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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.
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.
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.