Social Networks Make Rare Diseases Not so Hard to Find

Online communities become source of support for rare disease patients.

ByABC News
October 14, 2010, 5:35 PM

Oct. 15, 2010— -- 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, 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 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.