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.
Lincoln
Claire
Hello, I’m Claire and I am honoured to be your Lincoln area co-ordinator.
Throughout my working life I have worked overseas in travel, and for the last decade, loving my jobs as a teaching assistant, before having to give up work completely 5 years ago. This devastated me as up until that point, I’d always prided myself on staying as active as possible.
I knew something had been wrong for many years as I had had many problems which hadn’t been linked to one another by the many different types of specialists I’d seen. I finally got my diagnosis of hEDS 3 years ago from 2 specialists who said they couldn’t believe it had been missed all these years.
Finally, the years of pain and fatigue, along with a shopping list of other symptoms , made sense. After years of dizziness and blood pressure issues, along with Vaso vagal syncope, and once my heart rate skyrocketed, I was diagnosed with POTS, which has really hindered the way I now live.
My positive mindset has always served me well and at times I’ve had to rely on it heavily. I have found attending the EDS group myself invaluable. The support and level of understanding from fellow zebras is so vital as a community. When we needed a new volunteer to run them, I was happy to put myself forward if I could do half as good a job as the young lady previously.
I am really looking forward to seeing you and forming a group to offer support and encourage one another in sharing your journey and experiences with this chronic illness and to help you feel visible.
I look forward to speaking and meeting up with you soon.
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.