Storytime:

1: So after my initial diagnosis Ehlers Danlos Syndrome (with a private consultant), I came back to my GP who completely dismissed the diagnosis. So I decided to see a public rheumatolgist.
He looked at my joints, my skin etc and said...

2 "Yes. It is EDS alright. But, I don't know why you're here. I can't help you". My husband had never been there at appointments before to see the kind of gaslighting and dismissiveness I had experienced with medical professionals. He was stunned to here a DR come out with that.

3 So we had to go to London for help, having to raise 20k to be seen and tested by the best of the best. My children were also seen in the UK.

4 Especially our youngest who, by 7 months suffered her first dislocation. When we brought her to Templestreet when she was over 13 mnths. we were concerned that she was showing no signs of starting to crawl or walk. She was bum shuffling. The consultant said it was CUTE and

5 there was no need for her to be seen in the UK. Cut to us all in London being seen by the specialist paediatric physio. I told her what the consultant said about the bum shuffling and she was literally open mouthed gobsmacked.

6 I would even go as far as saying she was disgusted. No wonder your child isn't walking! (16 months at this point). So after following the physios instructions, Olivia learned to crawl and by 17 months she was walking

7 Going back and forth from London wasn't sustainable. So I wrote to @SimonHarrisTD to ask for a meeting to discuss the need for an appointed consultant with a multi disciplinary team in Ireland. TWICE I was sent emails from his office outlining what EDS is and how

8/ all rheumatolgists could look after Irish sufferers. My request for a meeting wasn't even acknowledged. Also just to mention, when we went public with our story to raise funds for London, the HSE released a statement saying:

9

10 and yet...
We attended the London Hypermobility Unit which was located in St John's Wood at the time.

11 My children are already far more obvious than I am. They injure more, their tummies are always at them, they get fatigued, migraine etc.
I am SCARED for them and their futures. We also have issues with accessing suitable housing but that's a thread for another day.

12 If you have made it this far, thank you! Please sign and please write to your TD about the need for an appointed consultant for EDS. Don't worry, the link does work! https://my.uplift.ie/petitions/appoint-a-qualified-consultant-for-ehlers-danlos-syndrome-in-ireland

13 A quote from my UK consultant.