Meet Shannon!

This interview was conducted in winter 2009 by Mira Kruger, the granddaughter of a PH patient and a volunteer writer for PHA’s Pathlight newsletter. 

Shannon is pictured here climbing the 300 steps of the Bunker Hill Monument in Massachusetts. Shannon and her father celebrated 2008 PH Awareness Month by climbing these steps, a feat they have dreamed of accomplishing since Shannon’s diagnosis.

How old are you?
I am 13 years old.

When were you diagnosed?
I was diagnosed in May 2001 when I was in kindergarten.

When did you first start getting symptoms?
I was actually in my friend’s bathroom at the time. We were having a play date.

What were your first symptoms?
The room turned periwinkle, and I felt dizzy and short of breath. I called my parents, and they took me to the doctor.

How long did it take for the doctors to diagnose you?
It took about one year. The doctors kept guessing different things, and the entire time I was getting worse and worse. I was on a heart monitor, and it was really scary for me being so young. The first day I was out, my friend told my teacher. My parents didn’t want to make such a big deal out of it.

Do you go to camp?
Yeah, I do go to camp. It’s really fun.

What do you do differently now that you have this disease?
I don’t really do anything differently. My life now is pretty normal.

Have you ever met anyone else with this disease?
My friend Emily has it. She’s three years younger than me, but it’s fun to talk to her about it. She understands that just because you have PH doesn’t make you different from everyone else.

Do your teachers treat you differently?
Yeah, they do. They act really nice to me, because they feel bad for me. I’m not in all the right classes because of the school I’ve missed.

Do the kids at school treat you differently?
Not really.

What do you want people to know about you?

That I’m just a normal kid. Just because I have a disease doesn’t mean I’m not just like them.

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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.