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 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.

Ashford

Keely

02087365604

Contact group

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.

Canterbury

Hi I’m Jos, 44 years old and I live with my best friend Frankie (my cat). I am very happy to be the volunteer area coordinator for Canterbury.

I have hypermobile EDS and am an electric wheelchair user. I also rely on carers to assist me with daily life. I have always enjoyed being active, as my body allows, I love to do archery and swimming.

I look forward to meeting fellow members and facilitating meetings for members to access the help, advice and support they need.

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

 

Dover and Deal

Vacancy

Contact group

Vacancy

The Kent Facebook group can be joined here.

Medway

Hello! I’m Lily, and the area coordinator for Medway. I was diagnosed with hEDS when I was 22, and have been collecting the rest of the alphabet soup since then – I’m deaf (I can lipread!), autistic and likely have PoTS/dysautonomia.
I’m a parent of a very active toddler and work in marketing for my daytime job! By night I’m an accessibility activist. I’m really excited to meet others with EDS/HSD and comorbidities.

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

Sevenoaks

Ali and Ellie

Contact group

Hi.  We are Ali, Ellie and Kate, the Sevenoaks EDS Support Group Coordinators.

Ali:         I am one of those people who have spent years wondering how so many things could be a problem for one person! I used to tell people I must have been made on a Friday afternoon while God was napping! Finally I have a diagnosis of hEDS and had the surreal experience of sitting in a room with a load of other zebras just like me – it felt like coming home. I hope that this group will do the same for a few more people. Ali

Ellie:      Hi, I’m a 20 something nanny, but currently I can’t work due to my health. I live with my parents and love any form of craft and art whenever my health allows. I love chatting anything childcare, craft or rabbits! I am really excited to connect with other people who have EDS (or suspect they do) and share both the good times and the hard ones together.  Ellie

With help from the lovely team at EDS UK we decided to set up a local support group, and we look forward to welcoming you!

Best wishes

Ali and Ellie

Facebook: Ali Ellie Kate

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

Thanet

Debbie and Katie

Contact group

Hello everyone I would like to introduce myself as the Thanet Area Coordinator. I am 35 years old and I live in Broadstairs with my partner and my three children, 2 of whom have EDS.

I was diagnosed with EDS in 2011 after years of health problems, misdiagnosis and chronic pain. I am excited about meeting fellow sufferers and their families and enabling you all to have access to the advice and support that EDS UK has to offer. I would also like to organise meetings that enable members to gather information on EDS matters whilst meeting other EDS sufferers.

Looking forward to meeting you all soon!

Hi there, my name is Katie and I have the absolute privilege of joining Debbie as a second Area Coordinator for the Thanet area!

I am 42 years old and live in the Westbrook (Margate) area. Like many Zebras I had a very bumpy road to diagnosis which spanned many years. I eventually received a diagnosis of Hypermobility Spectrum Disorder in 2004 which was updated to Hypermobile Ehlers Danlos Syndrome when the new criteria was introduced.

I worked as a Paediatric Nurse / Junior Sister for 17 years but sadly had to take early ill health retirement due to my declining health in February 2019. I look forward to meeting and interacting with fellow sufferers and would love to help facilitate and run regular meetings, coffee mornings and more to highlight all that EDS UK has to offer and to help others to access the help, advice and support that they need. I so look forward to meeting you all very soon! xx

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