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 for a Big Lottery Fund grant through the National Lottery which helps pay for the meetings, training of our volunteers and much more.

Clacton-on-Sea

Vacant

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

There is currently a volunteer vacancy for this area. Please contact nikki@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

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

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.

Essex

Emma Plunkett

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

My name is Emma and I’m a retired teacher for children with severe and complex learning disabilities. At the start of 2017 my life changed dramatically when I became physically unable to work due to severe fatigue and chronic pain. After three years of uncertainty I was diagnosed with Hypermobile Ehlers Dhanlos Syndrome (hEDS) by Prof. Rodney Grahame in January 2020 and I began my journey to recondition my body to get the best quality of life I’m able to achieve. I also have Postural Tachycardia Syndrome (a dysfunction of the autonomic system), chronic urticaria (otherwise known as skin that like to overreact to thing!) and I am autistic.

I enjoy writing about things that are important to me and have found both online groups and the EDSUK virtual meet-ups incredibly helpful as I’ve been finding my way through learning how to manage my EDS effectively.  When I discovered there wasn’t an Area Coordinator in place for Essex I decided to take on the role as I’ve found the support of others with similar experiences to be an essential part of learning to live with and manage my EDS and so I wanted to facilitate that same support for those living nearby.  I’ve also found that, now I have a diagnosis and some idea of what the future may bring, I need to find ways that I can use my skills from teaching and to continue to support others in ways that are manageable with my new life. I’m looking forward to building the EDSUK community in Essex; supporting local members and creating opportunities for us all to learn from and to support each other.

When I’m not feeding/stroking my cat Daisy, or resting having done too much of an activity (I’m well versed in the science of pacing, just not always that great at putting it into practise!), I enjoy crochet and love to make things for my friends and family, as well a the occasional item for myself.  Whilst I’m sometimes frustrated by projects taking a long time to complete, as I’m only able to crochet for a short period with lots of breaks on some days, and not at all on many others, I’m gradually getting used to it and ease my frustration by starting new projects – which means I have far to many things in progress at once! I also write blogs and product reviews for Access Your Life which is a disability lifestyle website where people can access completely unbiased reviews of equipment, share their own experiences with different items and also find or re-home specialist equipment. This is something I never expected I would do, as I’ve never considered myself a writer, but I’ve found that writing about my experiences with disability and my passion for disability rights has led me to this new venture and it’s something I’m looking forward to building upon in the future.

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

online eds uk support group meetings

Online meeting

Date: November 13, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Support group meeting for all members of East of England and the South East welcome.

online eds uk support group meetings

Online meeting

Date: November 19, 2020

Start: 8:00 pm

Finish: 9:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

A place for all parents to come together for support. All members of East of England and the South East welcome.

Heybridge

Vacant

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

There is currently a volunteer vacancy for this area. Please contact joanne@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

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

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.

Norfolk

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

Hello I’m Ali.

I live in Norfolk, I am 32 years old and am diagnosed as Vascular Ehlers Danlos Syndrome.
After spending five months in ICU this had really knocked me back a few years ago; but a few years gym training I’m  really fighting back.

My Assistance Dog has encouraged me to get out more and gain my Independence back. I also have POTS VVS which my Assistance Dog also detects in me, so I have seen a large improvement since having him; and also have a rare condition where my organs shut down very quickly.

I also have a cat who alerts me for my POTS and preventing my vEDS injuries.
I don’t really have any hobbies apart from beach walks with my dog, training my dog new skills (he is qualified but they learn all their life), EDS UK research/meetings to better the group; and of course child groups.

I am a single parent to a newborn baby, who my assistance dog adores, and we have seen positive changes to protection; he does love and adore and myself so only right he would with my baby too.

I wanted to start the role as an Area Coordinator as I see too often that Norfolk is so rural and forgotten about, with many different conditions; but having such a difficult time in ICU I wanted to give something back and support those who may be going through something similar.

I offer support via email, text or Facebook. Please don’t hesitate to contact me for support; but please be aware I have a young baby so delays likely.

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

 

online eds uk support group meetings

Online meeting

Date: November 13, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Support group meeting for all members of East of England and the South East welcome.

online eds uk support group meetings

Online meeting

Date: November 19, 2020

Start: 8:00 pm

Finish: 9:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

A place for all parents to come together for support. Members of all East of England and South East areas welcome.

Peterborough

Penny Lanning

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

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

online eds uk support group meetings

Online meeting

Date: October 29, 2020

Start: 6:30 pm

Finish: 8:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Peterborough Support Group Meeting with Penny

online eds uk support group meetings

Online meeting

Date: November 12, 2020

Start: 6:30 pm

Finish: 8:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Peterborough Support Group Meeting with Penny

online eds uk support group meetings

Online meeting

Date: November 13, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Support group meeting for all members of East of England and the South East welcome.

online eds uk support group meetings

Online meeting

Date: November 19, 2020

Start: 8:00 pm

Finish: 9:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Meeting for parents in the East of England and South East with children who have EDS/HSD or who have EDS/HSD themselves

online eds uk support group meetings

Online meeting

Date: November 26, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Living Alone Support Group with Liz

Southend-on-Sea

Vacant

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

There is currently a volunteer vacancy for this area. Please contact joanne@ehlers-danlos.org if you are interested in finding out more about being a volunteer.

