Elhers Danlos Syndrome Awareness Month.

At the top of my page you may notice a tab called My Little Zebra, if you click it you will be taken to a new blog all about my little girl who has Elhers Danlos Syndrome.

As it is EDS awareness month I’m going to share her story here, only a little more condensed.

Starting at the beginning she was born normally, a little early but everything was ok apart from a little panic just before the birth when they thought I might need a C-Section. She was fine, a great weight and looking healthy.
She was a cry baby though, and would scream and scream all the time. The only thing that settled her was lying her on her back and ‘cycling’ her knees. This is a relief for colic which we thought she was suffering from. As she got a little older she was always complaining of her knees hurting and although she met all her milestones and was walking by the time she was one year old, she didn’t like walking much and complained it hurt.

When she was three years old we took her to the hospital because we were worried about the pain she was complaining about when walking. x-rays and tests showed nothing but it was noticed that she had hypermobile knees and ankles. I looked it up and it said that it just meant she was double jointed. So we all battled on.

At six the hypermobility seemed to be getting worse and she was seeing a physio therapist to help her.

At seven she had her first subluxation, in her neck! Of course we didn’t know it was a subluxation back then, neither did the hospital. They tried first with muscle relaxants to treat her, then a collar. When that didn’t work she was given a manipulation followed by a halo. Halo sounds nice doesn’t it, kind of angelic. They are not. Details are here if you wish to know more. In the meantime, here is a photo of my angel in her halo.

A few months later the halo was removed and we were horrified to find that the subluxation returned, immediately. The next step was a fixation and she was taken back to surgery while they fixed her cervical spine with a bone graft and screws. Then they returned the halo!

This worked and her neck was fixed but with only 50 % of it’s mobility. The consultant said her ligaments were particularly stretchy which is why they wouldn’t hold the bones in the place. He never accepted that the subluxation had happened without a trauma, but we know for a fact that it did.

This got me thinking and after a bit of research I learnt that hypermobility + subluxation+ lax ligaments could be Elhers Danlos Syndrome. So I asked for a referral to a rheumatologist who confirmed my suspicions but wished us to see a geneticist too.

You can read what happened at the geneticist here, but in brief, she does believe that she has EDS but possibly not hypermobility type like we suspected. Now she is waiting on further tests to find out if she has another type of EDS and/or Marfan Syndrome.

In the meantime my girl is doing fine, her scars are healing and apart from a couple of subluxations in her ankles she is carrying on like a normal (ish) ten year old.

EDS is a rare condition and even doctors are not totally aware of it. This is why awareness is so important. It comes in many forms and some of them can be life threatening so diagnosis is especially vital. This month is EDS awareness month and the EDS support group are creating a thunderclap on social media set for 20th May. This means that thousands of people all over the internet will get a message about EDS and it will help to raise awareness. To join the thunderclap please click on the badge below. It takes just a moment and will post just one message to the social platform of your choice.

If you would like to learn more about Elhers Danlos Syndrome then please visit the Elhers Danlos Syndrome website. Or ask me, I’d be willing to help with any questions and point you in the right direction for help if you have concerns yourself.

12 Comments

  1. May 5, 2016 / 1:06 pm

    Have joined in. Your little girl, and you, have been through so much and I'm sure more understanding – particularly from those in the medical profession (!) would help. xx

  2. May 5, 2016 / 6:14 pm

    I'm sorry to read about this. I have a friend who has EDS and it has been a real struggle. Finding the right support and care is vital so I wish you all the best. Me and my kids have hypermobility, but I know this is a step way beyond.

  3. bavariansojourn
    May 5, 2016 / 7:39 pm

    Your little girl sounds so brave to cope with it all. I knew little about EDS so this was really informative, thank you. x

  4. May 5, 2016 / 8:26 pm

    Great awareness post though so sorry your daughter and your family are being put through this. Hope you get the support and help you need. xxx

  5. May 5, 2016 / 8:53 pm

    Well done on raising awareness and I'm sorry that you are all going through this. What a brave little girl.

  6. TheMadHouse
    May 6, 2016 / 3:02 pm

    I have joined in. Well done for raising such a beautiful girl – living with a lifelong condition can be really hard, not only for your child, but you too. It must have been quite a traumatic time for you.

  7. May 6, 2016 / 8:16 pm

    Oh my goodness what a time of it you guys have had and how brave is your dd. So glad that your finally getting some answers and the care and support you need and thanks for letting me know about a condition I had never heard off xxx

  8. May 12, 2016 / 7:54 am

    That must have been so difficult for you all – what a brave girl you have x x x

  9. May 12, 2016 / 11:19 am

    Well done for raising awareness – and what a brave girl you have – I hope they find the right treatments to help her as much as possible.

  10. May 16, 2016 / 7:12 pm

    Well done on raising awareness – looks like you have a very brave young lady on your hands

  11. globalmouse
    May 18, 2016 / 10:48 am

    Gosh, what a brave daughter you have. I think it's brilliant you're raising awareness, good luck with everything you're doing.

  12. June 21, 2016 / 9:11 pm

    Oh my gosh that must be tough. Thank you for sharing your story. xx

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A little Note About Positive Reviews on Raisie Bay

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