I didn't get a chance to post this before conference. The American Thoracic Society asked me to write a short, first-person article for their Public Advisory Roundtable newsletter. I wrote it about my experience being diagnosed with pulmonary fibrosis (however mild it may be) and being in the Pirfenidone trial. The final version is in a PDF, so I can't post it here - but you can go and read it at: http://www.thoracic.org/sections/about-ats/par/newsletter-and-archive/pages/march-2008-1-5.pdfIt's my hope that this will be just another way to get the words Hermansky-Pudlak Syndrome in front of doctors most likely to see a case.
Read the complete post at http://feeds.feedburner.com/~r/LivingOnTheFrontlines/~3/262113885/american-thoracic-society-spotlight-on.html