Hi I’m Zan and the Area Coordinator for Truro and surrounding areas.
I wasn’t diagnosed with EDS until I was 45. As soon as I got the diagnosis, everything fitted into place but then I was put into GP care, none of whom had a clue. This was part of my decision to become an Area Coordinator, there must be others in the same position and need support.
I spend some of my time fundraising for various local organisations. The rest of my time is spent listening to music, I’m slightly obsessed with George Michael and The Slow Readers Club. I’m also an avid fan of Wigan Athletic Football Club.
Hello I’m Riley and I use he/him pronouns. I became involved with EDS UK about a year ago now and have been attending Simon’s zoom meetings in the South West. I am now helping Zandra to facilitate more meetings in the South West.
I currently have a diagnosis of hypermobility syndrome along with comorbidities that come along with that including stomach issues and many other symptoms relating to EDS. Some of my favourite things are the London Underground, London in general and trains – I very much enjoy trains.
I am also on the autism spectrum which means I struggle a lot with daily management of these conditions and support groups have really beneficial for me by showing me that I’m not the only one having to deal with floppy joints. It has also given me an understanding of the condition and how it affects me specifically.
My role supports Zandra with her group, including facilitating groups if she is away.
I’m really happy to be involved as an Area Coordinator and I hope I can help people in our community
benefit from the group’s as much as I have.