Welcome to My Personal Stepping Out to Cure Scleroderma Page!
Thank you for visiting my personal fundraising page to support the "Stepping Out to Cure Scleroderma" event!
Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to support me and help raise funds for other scleroderma patients. To make a donation, click the "Donate Now" button that appears under my photo. Then, just follow the instructions.
If you would like to join me at the event, and walk and help raise funds, please click on “Join My Team” (Team Cat) and follow the directions.
Please help today! I sincerely appreciate your support, and please share this with anyone who you think might want to help.
If you want to hear my story, please read on.
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For 26 years I have lived with scleroderma, an inflammatory and vascular disease in which the body's immune system attacks its own tissue. It wasn't until the Amherst Woman's Club held a meeting in November 2018 on the topic, when I crossed paths with two others (Audrey and Terry) who knew firsthand its effect because they were dealing with it too. It was the first time I had ever met anybody with scleroderma, and it was good having someone else to relate to.
The Amherst Woman's Club, Sweet Briar College and the Delaware Valley chapter of the National Scleroderma Foundation are sponsoring the 3rd "Stepping Out to Cure Scleroderma" walk at 10 a.m. Saturday, March 4 at the college's indoor track. My friends, Suzanne Raine and Margaret Ann White, club members and co-chairs, held the first ever Scleroderma Walk in Virginia March 2018 with a threefold mission: to bring awareness to the disease, support those who are coping with it and to raise money for research to find a cause and cure.
The National Institute of Health estimates more than 300,000 people in the United States have some form of scleroderma. The disease mainly affects my hands. I have lost three fingers on my right hand, along with some internal organ issues, lung damage, hardening of the esophagus, and stage 3 kidney disease. I take so much medication just to keep it from getting worse.
I was living in Massachusetts when I was first diagnosed, then moved to Pennsylvania before moving to Virginia. Doctors initially told me I had lupus before I learned I had scleroderma. I over-produce calcium which was excrutiatingly removed via a great big needle into my joints and later operations in an attempt to save my fingers which didn't work.
A few years ago I learned how to quilt and I can use the sewing machine even though I only have a thumb and little finger on my right hand. I'm right-handed and I don't think my brain will ever register that I can't pick things up with my right hand. Unfortunately, mobility of my hands are becoming limited and I dread the day I can no longer quilt. The whole thing about this disease is you have to remain positive. If you don't, you can really get depressed. So I try to look happy even when I'm in terrible pain. I'm very fortunate to have some really great friends who are incredibly supportive and who take really good care of me (we're known as the Posse) and I'd be lost without my husband Jack who has to do more and more for me as this disease progresses. Without their support, scleroderma would probably get the best of me.
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