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.

"I've seen discussions get up to 1,500 comments because people are so excited to find others with the same rare disease," said McNaughton. "The discussions become a community, and sometimes they're not even discussing their medical condition anymore. They're updating each other about their lives and becoming friends."

At 38, Carrie Garlick was diagnosed with systemic scleroderma, a rare autoimmune disorder that causes skin and connective tissue to harden and tighten. The disease affects only about one in 1,800 to one in 6,500 Americans.

"Finding the website was absolutely amazing," said Garlick, now 39. "It has helped so many people who didn't know what to do or where to turn. They can reach out to someone in an entirely different place and know that they're not alone."

Garlick receives e-mail updates from the scleroderma discussion group, and reads through new posts every day.

"Checking the site has become part of my regular day," Garlick said. "There is always something there that I can learn from or a post where I can make a comment or suggestion."

For many, these sites are more than just a hub for friendship and chats; they are a place to learn about new research and alternative treatments for a specific disease.

Social Networking Makes a Difference for Rare Disease Sufferers

Matthew Holt, the co-founder of Health 2.0, a patient-centered, membership-based health organization that hopes to redesign the practice, delivery and experience of health care, sees these online communities as much more than just a virtual support group.

He believes it may be even more important that "people are working together to use these communities to record medical information about themselves and sharing it with others."

"I often see conversations like: 'This new study shows that these three drugs may have a positive impact on your illness and this doctor in Boston is doing a lot of research on this," he said. "You may not know him because you're in Santiago, but you should get to him or at least look into it.' I see this level of information going on all the time in these online communities."

Indeed, NORD now often seeks the power of the Internet to help patients find clinical trials, support groups and information about a specific diagnosis.

"We are a non-profit organization, so we never had a large PR budget, but the Internet and social media have leveled the playing field in terms of the awareness factor," said Mary Dunkle, vice president of communications at NORD.

Established in 1983, NORD began in the pre-Internet days.

"People used to send letters to NORD that said, 'Can you help me find anyone else who might have this same disease. I feel so alone,'" said Dunkle.

Back then, Dunkle said, it was much more difficult to help a patient find another person with the same rare disease. But the world of communication has changed dramatically. A person now can go onto NORD's Facebook page, post a question and expect a response in minutes.

A recent post on the NORD Facebook page read: "I thank whoever made the Internet and facebook cos although i don't want other people to suffer this horrible disease, i'm so glad i'm not alone. xx"

Staying Positive Despite a Rare Disease

The Facebook member was referring to Dercum's disease, a rare disorder caused by painful benign tumors made up of fatty tissue.

"I think if you talk to people through these sites and gain a perspective on life, it can be a life-changing positive thing," said Kendall Speer, 26, a special education teacher who suffers from Muckle-Wells syndrome, a rare autoimmune disease characterized by fevers, hives, hearing loss and swollen joints.

"You can see on those forums that we all have a similar perspective," said Speer, who was diagnosed with the disease in her early 20s.

"We learn to see the little things in life like birds chirping and blue sky," she said. "You see people who used to be the guy honking horn in traffic and he's changed, calmed down. We stay positive and look at all the beautiful things and see that life's worth living."

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