Meet Josiah!

JosiahThis interview was conducted in Fall 2012 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 Grass Valley, Calif.

How old are you?

I am 14 years old.

When were you diagnosed?

My mom says I was diagnosed as a baby, and I have been on oxygen since birth.

When did you first start having symptoms of PH?

I was symptomatic at birth. My mom says I was a very sick baby. When I was little, I would turn blue even if my mom took off my oxygen just to change my shirt. I am much better now since I am on the medicines TracleerTM and sildenafil, but I still get short of breath easily and I still wear oxygen all the time. Sometimes I get dizzy, and I run out of energy faster than a lot of my friends.

What activities do you like to do?

I like riding my bike and playing baseball and basketball. I also love to read and I especially like looking at maps.

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

I do get frustrated when I can't keep up in sports or carry heavy things, and sometimes I get tired of having to wear my oxygen. I can't carry my tank upstairs, and it is hard to walk on uneven ground and carry my oxygen.

How would you describe your life with PH?

I have always had PH, so I don't know any other way of living.

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

Hang in there. I have a really good life despite my PH, and you can too.

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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.