Meet Ryan!

Ryan with younger sister KarynRyan with younger sister Karyn

This interview was conducted in winter 2010 by Mira Kruger, the granddaughter of a PH patient and a volunteer writer for PHA’s Pathlight newsletter.

Where do you live?
I live in Chester Springs, Pennsylvania.

How old are you?
I’m twelve years old.

When were you diagnosed?
I was diagnosed June 29, 2009, when I had a heart catheterization to check on things with my heart.

When did you first start having symptoms of PH?
Luckily, I’ve never experienced any symptoms of PH. I ended up getting PH as a result of my congenital heart disease.

When were you diagnosed with the congenital heart disease?
I was diagnosed at birth with Tetralogy of Fallot with Pulmonary Atresia.

What activities do you do?
I like to do a lot of things. I ride my bike, wave board, play baseball and basketball, and play video games.

Have you ever felt unable to do things because of having PH?
I don’t really feel like I’ve missed out on anything or been restricted from doing anything because of PH. My heart defect keeps me from doing contact sports and tons of sit ups and pushups, but that’s okay with me. I have a lot of other activities that I can do, so I’m not disappointed with the things I can’t do.

How has your life changed since your PH diagnosis?
Certain things have changed since I’ve been diagnosed with PH. I have to take more medicine and have to go to more doctors’ appointments with more tests. I have a great doctor at the Children’s Hospital of Philadelphia, Dr. Hanna, and a great nurse practitioner, Steve Walker, who really take the time to explain things to me and are doing their best to make sure I can keep on doing everything I love to do.

What is a message you’d like to pass on to other kids with PH?
My message to other kids with PH would be to not let PH take over your life. It can be a scary thing to think about but so is a really hard math test or tryouts for a sports team. It’s not the end of the world. I know that if I continue to go to my doctor’s appointments and take my medicine, then I can look forward to having a long, happy life.

 

 

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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.