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

Katie Hiskett

katiehiskett@gmail.com

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: November 24, 2018

Start: 2:00 pm

Finish: 4:00 pm

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

Additional info: West Norfolk Disability Counsellor will be attending as the speaker

Map:

Date: November 24, 2018

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 Cumberland

julietcumberland@icloud.com

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.

Suffolk

Grainne Watts

suffolkeds@outlook.com

So here are a few details about myself …

My full name is Grainne Sanchia Watts  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: December 8, 2018

Start: 11:00 am

Finish: 1:00 pm

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

Map:

More Support

Support groups, advice with work, help with benefits and more