Support 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 50 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 for a Big Lottery Fund grant through the National Lottery which helps 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

I have Hypermobile EDS. My working life has included being a journalist and a teacher, but a few years ago the condition became too disabling and I took medical retirement. Now I concentrate on voluntary projects and I’m really pleased to be the Area Coordinator for North London.

The North London area support group comprises a broad swathe of London north of the river, from Uxbridge in the West to Ilford in the East. My aim is to continue creating a wonderful active support network across the area. Meetings are friendly and relaxed, where people can get to know their peers, swap tips and experiences. In addition I hope that by working together we can raise awareness and funds to support EDS.

I am always contactable via phone, email or through our local Facebook page, please don’t get hesitate to get in touch if you’d like to discuss something or if you just need a sympathetic ear.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Croydon

Hi

My names Nicci, after years of joint related issues, I was finally diagnosed with EDS and other associated conditions at the age of 23.

I have always enjoyed helping others and realised that I wanted to be able to help others with EDS, so I qualified as an orthotist/prosthetist.

I now spend my days running orthotist clinic’s in and around the surrounding areas of London. I specialise in biomechanics and make/prescribe a range of made to measure and off the shelf orthoses, to help alignment/posture, walking and reduce pain.

I’m very passionate about improving the quality of care and am active in creating more awareness around EDS and the care available.

I’m looking forward to being the Croydon area coordinator and growing the EDS community.

I’m very motivated, as there was a lack of support when I was diagnosed, so am delighted to be able to give the support, that I didn’t have to others.

I will be running support groups within the Croydon area, but am also able to do 1:1 if preferred, within local coffee shops.

I will also be helping on the medical advisory panel for any orthotic advice or concerns, so if you have any questions give me a shout.

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

Contact group

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 Kent.  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

Kendall

Contact group

“Hi! My name is Kendall, and I am the new volunteer area coordinator for East London. I moved to Hackney from Ohio, USA when I was 18, and I’ve been here ever since.

I was diagnosed with Hypermobile Ehlers-Danlos Syndrome at the age of 29. I was fortunate to attend the Hypermobility Clinic at UCL Hospital, where I joined a specialist pain management group therapy. Here I gained a network of others to talk to with a shared experience, and I’m so excited to join EDS UK to enable more networks for support.

Professionally I worked in the arts for 10 years, but in 2019 I resigned as my condition worsened. I have done work in disability arts, and I’m passionate about the Social Model of Disability. I am currently undertaking a degree in adult nursing at King’s College London, getting more involved in the EDS community and looking at driving change in healthcare.

I hope as the East London Support Group develops, we can make it a space where anyone can come to talk, share or just be a part of the community. Don’t hesitate to get in touch and join us.”

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

I have Hypermobile EDS. My working life has included being a journalist and a teacher, but a few years ago the condition became too disabling and I took medical retirement. Now I concentrate on voluntary projects and I’m really pleased to be the Area Coordinator for North London.

The North London area support group comprises a broad swathe of London north of the river, from Uxbridge in the West to Ilford in the East. My aim is to continue creating a wonderful active support network across the area. Meetings are friendly and relaxed, where people can get to know their peers, swap tips and experiences. In addition I hope that by working together we can raise awareness and funds to support EDS.

I am always contactable via phone, email or through our local Facebook page, please don’t get hesitate to get in touch if you’d like to discuss something or if you just need a sympathetic ear.

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

My name is Cate and I am really pleased to be a volunteer Area Coordinator for South London –

I am diagnosed with hypermobile EDS together with other comorbidities.
I used to have a very active life and I have enjoyed working for multinational companies in Marketing and Media.
A few years ago a flare up put an end to all this so I retrained as SEND Learning Assistant and I worked for the local secondary school and later I worked as a Key Worker with young adults.
My passion for knowledge and science led me to read several books on pain, neurology and how the brain works and expand my knowledge.
Volunteering with EDS UK gives me the opportunity to support others in their journey and doing it keeps my pain at bay.
I now also volunteer with my local primary school and with my local church.
Looking forward to continue this journey together.

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

Tincy, Jane and Monifah

Contact group

Your West London volunteer Area Coordinators are Tina, Jane and Monifah

Tincy: I live with Hypermobile EDS & POTS, my working life consisted of retail/office work, a few years ago I had to reduce to part time work then stop entirely as the condition began to take its toll. My focus is on doing  things unconventionally now, assuming voluntary roles, I’m passionate about projects that believe in inclusivity and are accessibility, I feel privileged to be the Area coordinator for west London, and look forward to connecting people with each other and seeing this wonderful community flourish. Tina x

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

Jane: Although I do not had EDS myself I am the parent of a young person with HEDS and POTs.  I have spent the last 18 years educating myself to provide support to my daughter and to advocate on her behalf, dealing with schooling, health practitioners, sports and physio specialists and working to encourage her independence and self-advocacy as she became older.  I know what it feels like to have your concerns as a parent dismissed and not listened to and have found different ways to work through the minefield of diagnosis and support.  I look forward to working as one of the West London Area Coordinators and time meeting everyone.  Jane x

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