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.

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