When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their children – or maybe they just told the best stories.

When I read “The Boy With a Thorn in His Joints,” by Susannah Meadows on Sunday evening, I was transported back to the maze of rare disease, where a chance conversation can connect you with the right clinician, the right treatment, or even just the comfort of not being alone. Meadows writes about the shock of her young son’s arthritis.diagnosis and then, later, the shock of recognition when she talks with someone whose child has the same condition. Continue reading →