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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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.