Mac's death draws attention to sarcoidosis

Actor was diagnosed with little-known immune disorder

August 14, 2008|By Judith Graham | Judith Graham,CHICAGO TRIBUNE

Andrea Wilson felt sick to her stomach when she heard comedian Bernie Mac had died Saturday in a Chicago hospital.

Her private fear - the fear of sudden death - was suddenly splashed across the news.

Like Mac, Wilson has sarcoidosis, a mysterious and sometimes devastating immune system disorder that causes cells to cluster and can damage organs throughout the body.

Last year, the disease jumped to her brain and started causing strokelike symptoms - vision changes, numbness in her left side, tingling in her face and mouth - as well as extreme pain. When sarcoidosis flares up in her skin, she gets lesions on her face, knees and legs, and lumps "like cauliflower growing out of your body," said Wilson, 43, who lives in Chicago.

When it becomes active inside her heart, she gets palpitations and feels as if she's going to faint or have a heart attack. Wilson has had two exploratory heart surgeries related to sarcoidosis. The disease has also made a home in her lungs, causing its signature symptoms: shortness of breath, wheezing and difficulty breathing.

There is no cure for sarcoidosis, an affliction that hits adults younger than 40 and disproportionately affects African-Americans, especially women. Sometimes, the illness is mild and goes into remission, but sometimes it is severe and unremitting, causing progressive damage to multiple organs. Often misdiagnosed, sarcoidosis remains a little-known disorder, even in the medical community.

Bernie Mac's publicist has said the comedian's illness was in remission and wasn't related to the pneumonia that killed him at age 50. Still, pneumonia is a frequent complication of sarcoidosis, and the medications people take to control the condition make them vulnerable to infections.

Faith Lundy of Houston said she was diagnosed with pneumonia twice last year before doctors performed a chest X-ray in December and discovered evidence of sarcoidosis.

"It felt like I was dying," she said. "I was running a fever of 104 degrees, and it was hard to breathe. I was weak, and I couldn't sweat it off."

In May, Lundy, 41, collapsed at her job at Houston's Public Works Department during a flare-up of the disease. Her eyes are so dry she needs to put in drops daily; blindness is a potential complication. Lundy's chest aches, and climbing stairs takes all the wind out of her.

"It's hard because a lot of people don't understand what I'm going through these days. Nobody has heard of sarcoidosis. Nobody knows anything about it," Lundy said.

Like many people with sarcoidosis, the news of Mac's death hit her hard. "It scared me real deep," she said. "I was like, oh, my goodness, could that happen to me?"

In Zion, Ill., Brenda Harris knows a lot about how vulnerable sarcoidosis patients are, physically and emotionally.

Since being diagnosed in April 1989, Harris has had four bouts of pneumonia and six hospitalizations. "The medications you take suppress your immune system, and then you get staph infections, fungal infections and bacterial infections," she said.

Harris is lucky in a way; her disease is relatively stable and confined to her lungs. But there, it has wreaked significant damage, and the upper right lobe of her lung has been removed.

Emotionally, the uncertainty associated with sarcoidosis - never knowing when you're going to have a flare-up or how serious it will be - is one of the hardest parts of dealing with the disease, patients say.

Then, there's the loneliness of "having this disease with the funny name that no one knows about. You feel very isolated," said Harris, who this year started a sarcoidosis support group.

One day, you might be racing around the house, and the next day you might not be able to even get out of bed. That's how fickle this illness can be, said Gwen Mitchell, 54, who's lived with sarcoidosis for 18 years.

In 1990, before she got the diagnosis, doctors told her for six months that she had walking pneumonia. "I couldn't talk, I'd be coughing so hard, and it'd go on for 15 or 20 minutes. They kept giving me stuff, and none of it would help," Mitchell said.

After collapsing on her way home from work, her husband's physician suggested she be tested for sarcoidosis, and doctors confirmed the diagnosis. Mitchell has had pneumonia twice since then and tends to be hospitalized multiple times a year with complications.

As for Mac's death, Mitchell said: "I'm sorry to see him gone, but he's bringing a lot of awareness of sarcoidosis to the forefront, and that's a good thing."

Judith Graham writes for the Chicago Tribune.

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