Scleroderma sufferer says there's hope
By Karen Shideler
KNIGHT RIDDER NEWSPAPERS
WICHITA, Kan. - Sharon Leiker figures she was lucky, in a way: It took only a few months for doctors to realize she had scleroderma.
Often, it takes years.
But scleroderma doesn't leave people feeling lucky for long. There's no cure, only ways to mitigate its symptoms and slow its progression.
Scleroderma means "hard skin." It's an autoimmune disorder in which the body attacks itself by overproducing collagen. Skin and other organs can become tight and thickened, which makes movement difficult.
"I kept getting stuck in bathrooms," Leiker says, because of fingers that wouldn't work as they should.
Scleroderma also can be painful: Leiker's carpeting felt like glass on her feet, and she couldn't wear necklaces.
"Some people only get it on the outside; some people only get it on the inside; some people get both," she says. Hers also affects her lungs.
Leiker takes about 10 medications for her symptoms. One can shut down her kidneys if she doesn't drink enough water. Another draws calcium from her bones.
"All those medicines help slow it down, (but) there really isn't anything out there that stops it," she says.
She has found help in a support group for people with scleroderma. For a while after her diagnosis, she couldn't find anyone like her, anyone to ask, "Is this scleroderma, or is this something else?" when something cropped up.
Leiker says her message to others would be "not to give up hope. . . . There's a lot of hope out there." And, she says, "a positive attitude, as with any disease, is so important."
In addition to her medication and the support group, Leiker also depends on stretching, yoga and hand creams to help keep herself limber and mobile.
If you see someone doing strange-looking mouth stretches as she's driving, it's probably her, she says with a laugh.
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