What is Scleroderma? It’s Rare and It Slowly Mummifies the Body

My daughter Hilary ran the “Stepping Out to Cure Scleroderma” 5k race in Overpeck Park Leonia, NJ.  Not a big crowd running this race and neither was the crowd gathered there to support those who raced.  I assumed the size of the crowd was an indicator of the rarity of this very terrible disease. Those effected by it certainly know how devastating it can be and those who do not, often reply, “sclero what”?

But Hilary knows as do I. She lost a father and I lost a husband, Russell, who struggled a nine year battle with scleroderma.  Scleroderma is a group of rare, progressive diseases that involve the hardening and tightening of the skin and connective tissues-fibers which provide the framework and support of the body. Not only hard skin but hard everything!  It progresses rapidly in most cases and affects not only the skin but one or more internal organs, most common being the heart, lungs, esophagus and kidneys.  Simply stated it slowly mummifies the body.

Watching someone you love suffer is no easy task no matter what the disease.   Let’s face it, we’ve all heard of cancer, diabetes, multiple sclerosis.  In no way am I minimizing how devastating any disease can be.  But. . .

How many of you reading this have heard of scleroderma?  Not too many, I am sure.  With the help of Russell’s long time good bud Hal and “FriendlySuggestions.com” I would like to help spread awareness of this disease.  Awareness, funding, research, cure.  Hopefully in my lifetime.  One can only hope, right?

Please visit www.scleroderma.org, the Scleroderma Foundation website for more information.  Check it out. See what it’s all about and how you can help.


Another good way to spread awareness about Scleroderma is to become a fan of the Scleroderma Foundation on Facebook! Please do what you can to let your friends know about this horrible disease and hopefully it will get the attention and the cure it needs!  Thank you!

Pictured are Russell and Mari’s daughter Hillary, running in the “Stepping Out to Cure Scleroderma” 5K race.  And below Russell and Hal, friends since the 4th grade!  We miss you Russell, we think of you and we wish you were here!  May 6th this year Russell would have been 60 years old!



The Scleroderma Foundation is a national nonprofit health organization dedicated to a three-fold mission of Support, Education, and Research to help fight this challenging autoimmune disease.

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