Duffy’s a true ‘Model Patient’
Book details her incurable zest for life in coping with sarcoidosis
When the pain was so intense that a gust of wind would made her neck throb, model/actress Karen Duffy looked for a book to help her deal with her rare illness.
She never found such a book, so three years ago the former MTV VJ known as Duff began writing about her own ordeal with sarcoidosis, an incurable disease that can attack almost any body organ.
Model Patient: My Life As An Incurable Wise-Ass (HarperCollins, $24), released Tuesday, is a humorous memoir about her battle with the disease.
”My book is really about developing a style for your illness so you don’t fall out of love with yourself when all these creepy things are happening to your body,” Duffy says from the New York City home she shares with her husband, John Lambros.
The Revlon model writes about coping with long hospital stays, encountering charlatans promoting alternative cures, and the ”marriage of doctor and patient.”
”I kind of have to look at my illness as a business and treat it as having a full-time job,” Duffy says. ”I think everyone dealing with a health care crisis really needs to investigate their relationship with their doctors.”
Sarcoidosis is not a well-known or easily understood disease, says Kevin Brown, director of the Clinical Interstitial Lung Disease Program at the National Jewish Medical and Research Center in Denver. It is hard to tell if more people are acquiring this disease, he says.
”There’s certainly an increased interest in sarcoidosis,” he says. ”People are paying more attention, and doctors are trying to make sure people are properly diagnosed.”
Physicians do not know exactly how many people have sarcoidosis because many cases go undetected, but they estimate there are 10 to 40 cases per every 100,000 people in the USA. In many cases, the symptoms of sarcoidosis don’t appear. But with those who have symptoms, they vary greatly and include shortness of breath, persistent cough, skin rashes, inflammation of the eyes, weight loss, fatigue, fever and an overall feeling of ill health. The symptoms can disappear within a few years in many cases.
As the disease progresses, microscopic lumps called granulomas appear in the affected tissues, which can include the lungs, lymph nodes, heart, liver and kidneys.
Duffy started her career as a recreational therapist in a New York City nursing home. It wasn’t until age 27 that she began modeling and appearing in television commercials. She became an MTV VJ in 1991 and has acted in several movies, including Dumb and Dumber (1994) and Blank Check (1994).
Although she had to cut back her acting and modeling career because of sarcoidosis, Duffy continues to work. She is a correspondent for Michael Moore’s The Awful Truth and tours the country to speak about women’s health issues.
Duffy, 39, has sarcoidosis of the central nervous system, one of the most severe forms. Her case ”is a very unusual manifestation of sarcoidosis,” Brown says, because less than 10% of cases involve the central nervous system.
After doctors discovered a lesion in Duffy’s spinal column and brain, it took them nearly a year to diagnosis her with sarcoidosis. The disease is often difficult to spot because its symptoms are similar to other illnesses.
Duffy encountered periods of paralysis and excruciating pain. In the area of her spinal cord lesion, the coating that normally protects nerves was scraped away by the inflamed cells of the lesion.
”It’s kind of like being stung by wasps and jellyfish and throwing kerosene on that and then having someone slap you,” she says.
In some cases, doctors wait to see what path the disease takes before recommending treatment. For Duffy, doctors prescribed more than four years of methotrexate, a chemotherapy treatment.
She also took steroids and continues a daily dose of morphine. Now, her spinal cord lesion is gone, but she still has sarcoidosis in her lungs, eyes and intestine.
”The past five years I’ve changed in ways I never would have conceived,” Duffy says. ”I feel like sarcoidosis has changed my life, but I don’t have any regrets.
”(The late Massachusetts senator) Paul Tsongas said if he had to choose between being sick (non-Hodgkin’s lymphoma) or being perfectly healthy, he would pick the life he had. I definitely feel the same way about sarcoidosis.”
TEXT OF INFO BOX BEGINS HERE
Rare disease often goes undiagnosed
* Sarcoidosis causes inflammation of various tissues.
* The cause of the disease is unknown, but doctors believe it involves an adverse reaction by the immune system.
* As sarcoidosis progresses, microscopic lumps called granulomas appear in affected tissues. About 90% of cases involve the lungs, but sarcoidosis can appear in almost any organ.
* Symptoms can include shortness of breath, persistent cough, skin rashes, fatigue, night sweats and fever.
* The disease occurs in all races, but African-Americans and people of Scandinavian, German, Irish or Puerto Rican descent are at greater risk.
* People ages 20 to 40 are mostly affected.
* Many cases go undetected; scientists estimate there are between 10 to 40 cases per 100,000 people in the USA.
For more information or to locate support groups:
* Sarcoidosis Research Institute, 901-766-6951, www .sarcoidosisresearch.org
* Sarcoidosis Networking, 253-891-6886, www.worldsarcsociety.com/snnewsletter .htm.