Patient Story


As told by his mother, Lori Welsh

My son was born 12 years ago with a diaphragmatic hernia. He survived several surgeries to repair his diaphragm, yet this left him with a very small left lung that has very little function. He has very high pressures and at age 3 was put on Viagra, tracleer and oxygen. His last heart cath revealed that his pressures weren't getting any worse, yet not any better either. His doctor is thinking about putting him on yet another drug, Tyvaso - in additon to the tracleer, revatio, digoxin and aspirin. I hate to see him struggle to breathe - I'm hopeful there will be a cure in his future.

- Lori Welsh, Mom to John, who wants to be a MLB player when he grows up! :)


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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.