Please check out other local groups in your region for meetings and support. Our East of England group run regular regional meetings that members are welcome to join. Visit us here to look at upcoming dates.

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

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.

St Neots

My name is Liz and I live in Cambridgeshire. I’m originally from Bedfordshire and moved here in 2014. I’ve been married to Adam for 3 years and have 2 cats called Moe and Alys, who I love to bits!

I have been an EDS UK member since getting diagnosed in 2009 and an Area Coordinator since 2015. I have hypermobile EDS diagnosed by Prof Grahame. I also have POTS and co-run a support group called UK Potsies which has over 1,000 UK only members. I found when I was diagnosed with POTS 12 years ago, that there was no support for the emotional, social and ‘what to do next and what to expect’ side of things. I love that EDS UK is so caring and I have sought advice many times from the support groups and fundraised many times in the last 11 years. I had to give up living in London and working full time as a PA at a music agency for opera singers 9 years ago, as my health had deteriorated so much. I then took up teaching piano at home as I am a professional musician. In 2015 I had to stop teaching as I have many issues with my spine including a slipped disc and possible chiari. Like most people with EDS, I have many other related illnesses and a wealth of experience and hope to share and pass that on to others. I was a member of the Peterborough group myself for a year and then set up my own group in St Neots. I am currently helping out the Peterborough group and covering for other groups in the area whilst the Area Coordinators take a break.

In my spare time I love composing music, playing the piano, learning BSL and I’m a total nerd for all things London Underground. I also build websites and created Hospital Genie and Railway Genie.  I created these with the idea of keeping people of all disabilities in mind to provide up to date access and facilities information from people who’ve actually been to and experienced the places for themselves.

I find it immensely reassuring to have others with EDS living nearby who relate to me, having made friends for life already. I aim to bring fun, experience and education to the group as an Area Coordinator

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

online eds uk support group meetings

Online meeting

Date: October 23, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Living alone support meeting

online eds uk support group meetings

Online meeting

Date: November 5, 2020

Start: 3:00 pm

Finish: 4:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

St Neots Support Group Meeting

online eds uk support group meetings

Online meeting

Date: November 13, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Support group meeting for all members of East of England and the South East welcome.

online eds uk support group meetings

Online meeting

Date: November 19, 2020

Start: 8:00 pm

Finish: 9:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Meeting for parents in the East of England and South East with children who have EDS/HSD or who have EDS/HSD themselves

online eds uk support group meetings

Online meeting

Date: November 26, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Living Alone Support Group

Suffolk

Grainne

Contact group

Please note: due to the current situation with Covid-19 we are moving all support group meetings online using the Zoom platform for the timebeing. 

So here are a few details about myself 

My full name is Grainne I am 49.

I am a full time mum to my daughter Xanthia 18 and my son Daniel 21.

My daughter has EDS-HT ( HEDS ) Diagnosed by Professor Rodney’s Grahame .she also has a diagnosis of FND/FMD ( functional neurological movement disorder),Chronic pain , anxiety, migraine, Irlen Syndrome, fatigue and has learning difficulties and uses a powered wheelchair when out to help with pacing and walking distance she is currently studying hair and beauty at Suffolk new college in Ipswich.

My son has a diagnosis of BJHMS (Heds) given locally by hospital rheumatologist his symptoms are  Fatigue, pain, migraine, anxiety, legs that can give out when they are weak and fatigued with him collapsing he is also a powered wheelchair user to help with pacing and walking distance he is currently at Essex university studying modern history and  criminology.

So I have had to deal with many aspects of EDS and its other associated symptoms.

So it would be very exciting for me to be able to now use my knowledge and skills that I have found with supporting my children with helping others who find themselves in the same position something I have been doing on social media for some years now.

I look forward to hearing from you all soon as to how I can support 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

online eds uk support group meetings

Online meeting

Date: November 13, 2020

Start: 7:30 pm

Finish: 9:00 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

Support group meeting for all members of East of England and the South East welcome.

online eds uk support group meetings

Online meeting

Date: November 19, 2020

Start: 8:00 pm

Finish: 9:30 pm

Zoom meeting link: Click here to join

Additional info: Please ensure you read our online support group meeting policy and privacy policy before attending. The online support group policy is particularly important as it sets out guidelines for how the meeting will take place and things you should consider before attending an online support group.

A place for all parents to come together for support in the East of England and South East areas

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