It was fab, thanks everyone who organised it. Wheelchair pool was fun (sorry you ran over your foot though poppy!), and it was great to have so many experts in one place. Highlight for me was seeing Dr Hakim for first time since he saw me at UCH years ago. It made me remember how he made me feel - so validated. Back then he looked at me, told me I definitely had EDS, it was quite bad, that it explained all the pain and other complications I had, that I would continue to experience problems all of my life because it was genetic and it was DEFINITELY not my fault. Then he said that I was doing a really good job of living my life and he respected me - I'll never forget that. At the weekend, he did a similar job of making the whole organisation feel proud of itself. It reminded me that we should all give ourselves a pat on the back - we're working with a difficult condition, in adverse circumstances, and we're making progress with odds stacked against us. We are good
The venue was good, though I know there were problems with food for some. There were so many of us in wheelchairs this time - it did make for big queues at the lifts to get up and down to coffee etc. And the stair lift required a non-wheelie to go up and get it down before you could get on it (thanks tabi
) I did wonder if maybe we could have coffee from some sort of trolley in the main meeting room?
Also, well done hannah for your talk, and the t-shirts, books, business cards etc. Thank you for everything