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.