fight for this hard disease.  That’s coming up on September 20th at the Builders Appliance Center in Englewood.

Scleroderma is a hard word to pronounce and a disease makes life harder all over.  Don’t let that stop you, visit hardword.org and tell just one person about Scleroderma.  And spread the word.

Then join the effort to raise awareness and help fund research to find a cure for Scleroderma.   Sign up today and walk on June 20th!