The Power Of Patient-to-Patient Groups
Forbes - 06/03/2013
By Laurie Edwards, Next Avenue Contributor
When I received a diagnosis of primary ciliary dyskinesia, a rare genetic lung disease, 10 years ago, one of the first things I did was look it up on the internet. The disorder, known as PCD, is a rare or “orphan” disease, meaning it affects fewer than 200,000 patients in the United States. With only 400 appropriately identified PCD patients in the country, I certainly didn’t know anyone else with the condition. I was 23, I’d been seriously ill since birth, and I wanted to know what I could expect now that my symptoms finally had a label.