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Former MTV VJ tells of battle with chronic illness

By Kat Carney
CNN Headline News

Karen Duffy: "[Sarcoidosis] is not a gift that I would have picked out for myself. But now that I have it ... it's made me braver."

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Karen Duffy

(CNN) -- In the mid-1990's, model and former MTV VJ Karen Duffy, aka Duff, was one of Hollywood's rising stars.

But almost as quickly as she appeared on the scene, she was hit with a devastating illness.

I spoke with her about the first time she started having symptoms.

"I had this really bad headache," Duffy remembers. "And I started taking aspirins, and then I realized, this headache is really something that I've never experienced before."

That was in 1995, and Duffy was in Los Angeles, California, for the Emmy Awards. She says she managed to make it through the ceremony despite the intense pain in her head, but it wasn't easy.

Duffy described her headaches as, "A burning, sharp pain that felt like I was being electrocuted, and it wasn't consistent. It was a dull ache. It would be every 30 to 45 seconds."

Suspecting something was seriously wrong, she flew home to New York the next morning.

"[I went] right off the plane [and] right to my doctor's office," Duffy said. "When he saw me and saw the level of pain that I was in. He said, 'I'm going to call right now and send you over to get a series of MRIs.' My life as a healthy person pretty much ended and my whole new life began, which is having to deal with a chronic illness."

After a series of tests, Duffy said, her doctors narrowed the list of possible problems to multiple sclerosis, ALS, AIDS, non-Hodgkin's lymphoma and sarcoidosis.

After excluding the first four, Duffy said, her doctors concluded that she had a rare form of sarcoidosis.

Generally speaking, sarcoidosis is a chronic inflammatory disease with symptoms ranging from lung and eye problems to arthritis.

For Duffy, sarcoidosis meant intense, chronic pain throughout her body, as well as other problems.

"I was losing balance; my gait was off. I lost feeling in my hands and in my feet. It was really a lot of the things I thought were going to pass."

But they didn't pass, and Duffy says she underwent numerous treatments, including steroid doses and chemotherapy, to manage the disease.

"Most important was the pain medication. If I didn't have this, I would be curled up in a ball. It was just so overwhelmingly painful."

But despite the pain, Duffy refused to feel sorry for herself.

"If I was going to have to live with a chronic illness, I didn't want to be bitter. And if I got better I didn't want to feel like 'why me?'"

In 2000, Duffy detailed her experience with sarcoidosis in The New York Times bestseller "Model Patient: My Life as an Incurable Wise-Ass."

Her portrait also appears in the "Many Faces of Pain" exhibition sponsored by a manufacturer of pain medication.

"Sarcoidosis isn't some burden that I carry. It's not a gift that I would have picked out for myself," she said. "But now that I have it, it's made me actually stronger. It's made me braver."

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