Model way to handle illness

Benefit: Karen Duffy has decided not to hide her chronic disease behind a pretty face. Instead, she's out raising money -- and awareness -- for research into sarcoidosis.

August 10, 1999|By Tamara Ikenberg | Tamara Ikenberg,SUN STAFF

What could possibly ruin a night out at the Emmys with George Clooney?

For Revlon model and former MTV VJ Karen Duffy, known to fans as "Duff," it was a crippling headache.

"I thought I had a hangover," says Duffy, 38, of that Fall 1995 evening. "It [the headache] just has never gone away."

It wasn't a hangover. It was the chronic disease sarcoidosis. Doctors do not know the cause of the disease, and there's no cure yet, according to Dr. David Moller, director of the Johns Hopkins University Sarcoidosis Clinic. It's a disease in which groups of inflammatory immune cells form nodules, known as granulomas, within organs. It's not fatal, but if left untreated and undiagnosed as many cases are, it can cause anything from skin lesions to severe lung illness.

Duffy was in Hunt Valley yesterday at a benefit golf tournament, the first fund-raiser for the Life and Breath Foundation, formed in December by Federal Hill resident Sean Hull. His late mother Ida E. Hull, also suffered from sarcoidosis. Hull, an investment broker in Chevy Chase, hopes to raise $50,000 to $100,000 to donate to the Hopkins clinic.

"I think it's a disease that's solvable within the next 10 to 15 years," Moller says. "It just needs more intensive research."

Moller says he sees about 1,000 sarcoidosis patients a year at the clinic. It's difficult to estimate how many people have sarcoidosis worldwide. Moller says the figure may be one in every 2,000 to 5,000 people. He adds that it tends to be more common among women and African-Americans.

"It hasn't gotten the public recognition it deserves," says Moller, noting that Hull's and Duffy's efforts should help.

After Duffy's night at the Emmys, it took 11 months for doctors at New York's Cornell University Medical Center to diagnose what was wrong. They found a lesion in Duffy's brain that extends part-way down her spinal cord. When it becomes inflamed, she loses feeling in her extremities. Sarcoidosis can cause different symptoms depending on which of any number of organs it affects, says Moller. When it's in the brain, it may be misdiagnosed as multiple sclerosis. And when it attacks the lungs, it leaves damaging scars.

After her first bout, Duffy remembers watching people at the hospital leaf through tabloids featuring herself, Clooney and tons of romance rumors. Yet no one connected the patient to the pictures.

"I was a bald-headed, steroid-bloated, critically ill woman," Duffy says.

Looking at her now, that's tough to believe.

Duffy is just as striking as she was in her Gen-X glam days. The brown-eyed beauty has thick dark hair and a lean, tan physique. Plus, she's still got those dimples.

When the disease first presented itself, Duffy was on the threshold of major career advancement. She was about to get her own show with Disney. Her movie career was taking off.

"I thought Revlon would sack me," says Duffy, who lives in New York's Greenwich Village with her husband, investment banker John Lambros, 34. Her agents and managers urged her to keep the disease a secret. But keeping it quiet was like "keeping a beach ball underwater," she says. She came clean, and her contract remained intact.

In early 1997, when Duffy got back on her feet, she wrote an article for Cosmopolitan, chronicling her experience, called "Spittin' In Death's Eye." She then began giving talks at hospitals and institutes throughout the country. Most recently, she's become affiliated with Organon, a foundation specializing in women's health care advocacy. It was through Organon that she hooked up with Life and Breath. After having such a close call, she felt a sense of responsibility.

"People think a disease is the end of their life," says Duffy, who is also a contributing editor at Conde Nast. "You have to find a style to deal with your illness."

And if anyone deals with it in style, it's Duffy. When she goes to the hospital for her frequent treatments, she decorates the room with scented candles and places a framed picture of Dr. Jack Kevorkian behind the bed.

And no frumpy hospital gowns either. She prefers heels and party dresses. "Gowns are made by sadistic hospital companies," she says.

Duffy is treated with steroids and morphine. Moller says the treatments can produce terrible side effects such as high blood pressure and bone thinning.

Life isn't exactly MTV-perfect for Duffy, but her former employers have recently sought her out to be a subject for a documentary.

Their pitch: She has what every woman wants: An amazing career, a hot husband, looks, style, brains. But she also has what every woman fears: A debilitating illness.

"It seems kind of cheesy," says Duffy, who just returned from Paris where she filmed a documentary on the Paris Review with legendary documentarian Albert Maysles.

She doesn't feel much of a connection with the music network anymore.

"It was such a silly job," Duffy says. "A monkey could do it."

Pub Date: 8/10/99

Baltimore Sun Articles
|
|
|
Please note the green-lined linked article text has been applied commercially without any involvement from our newsroom editors, reporters or any other editorial staff.