I'm 15 years old and have Ehlers Danlos Syndrome and POTS. I was diagnosed when I was eleven when my shoulders started dislocating and my scapulas winging during swim team season. At that point, I started experiencing a lot of pain all over - especially in my knees, ribs, and shoulders. A year and a half later at the end of the summer, I started getting very dizzy when standing or sitting for too long or when going from sitting to standing. It was then that my doctors discovered that I had POTS.
There have been a lot of changes in my life. I gave up basketball and swimming and replaced it was physical therapy. I have a shortened school day, and I've had to learn how to manage my activities so that I don't get overly exhausted and fatigued. I'm currently working with an organization called PAALS (Palmetto Animal Assisted Life Services) to get a service dog. I'm really excited about that as my dog will be trained to help me with mobility, pick up things for me (which will help me with dizziness and pain), open heavy doors, and to ease my anxiety when things seem overwhelming.
There is an up side to my illness. I've met so many great friends at medical conferences and even doctor appointments. Also, my friends here at home are true friends who love me for who I am. They are willing to do what it takes when I'm hanging out with them - whether that means pushing me in a wheelchair or giving me the only bed at a sleepover. The relationships that I've been blessed with are pretty amazing - and I really wouldn't trade them for the world.
I'm always amazed at the number of people who want to help me and my fellow peers with pediatric pain. I think I can speak for all of us in saying, "thank you, it means more to us than you will ever know." Everything that TCAPP does helps make our lives more normal and a little easier - whether you donate your money or your time - you make a difference in all of our lives.
Posted on Sun, April 14, 2013
by David Garrison