Meet Katy!


This interview was conducted in spring 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 Sandy, Utah

How old are you?
I am 11 years old.

When were you diagnosed?
I was diagnosed July 1, 2003.

When did you first start having symptoms of PH?
I first started having symptoms when I was 2 or 3.

What were your symptoms?
Around age 2 or 3, I started fainting, so my parents took me to the doctor to get me check out.

Do you do summer activities (like go to camp)?
I don’t go to camp, but my parents like to take my family on vacation.

Have you ever felt unable to do something because of PH?
Yes, I do miss out on some things, like playing summer sports.

What has changed in your life since you were diagnosed with PH?
I feel like I’m not a “normal” kid sometimes. I miss a lot of school, and I can’t run as far as the other kids in my grade.

What is a message you’d like to pass on to other kids with PH?
I want them to remember to keep their heads up high and not to give up hope.

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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.