Support Groups

Hi, I’m Jess and I’m really pleased to be your Sandy Area Coordinator.

I have a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS), with further genetic assessment ongoing. My journey to diagnosis was a long one, with signs present from childhood that were not fully recognised at the time.

Like many people with EDS, I am continuing to learn how to work with my body in a way that respects pacing, limits, and long-term wellbeing.

I also live with Functional Neurological Disorder (FND) and am neurodivergent, which has shaped my understanding of how complex and individual these experiences can be, particularly within systems that don’t always offer flexibility or understanding.

I wanted to volunteer with EDS UK as a way of giving back to a community that helped me find knowledge, connection, and confidence at a time when I needed it most. Community has been vital to my own journey, and I strongly believe in the value of shared understanding and mutual support.

My hope is to help create a supportive, welcoming space where people feel heard, respected, and less alone, whatever stage they are at.

I look forward to connecting with you

Please note that Volunteer Area Coordinators may not get back to you immediately.

If you need to talk right now, whatever you’re going through, there are people you can talk to any time. You can:

call Samaritans on 116 123 (UK-wide)
text SHOUT to 85258 (UK-wide)
call C.A.L.L. on 0800 132 737 (Wales only)

These services are for anyone who’s struggling. They won’t judge you.

They’re free, they’re anonymous, and they’re always open.