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.
Alex J. Cavanaugh says
Glad there are those in the medical field really focusing on it now. Sorry you couldn’t wear your new dress Saturday night.
Rebecca Bradley says
Christmas is coming, I’m sure I’ll get to wear it. But thank you Alex. It’s a small group, but they really are very focused and it’s great to see!
Margot Kinberg says
Rebecca – It really sounds as though the conference was terrific and informative. I’m sorry to hear you couldn’t wear that lovely dress, but I’m glad you learned new things, bonded with people who face the challenges you face, and had some good experiences. I hope more attention continues to be paid to EDS.
Rebecca Bradley says
It was a great weekend at the EDS charity is growing by the year and doing great things for us.
Jacqui Murray says
What program did you use to create the video? It came out wonderful.
I attended several conferences on my child’s rare disease and found so much comfort in them. I am glad this went well.
You’ll need to schedule another fancy event for your gorgeous dress, though.
Rebecca Bradley says
The video was done on iVideo on my iphone only. I don’t have an apple computer (yet!) so it was all done on my phone. It’s turned out quite well hasn’t it? The problem is, some of the photo’s were chopped off at the top or bottom. The slide with Invisible illness is bigger, should say underneath, on the inside. And at the top a picture of the Tardis!
The conferences are great aren’t they. They make you feel less alone as well as giving you much needed information.
Christmas is coming so maybe a chance will come up to wear my dress then.
emaginette says
Sounds like you’re among many wonderful supporters and you never know when that big breakthrough will happen. My fingers are crossed for all of you π
Anna from Shout with Emaginette
Rebecca Bradley says
Thanks Anna. There definitely were many great people there and I’m glad I went.
Joanna (Lazuli Portals Trilogy) says
So pleased you were able to go, even if the dress didn’t get an outing (yet!) Fingers crossed for more progress and understanding soon, both by the medical researchers and those in the caring side of the medical profession, and the general public as a whole.
Rebecca Bradley says
Thanks Joanna and that dress will get an outing at some point! π