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.
Newcastle
Nicola
I’m Nicola, I’m 42 and live just outside of Newcastle. I work as a Process Improvement manager for a travel insurance company, in my spare time I try to keep active with light QiGong, I have a strong spiritual practice with meditation being one the most important tools in my toolbox, and I enjoy travelling.
The memories I have of my symptoms go back to around the age of 12, and since then the symptoms have become more varied and life impacting, starting with gut issues then joints, fatigue, and allergies to name a few.
I spent much of my 20’s chronically fatigued with many tests but no diagnosis, I tried to keep up with the ‘normal’ pace of life but always wondered why I couldn’t and would tire so easily. Without a diagnosis I spent the next decade taking my health into my own hands which led me down many natural paths, including making adjustments to diet, mindset and lifestyle.
After seeking support of many knowledgeable therapists, I recently received a diagnosis for hEDS which was a massive relief, and finally over 20 years later has pieced together all of the seemingly random symptoms. I’m pleased to say that now in my 40’s my quality of life has improved since my 20’s, I may not be able to do all the things I’d like to but I’m grateful for where I’ve got to and they quality of life I now have.
I’ve led many teams throughout my career I really understand the value that can be gained by brining groups of people together to share, help and support each other, so becoming an area volunteer coordinator seemed like the obvious thing to do to help people within the North East. I recognise everyone has their own stories and will have been on their own journey, or may just be starting out, and I hope we can grow the Newcastle group into a supportive place for everyone to share and feel supported at whatever stage you’re at. I hope to meet you all near future at the Newcastle support group.
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.
Date: 29th August 2026
Start: 2:00 pm
Finish: 4:00 pm
Venue: Linskill and North Tyneside Community Development Trust Linskill Centre Linskill Terrace North Shields NE30 2AY
Additional info: Hybrid Support group meeting with Nicola - you can come along to the venue or join on the zoom link Venue: Parking: there are spaces onsite for over 100 cars Accessibility: fully wheelchair accessible Nearest metro station: North Sheilds or Tynemouth, both a 10min walk Linskill and North Tyneside Community Development Trust, Linskill Centre, Linskill Terrace, North Shields NE30 2AY
Map: