Sarcoidosis: uncommon, but serious -, South Georgia News, Weather, Sports

Sarcoidosis: uncommon, but serious

February 6, 2003

by Doctor Deanna Lites


A disease with no apparent cause, no cure, and the potential to affect thousands of Americans. It’s called sarcoidosis and unless you're a health care worker or had personal contact with the disease, you've probably never heard of it.


“Cardiac sarcoidosis is uncommon. It is recognized in only a couple of percent of cases. But it's obviously serious." Northwestern Memorial's Doctor Peter Sporn is an expert in sarcoidosis.


It's a mysterious inflammatory disease that's far more common in the lungs and skin.


Yet it's practically unknown among the general public.

"It’s what? Never heard of it?"


That's the reaction Doctor Nancy Sassower gets when she tells a patient they have sarcoidosis.


It's also the reaction that Andrea Wilson gave when she was first diagnosed by another doctor. "I think the scariest part was when a doctor said you know we don't know what to do with you and basically you have to get your affairs in order and be ready to go any minute."


Instead of giving up, Andrea found doctors who knew how to treat the disease. Now, seven years later, her only major symptom is fatigue. Andrea’s taking a number of medications.


Blood tests help tell if the treatments are working. Though few people know about sarcoidosis, it's not uncommon. About one in 3,000 Americans has some form of the disease. Fortunately, most of them recover on their own.


But in about one-third of cases the course is chronic and that can be ongoing inflammation of the lung, or other organs such as the skin or eye, or brain or heart.


In the lungs, first symptoms are a cough or wheeze, which can be mistaken for a cold. To diagnose it, doctors need a chest x-ray, and a biopsy.


But sarcoidosis is more difficult to pinpoint in other organs. When sarcoidosis invades the heart it can weaken the muscle, or more commonly short-circuit the heart's electrical impulses.


"For example irregular heart rhythms or arrhythmia can develop, and be life threatening," said Dr. Sassower. No one knows the cause of sarcoidosis yet, but there may be a genetic link.


That's one reason why Andrea and her husband have formed a foundation to help find a cure - before their daughter is old enough to be at risk. "Every time I look at her I think I've got to go on, I've got to push on. So I think if not in my lifetime, at least in her lifetime, we will have a cure."


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