sarcoidosis and pneumonia :: Article CreatorStealthy Illness Gaining Attention
Andrea Wilson felt sick to her stomach Saturday when she heard comedian Bernie Mac had died in a Chicago hospital. It was her private fear — the fear of sudden death — suddenly splashed across the news. Like Mac, Wilson has sarcoidosis, a mysterious and sometimes devastating immune system disorder that causes cells to cluster […]
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Originally Published: August 12, 2008 at 1:00 AM CDT
Bernie Mac's Passing Shows The Dangers Of Sarcoidosis
CHICAGO — Andrea Wilson felt sick to her stomach when she heard comedian Bernie Mac had died in a Chicago hospital.
It was her private fear — the fear of sudden death — 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," says Wilson, 43, who lives in Chicago.
When it becomes active inside her heart, she gets palpitations and feels like she's going to faint or have a heart attack. Wilson has had two heart surgeries related to sarcoidosis-inspired damage. 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.
'It felt like I was dying'
Faith Lundy of Houston says 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 recalls. "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 says.
Like many people with sarcoidosis, the news of Mac's death hit her hard. "It scared me real deep," she says. "I was like, oh my goodness, could that happen to me?"
A 'lucky' example
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 says.
Harris is lucky in a way; her disease is relatively stable and confined only 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 this disease, patients say.
And then, there's the loneliness of "having this disease with the funny name that no one knows about. You feel very isolated," says Harris, who this year started a sarcoidosis support group in Lake County, Ill.
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, says Gwen Mitchell, 54, who has lived with sarcoidosis for 18 years.
Back 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 says.
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 says: "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."
Originally Published: September 2, 2008 at 4:00 AM EDT
Bernie Mac's Death Draws Attention To Mysterious Sarcoidosis
The death of actor and comedian Bernie Mac on Saturday put a spotlight on a mysterious inflammatory disease that Mac reportedly battled for years, and which strikes black Americans particularly hard.
Sarcoidosis is a chronic disease that can attack any organ, but most often shows up as clusters of inflammatory cells in the lungs. It may produce no symptoms, or cause asthma-like shortness of breath and chest pain.
Mac died at age 50 of pneumonia at a Chicago hospital. His publicist said the pneumonia was unrelated to Mac's sarcoidosis, which went into remission in 2005, Associated Press reported. But doctors speculated sarcoidosis might have played a role because it would be unusual for pneumonia alone to kill a 50-year-old.
Doctors don't know what triggers sarcoidosis or why blacks -- especially black women -- and Scandinavians have the highest rates. Though the disease is rarely fatal, black Americans die 16 times more often than whites do from it, according to the American Lung Association.
The Cuyahoga County coroner ruled in May that black R&B singer Sean Levert, 39, died of complications of sarcoidosis while in jail for failing to pay child support.
Dr. Edgar Jackson, a chief adviser at University Hospitals Case Medical Center who has devoted a long career to minority health issues, said sarcoidosis is often suspected when adults develop breathing difficulty for the first time. The lung ailment typically strikes between ages 20 and 40. "It can manifest itself on any part of the body," Jackson said. "It can present as a skin issue. It can present as a heart issue. Usually, it shows up as a lung issue."
Steroids and immune-suppressing drugs are used to treat the disease, but there is no cure.
In some cases, the inflammation and the sandlike cell formations -- called granulomas -- recede naturally.
UH lung specialist Dr. James Finigan said many patients with the disease don't have symptoms at all. "You can have sarcoidosis and not even know it," he said.
Doctors at the Cleveland Clinic, which began a sarcoidosis center of excellence a few years ago, are studying risk factors that may explain why some patients become extremely ill and others suffer no ill effects, said Dr. Jeff Chapman.
"It's highly variable," Chapman said. "Most people with a diagnosis of sarcoidosis do well and a few do not."
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