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.

Bexhill-on-Sea

None currently in position

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.

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.

Brighton

Hello everyone,

I am late diagnosed hypermobile EDS and have other associated diagnoses. Despite several dislocations and party tricks growing up, I was unaware that I had a condition as it did not stop my lifestyle until I became older.  Gradually my shoulder dislocations increased and the party tricks added to my love of certain sports and dance which caused more and more pain and  multiple injuries.  It wasn’t until about 2003 undergoing two knee ops that the surgeon first mentioned ‘ooh you’re bendy’.

I brought up my two boys single handed and, my eldest is autistic. During my career as a Local Authority advisory teacher and lead for Autism Educationalist for the NAS, Assistant Headteacher and lead for the autism education trust across London, I came across many pupils and students who had poor tone, proprioception challenges and were highly flexible.  Personally, I had many medical and allied professionals to help me over the years but with sometimes questionable practice.  I was disbelieved in two areas this led to my hard earned career ending in 2015.

I have tried to use my skills and expertise sporadically  as a Trustee to Carers Support West Sussex, Autism Education Trust, co-production member of Social Care Institute of Excellence. I am also working to improve the working prospects for those with autism/neurodiversity in the local area. I have also become an advocate in some areas for visible and invisible disability transportation and aim to help those with hypermobility in education.

Thanks, Jane.

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.

Crawley

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 everyone,

I am late diagnosed hypermobile EDS and have other associated diagnoses. Despite several dislocations and party tricks growing up, I was unaware that I had a condition as it did not stop my lifestyle until I became older.  Gradually my shoulder dislocations increased and the party tricks added to my love of certain sports and dance which caused more and more pain and  multiple injuries.  It wasn’t until about 2003 undergoing two knee ops that the surgeon first mentioned ‘ooh you’re bendy’.

I brought up my two boys single handed and, my eldest is autistic. During my career as a Local Authority advisory teacher and lead for Autism Educationalist for the NAS, Assistant Headteacher and lead for the autism education trust across London, I came across many pupils and students who had poor tone, proprioception challenges and were highly flexible.  Personally, I had many medical and allied professionals to help me over the years but with sometimes questionable practice.  I was disbelieved in two areas this led to my hard earned career ending in 2015.

I have tried to use my skills and expertise sporadically  as a Trustee to Carers Support West Sussex, Autism Education Trust, co-production member of Social Care Institute of Excellence. I am also working to improve the working prospects for those with autism/neurodiversity in the local area. I have also become an advocate in some areas for visible and invisible disability transportation and aim to help those with hypermobility in education.

Thanks, Jane.

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.

East Horsley

Jacqui

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. 

Hi, my name is Jacqui.

I’m a stay at home Mum with two teenage boys. My eldest son George has Vascular EDS. When I’m not ferrying the boys around I love to cook, having done a cordon bleu course many (many) years ago. I also recently went on a cake decorating course and am enjoying making celebration cakes for my friends and family.

Once a year I hold a Christmas fair to raise funds for EDS UK and I have also done a couple of sponsored runs for them. This has put me in touch with a few people who have EDS or are parents of children with it and I can see the benefit of the support and friendship that we can offer each other. I am also on Facebook and when George was hospitalised last year with a collapsed lung, the advice and support that I got from the Facebook forums was invaluable. So I am looking forward to taking on the role of Area Coordinator for Surrey and hope that we can grow our network of support and raise a bit of money at the same time.

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.

More Support

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