Finding health information can be hard if you have a rare disease. Those patients often have to become experts themselves. Social media like Facebook make it easier for people with rare disorders to find each other and share that expertise. That’s helping patients and medical research.It can be very difficult for researchers to find enough people with a rare disease to study it. The Web is making that much easier.”We say things to each other we can’t say to others,” said one woman who responded to a survey on rare diseases and the Web by the Pew Internet Project.Carmen Iglesias was at home in St. Louis a week ago Friday when she got the word that a young woman in Paterson, N.J., was in trouble and needed Carmen’s help. Karla Reategui, 30, and the mother of two children, had been hospitalized with a collapsed lung.Reategui and Iglesias have two things in common: They both speak Spanish and they’re both patients who have been diagnosed with a disease called LAM, or lymphangioleiomyomatosis. It’s rare, affecting just five in every million people.
Read more of the story at: http://www.npr.org/2011/04/04/135106113/patients-with-rare-diseases-connect-online
