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.
"Honestly, it just really sort of took my breath away," Wilson says. "It made me feel sick to my stomach."
Dr. David Moller, director of the Johns Hopkins University Sarcoidosis Clinic in Baltimore, says that while he has no details about Mac's medical condition, it is possible that the condition was linked to his death.
"A 50-year-old does not generally die from pneumonia," Moller says. "It is known that sarcoidosis can increase someone's risk for developing pneumonia."
This additional risk can linger, even when the signs of the condition are not apparent.
"Even if a patient is undergoing remission in sarcoidosis ... sarcoidosis-related inflammation can be associated with scarring fibrosis," Moller says. "With significant fibrosis, that can hinder the lungs' ability to fight an infection. But whether or not sarcoidosis was involved, I have no idea."
Another part of the problem is that doctors often use immunosuppressive drugs to treat sarcoidosis. While this approach helps control the inappropriate immune response, it also lowers the body's defenses against actual threats.
"It's a disease whose numbers are underestimated in this country," says Debbie Durrer, executive director of the Foundation for Sarcoidosis Research.
Indeed, Hopkins' Moller points out, the disease can be difficult to diagnose, as it can affect a range of organs and manifest itself in different ways.