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 50 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.

Basildon

Hi, I’m Sandi and I am the area coordinator for Basildon & Burnham-on-Crouch and the surrounding areas.

March 2022 my sister was diagnosed with hEDS and is currently awaiting genetic testing to see if she has more than one time, through my sisters journey I have seen the lack of awareness and support for the condition.

In May 2023 I took part in the Dazzle Walk 2023, walking 140 miles throughout May raising £540 for Ehlers-Danlos Support UK. After completing this achievement, I wasn’t ready to stop and wanted to continue supporting those with HSD/EDS, so decided to sign up for the AC role.

I love taking my dogs for long walks, spending time baking cakes and brownies and expanding my knowledge through learning activities and meeting new people. I’m really looking forward to starting my role as AC, so I can continue to support those with EDS.

Burnham on Crouch

Hi, I’m Sandi and I am the area coordinator for Basildon & Burnham-on-Crouch and surrounding areas.

March 2022 my sister was diagnosed with hEDS and is currently awaiting genetic testing to see if she has more than one time, through my sisters journey I have seen the lack of awareness and support for the condition.

In May 2023 I took part in the Dazzle Walk 2023, walking 140 miles throughout May raising £540 for Ehlers-Danlos Support UK. After completing this achievement, I wasn’t ready to stop and wanted to continue supporting those with HSD/EDS, so decided to sign up for the AC role.

I love taking my dogs for long walks, spending time baking cakes and brownies and expanding my knowledge through learning activities and meeting new people. I’m really looking forward to starting my role as AC, so I can continue to support those with EDS.

Cambridge

Lyndie Zollinger

Contact group

Hi everyone,

I’m Lyndie.  I’m the area coordinator for Cambridge.

I finally got my EDS diagnosis in May of last year after many years of misdiagnosis.

I’m a PhD student studying the biomechanics of different joint injuries in dogs and humans.

I love dogs and live in Cambridge with my husband and my dog Elli, who is currently training to be my assistance dog.

I’ve loved the support I’ve found in online EDS communities and look forward to working more with my fellow Cambridge EDSers.

Chelmsford

Lauren

Contact group

Hi I’m Lauren and I am the Area Coordinator for Chelmsford. I was diagnosed with hEDS in 2013 after a whirlwind diagnostic journey. Having had my health continuously decline over the last couple of years, I decided it was finally the right time to stop working full-time and focus more on the things that make me happy (crafting, time with friends and family, cooking etc.) as well as having more time to dedicate to looking after my health. I am looking forward to using my AC role to support and encourage others with EDS, just as EDS UK has done for me in the past.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group. Please email nikki@ehlers-danlos.org if you are interested in volunteering.

Colchester

I’m Hazel and I was diagnosed with EDS Hypermobile Type, along with various comorbidities, when I was 19 after multiple doctor and specialst appointments.

I live in Colchester with my husband and 2 dogs. Currently, I’m a part time psychology student and, when I have the energy for it, I enjoy reading, writing, gaming, and photography.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Harlow

Hi, I’m Emma and I am the Area Coordinator for Harlow. I was diagnosed with EDS back in 2013, after a very long road of misdiagnosis.

In 2013, I faced the biggest challenge of my life so far and that was to give birth to my daughter.

She is by far my best achievement to date although since having her my health as deteriorated rapidly.

I love to craft, read and spend time making memories with my family, I love to be able to help support and encourage others so I am especially excited to begin my role as AC

You can join the East of England Facebook groups here (you need to be a member of EDS UK)

Ipswich

My name is Sam and I was diagnosed with hEDS 11 years ago.

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group

Kings Lynn

Hannah

Contact group

Hello! My name’s Hannah and I am the Area Coordinator for King’s Lynn, Norfolk. Like many, it was only after many years bouncing between different specialists that I was eventually diagnosed with EDS… and suddenly it all made sense!

A little about me: I work in the education sector and also volunteer with an animal welfare charity at the weekends. I didn’t always live in Norfolk, so any chance I get I absolutely love to explore the beautiful Norfolk coastline. During those times where I need to rest and recover from the general day-to-day, I love to listen to audiobooks and spend time with my animals.

Upon receiving my EDS diagnosis, I felt quite overwhelmed and so turned to connect with others who are part of the Ehlers-Danlos Support UK community. Immediately I felt so welcomed and it was fantastic to actually connect with others who just ‘got it’. I’m so thrilled to hold the role of Area Coordinator in the hope that I too can help offer that support and encouragement to anyone with and/or effected by Ehlers-Danlos Syndrome. I very much look forward to getting to know you all!

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Lowestoft

Natasha

Contact group

Hello my name is Natasha.

I look forward to welcoming you all in the lowestoft community.

I have heds diagnosed 2020 at the age of 29 by rheumatology in Gorleston amongst other health conditions.

In my down time I enjoy spending time with my cat

Norwich

Hello I’m Meg, and I’m your Area Coordinator for Norwich. I was diagnosed with hEDS in 2015 and I am passionate about raising awareness and helping others with the same condition to feel less alone. I live out in the countryside with my boyfriend and our pet dog Waggs who is the best companion I could ask for! I enjoy spending time with my family and friends and also in the evenings love to snuggle up on the sofa and watch Greys Anatomy or Gilmore Girls! I’m really excited to meet and get to know you all!

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Peterborough

Vacancy

Contact group

Vacancy

Members of EDS UK are welcome to join their regional closed members group on Facebook. Visit us here to join your regional group.

Southend

Hi my name is Dawn, I haven’t been formally diagnosed with EDS yet but I am on my journey.

I have been working at WDC Physiotherapy as a Client Care Coordinator for nearly two years and recently we have poured our hearts and souls in to helping people with EDS and Hypermobility so I have a fountain of knowledge to pull from.

I have a passion to raise awareness in any way I can to assist people with EDS to be heard, seen and most of all supported.

I have been described as very caring and a good listener, so I am always ready with a cup of tea – (I can’t guarantee it’s perfectly made) and a smile should anyone need it.

I am looking forward to meeting you all and helping in any way I can.

 

Facebook group East of England: click here

Thetford

Coming soon!

Contact group

More Support

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