SearchSupport Groups
Did you know...all our support groups are run by Area Coordinators who volunteer their time to organise meetings all over the country. Our Area Coordinators are from all walks of life including some who suffer with EDS, to those who care for someone with it. Without our volunteers, the support we provide to you would cease to exist, so we are incredibly grateful for the invaluable work they do.
We have over 100 groups online and face to face, with the aim to provide safe, friendly environments where members can meet others, listen to people’s stories and learn from each other. All of our support groups also have a closed regional Facebook group for members only.
We are very grateful to all of our funders who help pay for the meetings, training of our volunteers and much more.
Ashford
Hi, I’m Keely. I’m 37 and a specialist music and science teacher from Ashford.
I was diagnosed with hEDS in January 2020 after a lifetime of joint pain, POTS, gastric issues, fatigue and migraines. It was severely affecting my work as a musician, and as a result, I can’t really perform any more. I also found I was needing more help with day-to-day living and was struggling to come to terms with the changes that were happening to my body.
When I signed up to EDS UK a few months later on the advice of my physio nurse I found that my story was far from unique, and that most of us have faced long term unexplained pain and late diagnosis. I found a really supportive group in the Gaming and Puzzle clubs that ran over lockdown, and signed up for counselling to help me to come to terms which the adjustments I was going to have to make.
The support I received from EDS UK and from the others in the groups that I have remained friends with has meant I have been able to continue working as a teacher, and stop me feeling so guilty about changing how I work to make pacing easier, and to be less self conscious about using aids when I need them.
I’ve now signed up to the AC position for Ashford, so I can pay forward some of the support I received and also to help other musicians in a similar position to me!
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
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.
There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.