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.
Ashford
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
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.
Dover and Deal
Vacancy
Maidstone
Mia
Hello, My name is Mia. I am a mother to 3 girls. Two of which have hypermobility. I got diagnosed with JHS when I was 19 and only last year got diagnosed with hEDS. It took 13 years for the diagnoses.
I am currently working in the NHS call centre environment. I am also a mental health first aider.
I come from a security background before I went over to the NHS. I miss it, but my body said no more.
I look forward to meeting you all and any questions don’t hesitate to email me.
Medway
Kara
Hello! I’m Kara, and I’m delighted to be your Area Coordinator for Medway, Kent.
I was diagnosed with hEDS in 2021, after a lifetime of unexplained symptoms. I’d always known my body was hypermobile (double jointed at the time), but for years no one really listened, and my concerns were dismissed. Finally getting a diagnosis validated my experiences, and helped me find better ways to manage my health and confidence to seek reasonable adjustments at work.
I’ve learned to really value staying active. I participate in rock climbing, BMX freestyle and dabble with crochet and sewing. These are all difficult with EDS, but keeping moving helps both my body and my mindset. I focus on what I can do and adapt so I can keep doing the things I love.
I’ve spent over 20 years as a volunteer skateboarding and BMX coach, mentoring people of all ages and abilities, running events, and building inclusive spaces. I wanted to volunteer with EDS UK because I know how isolating diagnosis and symptom management can be. My goal is to grow a friendly, supportive group in Medway where we can share experiences, cheer each other on, and remind every Zebra they’re not alone.
I look forward to meeting you and building a strong Medway Zebra community together!
Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.
Sevenoaks
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
Thanet
Debbie and Katie
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
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