Social Networks Make Rare Diseases Not so Hard to Find

Video: Families of rare diseases testify before Congress.
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It was the middle of winter in 2009 when Margie Walsh doubled over in pain. Her husband whisked her away to the emergency room, and so began the seemingly endless process of CAT scans and PET scans, X-rays and blood work.

After four days in the hospital, she received the news: Walsh was diagnosed with primary peritoneal cancer, or PPC, a disease so rare that most major organizations do not have statistics on it.

The 55-year-old grandmother of eight from Chicago and her family began researching peritoneal cancer on the Internet for treatments and information. They came upon Inspire.com, a social networking website that connects people for the sake of health and wellness support.

Because Walsh's cancer is so rare, the chances of meeting someone on the street with the same cancer would have been infinitesimal -- but on the website, she found someone with her condition in a few days time.

"I had the love of family and friends, but I felt like I needed to connect with other women going through the same thing," she said.

PPC is a cancer that affects the lining of the abdomen, intestines, liver and stomach.

Once Walsh was diagnosed, doctors immediately operated on her, removing her ovaries, appendix, omentum and a foot of her colon.

Was she sad?

"No. I felt like I was going to fight like hell," said Walsh, who lost her mother and sister to cancer. "Of course there were tears, but I knew I was going to take this. There was never a moment where 'woe is me.'"

At first, she was skeptical of Inspire.com. Walsh didn't consider herself computer savvy. She had never joined a social network, her nine-year-old granddaughter taught her how to upload pictures to the computer and she only e-mailed once in a while.

"I'm not from the generation that has an entire conversation through e-mail," said Walsh. "This was all new to me, and I didn't know why these social networks were such a big deal."

But she joined despite her doubts, and she found her match.

Internet Helps Those With Rare Diseases Make Connections

Shortly after signing up on Inspire.com, Walsh found a member from Seattle who also had been diagnosed with stage 3 primary peritoneal cancer. The two women began to send messages back and forth about their diagnoses and treatments. Soon, it felt natural to talk to her as a friend.

"When I tell her I'm having a bad day, or I'm worried, or not feeling so great, I'll get a message back like, 'Hang in there, sister,' or, 'We gotta fight this thing, girlfriend,'" Walsh said. "It's wonderful for somebody like me to communicate with people across the country and world to discuss our cancer. We're all in this together."

The two women never have met face-to-face, but Walsh confides in her the same way, if not more, than she would a long-time friend.

According to the National Organization for Rare Disorders (NORD), a rare disease is one that affects fewer than 200,000 Americans at any one time. There are currently between 6,000 to 7,000 rare diseases that, together, affect from 25 to 30 million Americans.

With more than 150,000 members, Inspire.com attracts people all over the globe who have been diagnosed with a variety of illnesses. For people who suffer from rare diseases, the site is a particularly life-changing discovery.

As vice president of community at Inspire.com, Beth McNaughton sees first-hand the benefits of the website.

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