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Courageous Survivor: Putting a Face on Disease

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ABOUT THE AUTHOR

Michael Y. Park is a freelance journalist living in Brooklyn, N.Y.

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Every morning, has to , , and . She has to do it every day without fail—because it’s the only thing keeping her alive.

“My God, it hurts so much sometimes,” , age , said. “On some mornings I wonder if is testing me.”

, once a healthy and energetic young , who regularly and , was suddenly struck down one day at age while in . What she’d thought was a barely noticeable was in fact , spreading throughout her body and slowly destroying her , inch by inch. It’s called ’s Syndrome.

“It got so bad that I couldn’t even anymore,” said , who lives in . “But it was worse at night, when I frequently . Yeah, I dreaded the nights. Even now I can’t by myself anymore.”

’s Syndrome works like a by attacking the . That in turn causes the deterioration of the , which is vital to . Patients can suffer from , , or even . In percent of cases, death can occur within months. It’s most often contracted when people or visit areas like .

According to Dr. , a at , patients like can expect a lifetime of anguish—at best.

“The typical patient will have to completely change his or her lifestyle, making the treatment and recovery of the disease his or her primary goal in life,” Dr. said. “Other, less vital pursuits, such as , , or holding any sort of job whatsoever—even —will have to be put on hold until the patient reaches a point where he or she can handle the pain sufficiently, usually within years. This is definitely not a disease for beginners.”

But there’s hope for people have the illness, and for the many, many people who may contract it, like , Dr. says.

Research into the possibility of using to develop a chemical that blocks the condition has proven mildly promising. And an awareness program has been successful in educating healthy people that the best way to treat ’s Syndrome is to never get it. “I may be sick, but I’m not giving up,” outside her doctor’s office one frigid winter twilight as bleak and dying trees around her gave up their desiccated leaves to spiral downward in an inevitable journey to the cold, dead earth. “No, that’s not me. I’m a fighter.”

then tried to , but quickly had to stop as she was racked with a coughing fit that ended with her spitting up . “No,” she said weakly. “I’m going to fight this to the end.”

—Published January 31, 2007

Sunday, March 21, 2010