The Ehlers-Danlos Support UK (EDS UK) was set up in 1987 to support, advise and inform those living with the Ehlers-Danlos syndromes. We work to minimise the impact of EDS by making its diagnosis, treatment and management accessible to everyone when they need it.
We provide support through local physical and virtual support groups led by trained volunteers and via our freephone helpline. We maintain a website, issue regular newsletters, and publish materials to inform the EDS community, those with a specialist interest in the condition, and the wider public.
What is EDS?
The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy.
This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences.
These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.
Everyone
Contact our Helpline: Our free telephone and email helpline is available to everyone, including people with ED or HSD, their families, friends, carers and healthcare professionals.
Membership: EDS UK Membership is free for everyone for life (needs renewing every two years).
Support Groups: 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.
Guides to Help with Benefits Claims: EDS UK is a professional member of the organisation Benefits and Work, which provides specialist guides to claiming Disability Living Allowance, Personal Independence Payment and Employment Support Allowance.
The Benefits and Work guides are available free of charge to EDS UK members and will be provided via email as downloadable files. To obtain information on the guides available please email stating what you need assistance with.
Support:
Helpline: 0800 907 8518 (9am to 3pm Monday to Friday)
Email: helpline@ehlers-danlos.org
General Enquiries
Phone: 020 8736 5604
Email: info@ehlers-danlos.org
For more information about Ehlers-Danlos Support UK search Ehlers-Danlos Support UK in this directory.
Visit the Ehlers-Danlos Support UK website
Visit the Ehlers-Danlos Support UK Facebook page
