Mac's Death Raises Sarcoidosis Awareness

Aug. 17, 2008— -- For Andrea Wilson of Chicago, Valentine's Day 1994 marked the end of an eight-year search to identify the mystery disease that had turned her life into a living hell -- a daily routine of pain, fatigue and seemingly unconnected symptoms.

"I'd been consistently misdiagnosed for eight years," she recalls. "I was told it was multiple sclerosis. I was told it was a brain tumor. I was told it was just stress -- that I was freaking out, that it was nothing."

But it was only when a chest X-ray revealed massive scarring in her lungs that doctors determined that she suffered from sarcoidosis -- a condition in which the body's immune system triggers uncontrolled inflammation, wreaking havoc on internal organs.

Wilson, like most others with sarcoidosis, experienced particularly severe inflammation in her lungs. But even then, medical professionals hesitated to believe Wilson could have suffered the degree of damage the X-ray showed.

"I was sitting next to an old man in the doctor's waiting room," Wilson says. "The radiologist came out, looked at me and looked at the other guy, and said, 'I've mixed up these scans.'

"He thought my scans looked like an 80-year-old's scans."

Since her diagnosis, Wilson, now 43, has been waging a battle on two fronts. There is her personal struggle to control her disease, for which there is no cure. And there is the larger effort to increase awareness of the illness. In 2000, she and her husband established the Foundation for Sarcoidosis Research to that end.

But the disease has perhaps gotten the most attention from the untimely death of actor-comedian Bernie Mac last week. Mac battled the illness, which had plagued him with lung problems, for 25 years before he died Aug. 9, at the age of 50.

Mac's publicist has said it was pneumonia, not sarcoidosis, that led to Mac's death. But those with sarcoidosis have a known predisposition to pneumonia. And the loss resonated among those in the sarcoidosis community.