Meet Cullen!

CullenThis interview was conducted in spring 2011 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 Kent, Washington.

How old are you?

I am 11 years old.

When were you diagnosed?

I was diagnosed in 2008. I was 8 years old.

When did you first start having symptoms of PH?

I started having symptoms when I was 5 years old, but we didn’t know yet that I had pulmonary hypertension until years later. I was diagnosed with Long QT Syndrome when I was 7, and pulmonary hypertension a year after that.

What were your symptoms?

I was playing soccer and having a hard time catching my breath. I used to be very athletic, but I noticed I was having a hard time keeping up with the other kids. I would get chest pains and feel dizzy, and sometimes I couldn’t sleep at night because I couldn’t breathe.

What activities do you like to do?

I love to play video games, and I also really like to cook, read, and play basketball at school during lunch time.

Have you ever felt unable to do something because of PH?

Sports and swimming are the two things that I miss the most. I really miss playing soccer, and I can’t swim anymore because I have a central line.

How has your life changed since you were diagnosed with PH?

My classmates are really good about treating me the same, but I sometimes feel different and left out when I can’t join them when they’re playing sports. I have to carry a backpack with my FlolanTM pump in it 24 hours a day. I sleep with it and bathe with it, and I wish I didn’t need it. I also take lots and lots of pills every day and have a lot of doctor’s appointments.

What is a message you’d like to pass on to other kids with PH?

Don’t worry, you are going to have family and friends to help you with this. It is scary when you are first diagnosed, but as time goes on, you learn more about your disease and the doctors find ways to help you feel better. Soon, things will become a little less scary.

 

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NORD

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.