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, 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

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.

Heybridge

No current volunteer

Contact 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.

Hunstanton

Hello I’m Ali.

I live in Norfolk, I am 30 years old and am diagnosed as Vascular Ehlers Danlos Syndrome.
After spending five months in ICU this has really knocked me back, however I’m really fighting back with gym training, and my Assistance Dog.

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 gym, river walks with my dog, training my dog new skills (he is qualified but they learn all their life) and EDS UK research/meetings to better the group.
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, phone, text or Facebook. I am available to be contacted via any of these methods Monday-Friday. Please don’t hesitate to contact me for support.

Date: September 28, 2019

Start: 2:00 pm

Finish: 4:00 pm

Venue: Hunstanton Community Centre, Avenue Road, Hunstanton, PE36 5BW

Map:

Date: November 11, 2019

Start: 2:00 pm

Finish: 4:00 pm

Venue: Hunstanton Community Centre, Avenue Road, Hunstanton, PE36 5BW

Map:

Peterborough(volunteer needed)

We are currently looking for a volunteer Area Coordinator to run support groups in this area. If you are interested in joining please click here to find our more about the role.

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.

Southend-on-Sea

Juliet

Contact group

Hi I’m Juliet, I’m 22 and I live in Rochford, Essex. I’m pleased to be starting a new support group in Southend-on-sea. I was diagnosed with hypermobile EDS in 2015 after a few years of severe symptoms. I love trying to stay active within the limits of EDS and started weight training a year ago. 

 

I hope everyone in the area can come along to the meetings, if you would like to contact me please do so on the email above. 

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 have been an EDS UK member since getting diagnosed in 2009. I have hypermobile EDS. I also have PoTS and co-run a support group called UK Potsies which has over 700 UK only members. I found when I was diagnosed with PoTS 7 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 website forum and fundraised twice in the last 5 years.

I had to give up living in London and working full time as a music agent for opera singers 4 years ago as my health had deteriorated so much. I then took up teaching piano at home as I am a professional musician. Last November 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 have been a member of the Peterborough group myself for a year and although only being able to attend once, I found it immensely reassuring to have others living nearby who relate to me, having made friends for life already. I aim to bring fun, experience and education to the group as Area Coordinator.

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.

Suffolk

Grainne

Contact group

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 them selfs 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 .

Date: July 27, 2019

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

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Date: August 31, 2019

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

Map:

Date: September 28, 2019

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

Map:

Date: October 26, 2019

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

Map:

Date: November 11, 2019

Start: 11:00 am

Finish: 1:00 pm

Venue: All Hallows Church, 320 Landseer Rd, Ipswich, IP3 0EN

Map:

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