I’m Aware That I’m Rare: Shannon O’Donnell (251)

The phaware® interview

Shannon O’Donnell was diagnosed with pulmonary hypertension at age 6. Shannon recorded this interview on the day of her college graduation. She details her PH journey on the eve of her 18 year PH diagnosis anniversary.

My name is Shannon O’Donnell. I have been a PH patient for 18 years, and I am from Boston, Mass.

I was diagnosed at six years old. It’ll be 18 years on May 31st. I don’t remember much, but there was a lot of restrictions. I couldn’t do a lot that my friends were doing, what my cousins were doing. I kind of grew up in a bubble. We didn’t know how long my parents would have with me, so I kind of grew up in a bubble with very few friends and very close to family.

My parents tried to give me a normal childhood, but back in the early 2000s, doctors didn’t know how long kids would live with pulmonary hypertension, and there wasn’t drugs approved for kids in the early 2000s. Now here, 18 years later, I am alive and graduating college tomorrow.