Welcome to the South East VEDS Support Group. This group and our meetings are led by volunteer regional coordinator Jacqui.
Meet Jacqui Fish
I’m delighted to be joining Annabelle's Challenge as the area coordinator for the South East as well as being on the Steering Committee. My son George, was diagnosed with vascular EDS aged 7 and at that time there was no support and no help. We were told to let him have as normal a childhood as possible and hope that there would be better knowledge and treatments available when he was older. So, fast forward to now, we have specialist clinics and Annabelle’s Challenge so things are definitely brighter.
I have been an area coordinator for Ehlers-Danlos Support UK for many years, running a support group for the Surrey area and I also fundraise for them and AC. In 2019 I qualified as a Community First Responder for the Southeast Coast Ambulance Service and although I am currently stood down to protect George I have found the training invaluable in helping him with his vEDS.
Life with vascular EDS is challenging both physically and mentally. I have seen how much support groups can help people to cope with their conditions and I hope that my experience with EDS UK will enable me to help the vascular EDS community in the South East.
For so many years we lived knowing no one else with this condition and it has been wonderful to meet lots of you already either in person or on-line. I am really excited to get to know our vascular EDS community better so that we can all share our knowledge and experience to help and support each other.
VEDS Support Group
Our regional face-to-face support groups are safe, confidential, relaxed meetings with lunch included!
Facilitated by our wonderful volunteer regional coordinators, all of whom have lived experience with vascular EDS either personally or in a caring role.
They offer a welcoming environment for you to meet others who are touched by vascular EDS. They provide a helpful way to share information, listen to each other’s experiences and together find ways of navigating the complexities of living with or caring for someone with vascular EDS.
Our support groups can help you build self-confidence, become more informed and this may lead to you becoming more in control of your life with vascular EDS. They help you feel you are not so alone including your loved ones.
How many vEDS members live in the South East?
60
2 - 74
Our next support group:
Register Your Interest
This support group also have a private Facebook group where you can get peer support from other members living in your region, please click here to request to join the group.
Freephone helpline
0800 917 8495
