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Madison’s Story (Ehlers-Danlos Syndrome)

EDS Ribbon Dear 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

Kathy Parker (Her Mom)
Submitted 8-26-2012

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.

This story 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.

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  1. Anjelena

    I understand the pain and the frustration because I have it also but they relate it to having fibromyalgia which it is NOT. I ask the SAME questions you do why no research why no awareness why no help??

  2. Kath

    Hi Maddison,
    You are a brave and very special girl because you have a different life journey than most people. You, I, and Angelina are one of the few people born with our genetic combination that shows us pain, discomfort and mental anguish. I am very sorry to hear you have dislocations daily and suffer broken bones, that is more severe than my symptoms. It sounds like you are in a lot of pain and discomfort. However I want you to know that you are not alone. You have the support of other EDSers from around the world although we are spread far and wide.

    There will be no research into a cure for our condition as it is genetic. Being a genetic problem means that our condition is encoded into every cell of our bodies in our DNA which means there is no cure for us already born this way. As genetic engineering improves in generations to come, so will the ability of humans to determine the genetic health of our future children. In the meantime, my kind advice to you is to manage as best you can with all the love, care and determination you can muster.

    The things that have helped me has been Pilates (from a very experienced practitioner) to help keep joints from hyper extending and building core strength to prevent back pain, Scenar treatment (I bought a device to use at home) for pain relief to avoid pain relief drugs, and LOTS of meditation and self love practices to learn to accept the body I have been gifted with and find pleasure in daily activities. Living with EDS has also taught me how appreciate the pain and suffering of other people with all sorts of disabilities whether they be physical or mental and be grateful for some of the simple moments that give me pleasure.

    Maddison, I hear your frustration and I hope you feel better for knowing you have a friendly EDS neighbour in Australia.

    Lots of love, care and support
    Sydney Australia

  3. Gillian Boehm

    I have found this conversation 5 years late, after googling EDS and scenar. Madison, I hope you are travelling ok. I agree with everything you say. My son with EDS is thirty and so far has had a pretty challenging time. I would love to see Ehlers Danlos highlighted in a media area so that more help can be given to sufferers.

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