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Rare Diseases: Sufferers Turn to Web for Help

Americans With Rare Diseases Best at Finding Online Health Info, Support


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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