Meet Tara!

This interview was conducted in winter 2011 by Mira Kruger, the granddaughter of a PH patient and a volunteer writer for PHA’s Pathlight newsletter.

Tara with her dog CaesarTara with her dog Caesar

Where do you live?
I live in Queensland, Australia.

How old are you?
I am 12 years old, and I’m turning 13 next March.

When were you diagnosed?
I was diagnosed in 2000, when I was one-and-a-half years old. I was literally on the operating table to have heart surgery to fix the heart defects I was born with when the surgeon discovered my high pulmonary pressures.

When did you first start having symptoms of PH?
I first started having symptoms early in 2000.

What were your symptoms?
My symptoms were blue lips and declining oxygen, which the doctors thought were caused by my heart defects.

What activities do you like to do?
I love dancing, playing netball and swimming. It’s hot and humid where I live, and I have a pool that I can swim in that the Make A Wish Foundation gave me when I was 8.

Have you ever felt unable to do something because of PH?
I am unable to go running because I get puffed and out of breath, but I really wish I could run in my school carnival.

How has your life changed since your PH diagnosis?
Since I’ve had PH from a very young age, I don’t really know what life without PH would be like. Sometimes I get annoyed because of all my medications, doctors’ visits and tests that interfere with what I want to do. I know I need all my medication, but sometimes I wish my doctor would let me stop taking some of the medication.

What is a message you’d like to pass on to other kids with pulmonary hypertension?
Enjoy the things that you can do and don’t worry about what you can’t do. Stay strong and brave and as active as you can.

 

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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.