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Kappy: Sister of Diffuse Scleroderma Patient

My sister as well has weathered the terrifying storm of diffuse scleroderma and come out on the other side well and whole.

Star Ornament photography by Shelley Ensz Five years ago my sister was diagnosed with diffuse scleroderma and the prognosis seemed quite grim. During the second year of the disease, I came across an article of a man with the same diagnosis, who had not only survived, but thrived and years later was left with only a few reminders of the ordeal he had endured.

I cannot begin to tell you how much that one article meant to me. It represented hope. Hope that was desperately needed. So now, I offer my sister's story with the belief that it too will inspire the same hope I once found.

Much like the man I read about several years ago, my sister as well has weathered the terrifying storm of diffuse scleroderma and come out on the other side well and whole. She has few signs that the disease ever once existed inside her body. Aside from the common esophageal problems, she escaped unscathed. Not one of her internal organs were ever affected as was predicted. Her skin, which was once quite tight, is now smooth to the touch.

I give credit of course to a wonderful loving God who answers prayers, to my sister's strength and determination, and to that beacon of hope represented in the story of that man. He allowed me to keep a vision of my sister healthy, joyous and alive, and that vision is now a reality.

I hope my story does the same for you. Diffuse scleroderma is NOT a death sentence. Many have survived, you or your loved one will do the same. Believe it, see it every day. Of all the medications my sister was given, none was as potent as hope.

One of the most profound things my sister said to me was that she could see darkness approaching her, she could actually see it in her peripheral vision, but each time it approached, she refused to let it engulf her, she refused to let it win. Instead she fought, and she won. You can do the same. Keep fighting.

To Contact the Author

(Email address withheld by request.)
Story posted 2-21-00
Story edited 7-27-03 SLE

Story Artist: Shelley Ensz
Caregiver's Stories
Diffuse Scleroderma
Go to Karen: Mother of Generalized Guttate Morphea Patient
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