Social Networks Make Rare Diseases Not so Hard to Find


"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.

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