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Rare Diseases: Sufferers Turn to Web for Help

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Updated: 1/30/2012 11:21 am

Feb. 28, 2011 -- People who have rare diseases -- and their caretakers -- are the savviest seekers of online health information and support, a Pew survey finds.

Health information trails only email and search engines as the main reason people go online. But when using the web to share information and support with others, one group leads the pack: people with rare diseases and their caretakers.

The finding comes from a Pew Research Center survey by Susannah Fox, associate director of the Pew Internet & American Life Project. Fox analyzed data from a national telephone survey of 3,001 adults and from a survey of 2,156 Internet users invited to participate through patient organizations affiliated with the National Organization for Rare Disorders (NORD).

"Peer-to-peer health care is a national trend for the worried well, for people with acute illness, and for those living with chronic conditions, but the people living with rare disease take it to the next level," Fox tells WebMD. "They probably can't find a support group in their community, sometimes not even in their state. The Internet becomes a secret weapon for them."

"More than any other segment of our society, those people are tremendously helped by the Internet," NORD Communications Vice President Mary Dunkle tells WebMD.

Rare diseases are those that affect fewer than 200,000 Americans. Many are far less common than that. Yet taken together, they afflict about 30 million people in the U.S. and 250 million people worldwide.

Even rarer than any single rare disease is a specific treatment for that disease. The FDA has approved some 360 "orphan drugs" -- drugs subsidized with federal funds because the market for them is so small. But these drugs treat only about 200 of the 6,800 diseases known to the National Organization for Rare Disorders.

Doctors who specialize in rare diseases are few. What’s bridging the gap, Fox finds, is online information and support.

"People living with rare disease, their own or a loved one's, have honed their searching, learning, and sharing skills to a fine point," she writes. "What was once a solitary expedition for one person or one family, however, has become a collective pursuit taken on by bands of brothers- and sisters-in-arms who may never meet in person."

Doctors often worry that patients will self-diagnose -- or worse, self-medicate -- based on incomplete or inaccurate information found online. But Fox finds that patients with medical issues overwhelmingly turn first to a medical professional.

"Advice from peers is a supplement to what a doctor or nurse may have to say about a health situation that arises," she says.

When patients or caretakers go online, they check out what they've learned by connecting with other patients/caretakers via social media.

"People who are part of these online patient communities, whether dealing with rare or other diseases, have found a reputable community where reputable information is the norm," Fox says. "When bad information is posted, the community swarms it almost like it is a virus. They tell us the community swarms it and kills the not-well-founded advice."

Fox's poll did not ask patients and caretakers which web sites they found reputable.

"People did say they are very careful about the sources of material they go to," Fox says.

"We tell them to always look at the source of the information -- and if the source is not immediately apparent, to be mistrustful," Dunkle says. "But there is some wonderful information online. The NIH has some very good information. NORD provides information, and WebMD certainly has a lot of good information."

Patients' Online Behavior

The Pew survey found that:

  • 18% of Internet users have gone online to find others with similar health concerns.
  • 23% of Internet users with chronic health conditions look for peers online.
  • 32% of Internet users with uncommon chronic health conditions look for peers online.
  • 26% of people caring for a loved one look for peers online.
  • 77% of Internet users look for health information online.
  • 85% of Internet users go online for health information when having a health crisis.

Fox's survey of people with rare diseases confirms what NORD already knew: The emotional support of others going through the same experience is crucial for patients and caregivers.

"We hear stories all the time about people who cried the first time they met someone with their disease or their child's disease, Dunkle said. "This is very emotional, knowing that at last you've found a person knows what you are going through."

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