Rare diseases are just that: Rare. About 25 million people across the United States are struggling to cope with a rare disease that affects no more than a couple hundred thousand people. Looking for others in similar situations to trade health information with, these people often turn to the Internet, where, over time, they have become power users.
But the people dealing with a rare disease were far more likely to have honed their searching, learning, and networking skills to Olympian levels. The majority of them are connected to peers online. "We can say things to each other we can't say to others," one woman living with a blood disorder wrote in the survey. "We joke about doctors and death. We cry when we need to. Together we are better informed."
That's not to say that people are dissing doctors. Almost three-quarters of adults say they turn to doctors and other health professionals for information. Some 54 percent say they ask friends and family for advice.
But clearly the Web has something to offer people in need of medical information beyond mere data. "People want emotional support from their peers," says Susannah Fox, associate director of the Pew Internet and American Life Project, and author of the survey, which surveyed 3,001 adults in the general population and 2,156 members of the National Organization for Rare Disorders. "The rare disease communities show that people are ready and willing to share with each other so that other people can benefit from their experiences," she tells Shots.
Read the full story at NPR.
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