Net helps victims of rare diseases
By Rachel Stone
San Antonio Express-News

Doctors told Dawn Decker she had allergies. They also attributed her problems to irritable bowel
syndrome, ulcers, colitis and stress.  Some said it was all in her head.

But after the string of diagnoses, the 40-year-old mother of three was still sick. She had severe
diarrhea, dehydration, stomach cramps, as well as joint and muscle pain she compared to being
"hit head to toe with a baseball bat."

More than four frustrating years passed before allergists suggested a blood test for a type of cancer
called carcinoid. In July 2000, she was told she had the rare condition.

In the quiet of her pale-yellow living room, feet curled beneath her in an overstuffed sofa, Decker
recently recalled hearing the diagnosis.

"The first reaction was, 'Oh my God, I'm going to die,"' she said.

"For years I'd had symptoms. You're just bounced back and forth," she said. "So, in some ways,
the diagnosis was a relief."

Carcinoid, which only affects about 50,000 people in the United States, has no cure. (Wendy's
founder Dave Thomas died from the disease in January.)  Radiation doesn't work and chemotherapy
is effective only about one-third of the time.

A decade ago, patients such as Decker with rare diseases might have stayed in the dark with little
or no support from other sufferers. But upon her diagnosis, she looked to the Internet for more
information, and found it.

She's not alone. Patients are turning to the Internet in droves to find information and to set up
online support networks. For those with rare conditions, the online community - in terms of advice
and resources shared - can be invaluable.

Jannine Cody of San Antonio started the Chromosome 18 Registry in 1990 after her daughter was
diagnosed with a rare genetic disorder. She went online with it sometime in 1995.

"You have to become your own resource in a lot of ways," she said, in dealing with doctors who
have never heard of the chromosomal abnormality, which affects about one in 40,000 people.

When Decker went online after her diagnosis, she found the National Carcinoid Foundation*
site and the personal site of Susan Anderson**, a carcinoid patient in Tempe, Ariz.

Anderson's site chronicles her eight-year search for an accurate diagnosis and her battles with
carcinoid and breast cancer.

"What I tried to do is put up a page with links and information that I wished would have been in one
place when I was diagnosed in 1995," Anderson said. "We're glad when people find it so they
can say, 'Oh, I'm not alone."'

Decker has never met another carcinoid patient in person, but she is trying to change that.

Recently, she contacted 24 carcinoid patients in Texas and established the South Texas Carcinoid
Fighters. So far, the group meets only in cyberspace, logging on at a set time to chat and e-mail
one another.  "Eventually, we're trying to set up a face-to-face meeting," she said.

Cody, who returned to school and received her doctorate in genetics, is now an associate professor
of pediatrics at the University of Texas Health Science Center.  Over the past seven years, she has
shared her experience with people allover the world, particularly through the Internet and the
group's Web site.

The goal of the Chromosome 18 Registry, said executive director Claudia Traa, is for people
to return from a diagnosis, type in "chromosome 18" on their computers, and find information,
advice and support.

The nonprofit group also strives for doctors to refer their patients to the site upon diagnosis.

Decker has become the Texas contact for newly diagnosed carcinoid patients, and said
reaching out to others has helped her own struggle.  "That's the hardest part of having a rare
cancer -finding support, or the lack of support," she said. "In a way, it's been a very positive
emotional experience because I get to help others and that helps take your mind off yourself."

  * Carcinoid Cancer Foundation, Inc.
** Susan Anderson’s Carcinoid Homepage

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