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Fighting a Mysterious Disease

Misdiagnosed and Misunderstood

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.

Linda Otto knows all too well the struggle to find a name for the mysterious symptoms she was experiencing and the fight to find answers when her doctors didn't have any.

"I was working on this documentary film with the actor Bob Saget when I got sick," Otto says. "He talked about how his sister was dying of this disease called scleroderma, and I kept saying to him, 'Bob, look at my hands. What is wrong with my hands?' " The day after the funeral of Bob's sister Gaye, Otto was diagnosed with scleroderma -- an autoimmune disorder that leads to hardening of the tissues in the skin and elsewhere in the body. It can be fatal when critical organs, such as the lungs, stiffen and are unable to function.

"I was terrified. I thought I was going to die," she says. "Nobody could tell me about the disease, what to expect, or how to treat it." Otto embarked on a cross-country trip in search of answers, personally visiting the country's leading researchers. "I quickly found they were more interested in using my case to illustrate their particular theory than they were in my case itself."

For Otto, the hardening appeared primarily in her hands -- a difficult symptom for anyone, especially a filmmaker and avid golfer. "My doctors told me that I would eventually lose the use of my hands when they became permanently clenched, that nothing could be done to stop it." Otto refused to accept that prognosis and looked into alternative and physical therapies instead. Today, she has full use of her hands -- something she is convinced would not have happened without the five years of daily stretching exercises she followed as a result of her own research.

"You have to believe in yourself and seek alternative answers," she says. "With these illnesses so much is unknown that you can't just accept whatever the first doctor tells you."

Get a Second, Third, and Fourth Opinion if Necessary

Ladd, Otto, Martin, and Rose all say a woman shouldn't give up if she suspects something is wrong and is told otherwise. Many women with autoimmune illnesses see multiple doctors over a period of months or years before getting a diagnosis. "You have to keep believing in yourself, even if everyone is saying it's all in your head," says Ladd. "Don't give up until you get a diagnosis."

Kellie Martin, now the official spokeswoman for AARDA, agrees. "Often the biggest obstacle that patients with autoimmune disease face is just getting a diagnosis," she says.

But even a diagnosis won't always lead to a happy ending: Not long after being diagnosed with lupus, Martin's sister Heather died of a lung infection that her weakened immune system couldn't fight off. Still, Martin believes that an earlier diagnosis might have been able to save her. "If a doctor dismisses symptoms or says they are stress-related, patients need to find another doctor, period," she says.

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