As you know, I attended the Ehlers Danlos UK conference this past weekend and what a packed weekend it was!
There were eminent speakers in the EDS field from home and as far afield as the United States and they covered a whole host of topics. Here are the itineraries for day two and day three which I attended.
There was so much information provided that I’m still taking some of it in. And what did come out of the weekend is that there has been an explosion of understanding about the syndrome within the past five years. It has been realised just how much is connected to our faulty connective tissue and some great doctors are getting involved, though as a whole, there is a lot of misunderstanding still within the wider medical community that we as patients still have to fight against. It is great to see the passion from the doctors and professors that are involved on our side though. For them I know we are all truly grateful.
Unfortunately I was unable to make the zebra ball on Saturday evening. I’d bought a new dress as well! It was just so full on through the day, and with the issues with my neck and head that I’m having to contend with at the moment, I couldn’t make it, which was a real shame because it was a better opportunity to speak with fellow sufferers.
Sunday I was measured up for thumb splints and finger splints by the silver ring splint company who were there. These wonderful things keep joints in place and look beautiful at the same time. You will see a photograph on the below video of the thumb splint, it’s not me, I borrowed the photograph from the EDSUK twitter feed. It belongs to one of them.
I can’t thank EDSUK enough for putting this together. It ran seamlessly.
Below is a short video I put together similar to the one I created when I attended the crime writing festival at Harrogate. It’s made from one second video clips and photographs. With thanks to Annabelle’s mum, the mum of a little girl with vascular EDS, EDS UK, Silver ring splints and Shane Robinson, the Ehlers Danlos National Foundation Director. The music I initially set it to when creating on my phone personally was Alicia Keys Wait Til You See My Smile, which was perfect for this, but YouTube picked up it was a recording artist and I couldn’t use it unfortunately, so there is just a background track playing. I hope you get a feel for all that the syndrome and weekend entail.