This Saturday, I had the privilege and pleasure of attending the EDS UK Hypermobility Conference.
I know very few people with EDS in real life. I have a few contacts I have made online, but not people that I have ever been able to sit and have a coffee and a chat with. So on our way to Daventry, I was a mixture of excited and apprehensive.
By the time I had been there for 15 minutes, all the apprehension had gone. We registered, and met the lovely Lara, who I have a huge amount of respect for. She is a bendy herself, but she is like a superwoman! She's really lovely, and it was a real pleasure to meet someone so inspirational. She let us know that the first two tables were reserved for wheelchair users, and off we went. I really needn't have worried. We were sat with three lovely bendies and their families, which offered great opportunity for conversation, tip swapping and story comparing. I was very impressed by the Fimo clay handles on things, shaped to the owner's hand. Very clever!
There were talks throughout the day, all of which were hugely informative. Professor Rodney Grahame, one of the leading experts on HEDS in the UK, stepped in at late notice to cover the talk on HEDS and the Gastric system. This was something I was very keen to learn more about, as I have been having GI problems for some time, and have never got further than it being constipation due to my pain meds, and unexplained gastric reflux. I came away with a lot of notes on this one, ready to visit my GP soon. The evidence for the links was fascinating.
This was followed by a talk on the FODMAP diet. I have undergone this diet before, and sadly, it didn't make a huge impact on my symptoms. However, I would be willing to give it another try, properly managed at another date, as others have found it incredibly helpful.
Professor Grahame then did another talk about some of the newer findings in the ongoing research into HEDS. He is an absolute legend, and it is a true shame that he has now retired. He's been fighting our corner for a bloody long time now, and is a really lovely man. Several people were in tears during his talks. However, his replacement at UCLH, and as a chief medical advisor to EDS-UK, is looking to be an absolute firecracker. Dr Hanna Kazkaz came to the microphone for an introductory speech, and from that speech, I think our community was very encouraged. She was absolutely passionate about getting more recognition and awareness of EDS, and I truly believe she will work extremely hard to do so.
Lara then gave a talk about the Charity, her role within it, and what we can expect from the next year at EDS-UK. She absolutely blew me away with just how much she carries on her shoulders, especially bendy shoulders at that! She mentioned local groups being set up, and that they would need volunteers. I am interested in this, but I will have to see how things go.
There was a talk from a lady called Joanne Teague, who has written a book about her journey with Vascular EDS. Her presentation was lovely, and it was great to see that she is still here, a decade after being given two years to live. A very inspirational lady.
I was very looking forward to the presentation by Dr Anthony Vandersteen about genetics and EDS, but sadly, the venue's projector decided it had had enough. He did a good job of winging it, but sadly it was a lot harder to follow without seeing the slides. I was able to glean some useful information from it though, which was helpful.
The last item on the agenda was a workshop. The room was divided, and there were 4 areas - one for over 35's, one for under 35's, one for parents and one for partners. Mum and Dad shuffled off to the parents, and I wheeled in to the under 35's. Interestingly, all of the people in that group, the only males in the room were brothers, fathers and partners of girls with EDS. We went around the room, and each person there told their story. It was amazing to see how every story was so similar, and it was both heartwarming and heartbreaking in places. I was too shy to talk to people individually, but it was great to see others swapping details and getting to know each other.
It was a long old day, which has caught up with me today (this post is brought to you from pyjamas and a slanket on the sofa!), but it was worth every ache and pain to have been there and learned so much. There is going to be a residential conference next year, and I cannot wait!
Bendy Girl Incident: When flushing the toilet, I slipped off the handle, dislocating my thumb and two fingers. FAIL!