By Stephanie Stahl

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PHILADELPHIA (CBS) — Drinking water can be an ordeal for Kathy Griffin. She has scleroderma, a rare autoimmune disease that causes the skin and other organs to get thick and hard because the body generates too much collagen.

“I’ve had a lot of surgeries for my situation,” said Griffin.

It affected her heart and kidneys and because of the narrowing of her esophagus eating and drinking food is difficult.

Kathy was diagnosed 23 years ago when she was 34.

“At the time I was very upset because there’s no cure for it,” said Griffin. “They said a lot of people with scleroderma don’t live long,” said Griffin.

scleroderma

Credit: CBS3

But with medications and taking care of herself, Kathy is surviving as her appearance continues to change with the hardening of her skin.

She eventually lost all of her hair and now wears a wig as a volunteer working with the Scleroderma Foundation to raise awareness and money for research.

Kathy is competing in the Mrs. New Jersey America Pageant.

“I’m Mrs. Camden County then I’m going for Mrs. New Jersey America,” said Griffin.

The pageant happens in May next year. In addition to the evening gown and swimsuit presentations, there will be interviews where Kathy hopes to talk more about scleroderma.

“I always wanted to do something for the disease and I figured this would be the best platform,” Griffin said.

It’s not known what causes scleroderma — cases can be mild or more severe. The hope is that with more money for research doctors can find better treatments.

CLICK HERE to learn more about the walk.