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.
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.
Central London
Vacancy
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Croydon
Vacancy
Vacancy
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Dartford and Welling
Lyndsey
Hi everyone, I’m Lyndsey!
I am so excited to write this I almost don’t know where to begin!
So, EDS UK have asked me to write a little bit about ME! So here goes, I am 38 and I was born in Greenwich South East London. My family are in and around South East London and Kent so I know the area well.
I have Hypermobile EDS, PoTS, full body Arthritis & a mutated Heamochromatosis gene. I deal with the varied challenges these conditions pose on a daily basis. Through my continuing battle I have gained a lot of knowledge and feel I can share a lot with you all; I don’t believe anyone should face this alone.
In my wider life I have many interests, and perhaps one of my more unusual ones is that I keep turtles! I currently have 7 and my partner says I have enough now but time will tell! I am approachable, fun (some may say funny!), I love to listen and am so excited to be working with EDS UK as the Area Coordinator for Dartford and Welling. Looking forward to chatting with and meeting as many of you as possible.
***Gentle Hugs***
Lyndsey.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group
East London
Ana
My name is Ana
A data scientist by day and an acroyogi by night, I am no stranger to the doctor’s waiting room or physio office.
Having experienced multiple joint pains and strains over the last 12 years, it was only in 2023 that I learned that hypermobility might be responsible for my tendency for injuries, difficulty sleeping, and even my soft skin!
When I have energy I love to do acroyoga, travel, dance salsa and bachata. On lower energy days I enjoy reading, completing NYT puzzles, painting and tending to my plants.
As someone who was born and raised in East London, it is a pleasure to be able to give back to the community and to create a place for those with EDS/HSD to come together and support each other.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
North London
Vicki
Vicki is your North London volunteer Area Coordinators.
Hello there, my name is Vicki. I am one of the coordinators for the North London support group, and I’m very much looking forward to working with EDS UK. I was diagnosed with EDS in 2008, before which I spent several years mainly lying down, with little medical support. After diagnosis things got better for me, as I was able to ask the right questions and seek better medical help! I am now a qualified counsellor, and when I’m physically able I love to go for walks, socialise, and play the piano. I understand how difficult it is to access help and support, and how hard it can be to manage a chronic illness.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
South London
Vacancy
Vacancy
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group
Waltham Cross
Jourdain
Hello! I’m Jourdain, a Physiotherapy student at the University of Bedfordshire.
Currently work based in Luton, I enjoy supporting individuals with complex, often invisible, chronic conditions like Ehlers-Danlos Syndrome (EDS).
My mission is to help create a space where everyone feels supported. Did you know there are 13 different types of EDS?.
I am committed to provide support both virtually or in person.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group
West London
Monifah and Helen
Your West London volunteer Area Coordinators are Helen and Monifah
Monifah: I have Hypermobile EDS & Sprengles deformity each which play hand in hand with each other which has meant I’ve spent the last ten years trying to adjust to my new normal and at 20 years old that hasn’t been easy. My goal for being area coordinator for West London is to help any young people feeling misplaced or confused with finding a way forward. Monifah X
Helen: My name is Helen and I am really happy to be joining as an area co-ordinator in West London. I have lived in London longer than I have lived anywhere else, but my accent is still very Scottish! I have been living in West London for the last 6 years.
I have Hypermobile EDS, as well as a few co-morbidities, including Orthostatic Hypotension and ADHD. I was diagnosed in 2021, aged 41, after a lifetime of symptoms and unexplained pain and illness. Like most of us, I’m constantly re-evaluating what I can do and how much I can do, but it’s helped by finally knowing what is happening with my body.
I work for a charity, and I am a qualified trainer. I train alongside people with intellectual disabilities and/or autism, so making sure they are included in conversations is a passion of mine. I also am very interested in neurodivergence in general, and even more so with how it is linked with connective tissue disorders.
I’m really looking forward to meeting some fellow Zebras in West London.
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group
More Support
Support groups, advice with work, help with benefits and more
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