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.

Ashford

Vacant

02087365604

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support.

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.

 

Medway

Vacant

Contact group

There is currently a volunteer vacancy for this area. Please contact kirsty@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support.

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

Sevenoaks

Kate, 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

Kate:     Just over a year ago I finally met a doctor who knew what was wrong with me.  I lose a day each week to sleep, have to work at managing pain, but outside of that I’m learning to dance with my husband, I love being a busy Mum, catching up with family & friends, going on holiday and hiking.  I’m looking forward to meeting fellow zebras and hope this group provides support for for all of us. Kate

Perhaps unsurprisingly, the three of us (& Kate’s younger daughter) met at the physio’s gym in Sevenoaks, and since then we have become good friends.  We enjoy chatting without having to explain, whether comparing experience with doctors, favourite salty snacks, or not looking sick.

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, Ellie and Kate

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