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
Kathy Parker (Her Mom)
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.