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Fighting a Mysterious Disease

Misdiagnosed and Misunderstood
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Misunderstood and Misdiagnosed continued...

Perhaps then doctors will have more luck determining the underlying cause of these diseases -- that is, what triggers the immune system to react against the body in the first place. In one-third of the cases, there is a family history of autoimmune disorders, but that means there isn't a family history in the other cases, says autoimmune researcher Noel R. Rose, MD, professor of pathology and immunology at Johns Hopkins University in Baltimore. "We are still trying to find the trigger that makes these illnesses appear," he says. "Until we know the cause, we can't cure them. We can only treat their symptoms."

There are many theories on what the triggers might be but so far, no answers. Some suspect genetics plays a role. Others point to chemicals and contamination in the environment. Still others believe some sort of viral infection is at the root of the problem. Or perhaps it's a combination of all of these factors, an underlying genetic susceptibility that lies dormant until a trigger -- environmental or viral -- activates the disease. Researchers like Rose hope to find some answers soon. "The research of the past decade is adding up. Combined with the new research into the genetic code, we are very hopeful that there will be a breakthrough within the next 10 years," he says.

The Masquerading Illnesses

One reason researchers have difficulty finding answers is that not every autoimmune illness progresses as quickly as Heather's did. Many creep into a woman's life, settling in so gradually that the changes are attributed to stress or aging.

"Many times it is a visiting friend or relative, someone who doesn't see the person on a daily basis, who notices the profound changes the illness has caused," says Rose.

The symptoms are often mistakenly attributed to the hectic pace of a woman's life in her 20s and 30s or as premenopausal symptoms if she is in her 40s or 50s, says Rose. She may be told she just needs to slow down or get more rest, but relief still doesn't come.

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