Meet Iain! 

IainIain

This interview was conducted in Fall 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 Boulder Colorado.

How old are you now?
I am ten years old and will be turning 11 in October.

When did you first start having symptoms?
My Mom and Dad first noticed symptoms at my fifth year birthday party. I was playing indoor soccer with my friends and I was really tired and short of breath.

What symptoms did you have that caused to you be diagnosed with PH?
When I had my 5 year annual checkup, my doctor heard a loud heart sound. She sent us to Children's Hospital in Denver.

How did your friends and family react to your diagnosis?
My family and friends did many nice things for me. My best friend Matt climbed 14 14ers in Colorado to raise money for pulmonary hypertension. My Uncle Don takes me down to go fishing every year in Florida. I love to fish. My friends and family have been very supportive and understanding.

How has your life at school been affected by having PH?
I use to have to take medicine and change ice packs at school, but not anymore. I don't do some things at PE, but I do everything else.

Are there any activities that you feel like PH has stopped you from doing?
Yes. Some of the activities I can't do are soccer, mountain climbing and skiing. I can't go up to high altitudes for long. I also can't travel as much as I would like to.

What are some of your favorite activities that PH hasn’t stopped you from doing?
I love to play baseball (pitching and first base) and go rock climbing. I also ride my bike and go on walks with my family.

Is there anything you wish more people understood about having PH or about kids who have PH?
I wish that the school nurses better understood PH. I once went to the school nurse with a leaking broviac and she told me it would be all right and sent me back to class.

What is a message that you’d like to pass on to other kids with PH?
I want to wish all of my friends with PH well and to hope for a cure for them. I really look forward to seeing them again at the next conference.

 

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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.