Rare medical conditions create unexpected and scary challenges. Treatment best-practices are gray areas—as are long-term and short-term prognoses. When patients are sick with an uncommon illness, access to information is an incredibly vital resource, and it’s crucial that patients find prompt answers to questions, concerns, and fears.

For patients facing a situation where science and medicine meet art and creativity, access to information is imperative. While medical journals, specialists and treatment centers can educate people to the best extent possible, they may not provide enough.

When you’re sick, you need community support. You’ll want to know how to contextualize your illness within the rest of your life. You’ll want to be able to assess the range of experiences to understand best and worst care scenarios. You’ll want to know whether you’re missing information—whether you’re getting the best medical care possible—and whether there exist new and experimental treatments.

In the healthcare space, social networks facilitate access to information, and a recent survey from the Pew Internet Project and California Healthcare Foundation reports that many of these networks exist online. When you have a rare illness, others in your situation are few and far between, but online, it becomes possible to meet with people—across the country and on the other side of world. According to the survey, people with rare and chronic conditions are turning to social media for community support.

As NPR reports, social networks provide emotional support beyond what’s available at the doctor’s office and even at home. One woman shares her story:

“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."

The Pew Center survey found that among people living with chronic conditions, one in four Internet users say that they go online to find others with similar health problems. Only 15 percent of Internet users without chronic conditions have demonstrated similar behavior. Even still, health professionals, friends, and family remain the primary sources for support.

People with rare conditions aren’t dismissing their doctors. Instead, they are using social media to supplement their clinic and hospital experiences. Social networks provide emotional support and access to information. Online, these opportunities are available –without limits—to patients of rare illnesses.

P2P networks may provide a way for clinics, hospitals, and doctors to leverage technology in a way that advances standard of care.

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