Meet Eric and Isaac!

Eric and IsaacBrothers Isaac and Eric 

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

Where do you live?
Eric & Isaac: We live in Georgia.

How old are you?
Isaac: I turned 14 on May 26.
Eric: I am 9, but I will be 10 on September 22.

When were you diagnosed?
Isaac: I was actually diagnosed on my mom’s birthday, August 12, 2005.
Eric: I was diagnosed on January 2, 2009.

When did you first start having PH symptoms?
Isaac: When I was around 2 years old.
Eric: A long time ago, when I was around 5 years old.

What were your symptoms?
Isaac: I would get tired easily, and I was short of breath and dizzy. I had chest pains, and I passed out multiple times.
Eric: My chest would hurt when I played too hard, and it would be hard to breathe. Sometimes it felt like I couldn’t get enough breath and I would get dizzy. I almost passed out twice.

What activities do you like to do?
Isaac: I like playing football, and I am hoping to get to play next school year, but my mom doesn’t really want me to.
Eric: I love to play video games.

How has your life changed since your PH diagnosis?
Isaac: Now I am always at the doctor’s office for something, and my mom is always asking me questions about how I’m feeling.
Eric: I have to go to the doctor’s a lot now, and I have to get blood work done every month, which I hate! I also sometimes get special treatment from the teachers at my school, and when I’m not feeling well, my mom will also give me special attention.

What is it like having a brother that also has PH?
Isaac: It can be kind of scary because I know how PH makes me feel, and I don’t want anyone else to have to feel that way. And now my sister might also have PH. We have to wait for the heart catheterization to confirm.
Eric: It’s okay. It wasn’t as scary for me when I got diagnosed because we already knew a lot about PH from Isaac.

What message would you like to pass on to other kids who have PH?
Isaac: There are people out there who know how you feel. It is not a death sentence, and with medicine you can feel better and live a pretty normal life.
Eric: You are not alone, and you can still have fun, especially if you like video games.

 

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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.