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Website Helps Patients Solve Medical Mysteries

By Kate Merrill, WBZ-TV
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CBS Boston (con't)

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NEWBURYPORT (CBS) – Only a few years ago dancing, art, and music came easy to Diana Cleaveland. Now the 51-year-old Newburyport mom struggles to sit up. “It’s really, really horrific,” says Diana as she describes the excruciating pain in her neck and back. Diana has been diagnosed with Ehlers-Danlos Syndrome. It’s a complicated genetic condition that weakens connective tissue leaving the patient in constant pain. But, Diana is convinced something else is wrong. “I’ve been diagnosed with contradictory things depending on which doctor you talk to.” Desperate for answers, Diana posted her case on the new website CrowdMed.com.

“We’ve had some pretty dramatic success stories. In some cases we’ve solved a case in just a few weeks that had stumped doctors for years,” boasts Jared Heyman the founder and CEO of CrowdMed. Anyone can submit a medical mystery on CrowdMed and anyone can sign up to be a medical detective. Those detectives then collaborate on the best possible diagnosis. “It’s much more efficient and much more cost effective than having a patient bounce from specialist to specialist. Which is typically how it’s done in the traditional medical system,” says Heyman.

Patients can even offer rewards to the detectives who get it right.

Beth Israel Deaconess Medical Center doctor urges caution before logging on, “You could get some scary information. You could get some useful information.” He recommends talking to your doctor before posting your case online. “I would be really skeptical that it would get you an answer that was correct quicker.”

The detectives on Diana’s case mostly confirmed the Ehlers-Danlos diagnosis. But they did give her at least one more condition to investigate with the help of her doctor. Diana remains determined to find as many answers about her own health as possible, in case her daughter goes down the same road, “I told her, I said you know something might happen to me if it does i want to have a path for you…. and as many answers as I can possibly provide for you.” And Diana believes the crowd will lead the way.

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