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Friday, November 26, 2021

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Fighting a Mysterious Disease

Aug. 22, 2001 — Two years ago, actress Kellie Martin’s 19-year-old sister Heather suddenly began to suffer from autoimmune disorders, according to Virginia Ladd, president and founder of the American Autoimmune Related Diseases Association Inc., or AARDA. Because of the threat these illnesses pose to women’s health worldwide, the AARDA is currently working with both the United Nations Commission on the Status of Women and the World Health Organization to have autoimmune disorders declared a major 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 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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