9-Year-Old EDSer “Fights Like a Girl”

 

MADDISON Parker, 9, lives by the saying “suck it up, princess”. She has to say it several times a day as she battles with Ehlers-Danlos Syndrome!

maddison-parkerDear World,

My name is Maddison Parker, I am 9 years old, and I have Ehlers-Danlos Syndrome. I want the world to understand Ehlers-Danlos Syndrome, so am sending this email out. I have some questions for you all! I would like to know why no-one cares about Ehlers-Danlos Syndrome? May was Ehlers-Danlos Awareness Month, and no-one really cared because I didn’t hear anything about it anywhere! My grandma even sent a letter to a current affair telling them it was the awareness month, and again, nothing happened, they didn’t even reply!!

A week in my life is full of pain. I’m constantly heating up my heat pack, and needing pain medicine. At school I cant finish my school work because I’m in so much pain, and all my joints dislocate. In case you don’t know Ehlers-Danlos Syndrome is a connective tissue disorder that makes all my joints flexible, and pop out for no reason. It makes me very tired all the time, I can’t play with all my friend’s because when I run around my joints pop out.  It hurts, and I get really tired. It doesn’t  just make my joints pop out, but it effects my balance, my eyes, my heart, my  tummy, my skin and even my blood. It is a really painful thing to have. It’s not fair!

I’m in and out of hospital, and my wheelchair. I dislocate my joints every day and have pain all day, every day. If I break a bone it takes me 3-4 months to heal when a normal person only takes about a month to heal! And my muscles disappear when the bones heal.

I’m sick and tired of everyone saying there is nothing wrong with me because I look fine, and that it’s all in my head.  There are lot’s of other disabilities you are trying to raise money to find a cure. But NO, not for Ehlers-Danlos Syndrome. As I said before, I am in and out of hospital, I know every corridor of the children’s hospital and the sunshine hospital. Even some of the doctors say, ”You again!” So I want to know WHY aren’t you trying to raise money to help cure my Ehlers-Danlos Syndrome???? The doctors don’t know much about it, and cant really help me.

If I could change one thing about the world it would be the way people understand Ehlers-Danlos Syndrome! I want to know WHY no-one cares and WHY no-one is trying to raise money to find a cure! WHY don’t I matter??

From Maddison Parker

Maddison is a brave young lady who is focused on EDS awareness.

Click here for the original source of this article

We appreciate your Likes and Comments

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

Loading ... Loading ...