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.

Thanet

Debbie and Katie

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

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

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.

There are currently no meetings in the diary for this support group. If you have selected to receive notifications on this support group we will notify you when one is organised. You can update what Support Groups you are notified about in your member profile.

More Support

Support groups, advice with work, help with benefits and more