Cystic Fibrosis Support Group

Hi, my name is Alyssa Hanlon and I am a student at Daemen College in Amherst, NY where I am studying Physical Therapy. I am currently taking a class on Navigating Rare Diseases being taught by a patient advocate for patients suffering with Acromegaly. As part of our class, our professor asked us to talk with patients online in a discussion group. I am trying to learn about your condition outside the textbook!

I would love to know any of your stories, the length of time to diagnosis, medical struggle, what you like and dislike about your medical care and maybe one thing you really wish your doctor did.

Thanks so much for your time!
Posted on 04/26/12, 01:49 pm