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.

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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!

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http://www.scleroderma.org

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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7 comments for “What is Scleroderma? It’s Rare and It Slowly Mummifies the Body

  1. Anonymous
    July 29, 2010 at 11:02 am

    Mari, my heart goes out to you and your family! Keeping you, and your family, in my prayers and hopefully, one day, they will find a cure for this horrible disease.

  2. Mari Gibbs
    July 29, 2010 at 6:51 pm

    Many thanks.

  3. Margaret
    July 31, 2010 at 7:42 am

    Thanks for the information Mari. I had heard of the disease but didn’t now the details. My heart goes out to you and your family.

  4. January 12, 2011 at 6:21 am

    Pretty nice post. I just stumbled upon your blog and wanted to say that I have really enjoyed browsing your blog posts. In any case I’ll be subscribing to your feed and I hope you write again soon!

  5. DIANA GRASSI GROSSMAN
    May 6, 2011 at 12:34 pm

    TO THE GIBBS FAMILY: I WENT TO SCHOOL WITH RUSSELL AND HE WAS ALWAYS SUCH A NICE, QUIET, AND FUN GUY. TO BE HONEST, I HAD NEVER HEARD OF THIS UNTIL JUST NOW. I JUST WANTED TO LET YOU KNOW THAT I AM SO SORRY AND HEARTBROKEN FOR ALL OF YOU, AND SO VERY SAD THAT WE HAD TO LOSE HIM TO THIS TERRIBLE DISEASE. I AM KEEPING YOU ALL IN MY PRAYERS AND PRAY TO GOD THAT THERE WILL SOMEDAY BE A CURE.

  6. Lesley Goddin
    May 6, 2011 at 3:44 pm

    Mari and family: I have heard of scleroderma, but never know of anyone who actually had it. I remember Russell from school. I’m sorry he and your family had to suffer the ravages of this disease. I hope treatment and cure are found for it soon. Thank you for sharing your love, pain and experience to educate the rest of us. With prayers, Lesley

  7. MRS G
    June 25, 2014 at 12:36 pm

    Mari…I just saw this today because I had to get a new computer. You made me cry…good girl, spread the word to everyone. luv Nana

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