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 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.

Luton & Dunstable

Monica and Antonia

Contact group

Hi, I’m Monica a 31-year-old personal trainer and life coach, living in Bedfordshire with my partner and our two beloved whippets. Over the past eight years, I’ve lived in several areas across Bedfordshire, giving me a strong connection to the local community I’m proud to serve.

Before founding MPT Personal Training and Life Coaching, I had the honour of representing Great Britain as an international-level ice hockey athlete for 20 years. Sport has always been a huge part of my life, and although I’m now retired from competition, I still enjoy running to stay fit—both for my wellbeing and to help manage my Ehlers-Danlos Syndrome (EDS).

I was diagnosed with EDS at the age of 27, following 15 years of ongoing medical concerns and unanswered questions. Since receiving my diagnosis and being placed under the care of the Royal National Orthopaedic Hospital and Dr. Cohen, I’ve been fortunate to receive excellent support. I’m continually learning how to better understand and self-manage my condition.

As a neurodivergent woman with ADHD and Autism, I know firsthand how challenging the unpredictability of EDS can be. Despite this, I’ve always been proud of my resilience—something others have often described as contagious. This outlook is something I bring to every aspect of my work, and it’s at the heart of my approach as the owner of MPT Personal Training and Life Coaching.

In addition to my business, I’m also an area volunteer for the EDS charity. Through this role, I aim to offer support, encouragement, and understanding to others facing similar challenges. My goal is to create a space where people feel safe to reach out, open up, and be met with kindness and motivation.

As a proud member of both the LGBTQ+ and disabled communities, I believe in fostering an inclusive, compassionate environment for everyone I work with. Whether you’re seeking guidance, strength, or simply someone to talk to, my door is always open. Raising awareness and morale around this often invisible illness is something I care deeply about. Together, we can continue to grow in health, strength, and happiness.

I’m Antonia — writer, wheelchair user, and relentless optimist on the messy days. I live with EDS and Chiari malformation, so I know the wonky days, the waiting rooms, and those “is it just me?” moments. I’m here to be a friendly face you can vent to over tea and biscuits, swap tips with, and laugh with when the admin gets ridiculous.

I started a website in 2024 called Unremarkable Me, a space filled with lived experience, practical tools, and lessons I’ve picked up along the way. It’s where I share my story and create resources to help others like me — all in the hope of making life with chronic illness a little kinder and less confusing.

I’m a proud advocate for tea, biscuits, and cake — the holy trinity of comfort — and for finding a good laugh within the chaos that is life with EDS. I also write and make music, turning my inner monologue into songs about living with chronic illness and raising awareness for EDS and Chiari malformation.

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: 19th September 2026

Start: 11:00 am

Finish: 2:00 pm

Venue: Houghton Hall Park Cafe, Houghton Hall Park, Park Rd North, Houghton Regis, Dunstable LU5 5FU

Additional info: Support group meeting with Monica, everyone welcome, please feel free to bring a friend or family member with you. Refreshments provided.

Map:

More Support

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