The Ehlers-Danlos Support UK is the UK’s leading charity supporting people with Ehlers-Danlos syndrome and hypermobility spectrum disorder. May is the month dedicated to raising awareness about Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD).
These often misdiagnosed conditions affect connective tissues throughout the body, impacting joints, skin, blood vessels, and various organs. If you’ve never heard of EDS or HSD before, you are not alone.
What is Ehlers-Danlos syndrome?
The Ehlers-Danlos syndromes (EDS) are a group of 13 distinct genetic conditions that affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping them separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks.
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.
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Because collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, many of which are 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.
Community stories of EDS
Stories from our community are powerful and consistent. For most people, diagnosis is delayed, sometimes for decades.
People told us about symptoms beginning in childhood — joint instability, pain, fatigue, and gastrointestinal issues — that were never recognised as part of a wider condition. Instead, symptoms were treated in isolation. It can take 10 to 23 years to receive a diagnosis of EDS or HSD, one of the longest diagnostic delays in medicine. Many members said that when they were finally diagnosed, clinicians described it as “obvious”.
“Every consultant I have seen since has commented on how obvious it is that I have it.”
EDS and HSD are complex, multi-system conditions. They can affect joints, pain, fatigue, digestion, cardiovascular function, the immune response, and more — often alongside PoTS, ME/CFS, mast cell activation, and other overlapping conditions. Yet the NHS is not well structured to manage complexity.
“How can this work in a 10-minute GP appointment covering one issue? Conditions like this need a holistic view — and that’s not possible.”
Many members described not being believed.
“I was labelled a hypochondriac… those words followed me for years.” “They said they couldn’t see anything wrong — but I was in severe pain.”
Invisible illness remains poorly understood not only in healthcare but also in wider systems. One family described a devastating experience in which a young woman with EDS faced a fraud investigation because she “looked fine”.
EDS UK supports people across the UK by providing a free advice line, accredited and reliable information on our website, support groups both in person and online, and over 350 meetings a year.
We have an amazing webinar series and a YouTube channel filled with management videos by experts in their field. We support and promote research and campaigns on members’ behalf across all devolved nations. In Kent and Surrey, we have really active peer support groups, run by trained volunteers in Medway, Thanet, Maidstone, Hastings, Woking, and Guildford.
Change for people with EDS
Over the past year, something powerful has happened.
People living with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and associated conditions have come together not only to share their experiences but also to drive change.
Through more than 3,500 e-actions reaching 98% of all MPs, our community ensured that these conditions could no longer be ignored. Our collective effort and collaboration as one of the founder members of the Overlapping Illness Alliance led directly to parliamentary drop-ins in November 2025 and the Westminster Hall debate on 26 March 2026.
EDS UK is leading the way – working across all four nations to build better diagnosis pathways and improve access to care. Our MP briefing made this clear: without integrated, cross-specialty care, patients will continue to fall through the gaps.
What you can do for people with EDS
This year, we’re asking our members and the community to get involved and help raise awareness of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
If you would like to get involved, you can fundraise for us, make a donation or follow us on social media and share our campaigns @ehlersdanlosuk
£15.00 could help us answer a call from someone who suspects they may have EDS or HSD, answer their questions, and give them the confidence to push for a diagnosis.
£10.00 a month for a year could help us respond to 12 emails from young people who are newly diagnosed with EDS or HSD, providing tailored support, guidance and signposting at a time of uncertainty.
£30.00 could help us provide support for people experiencing worsening symptoms, making debilitating symptoms such as extreme pain and severe fatigue easier to cope with.
Every action helps us move closer to fairer, faster diagnosis and better support for everyone living with EDS and HSD.
We couldn’t do it without you.
Adviceline: Tuesdays and Fridays 9am-4pm 0800 907 8518
Find a local support group: https://www.ehlers-danlos.org/support
You can donate here: https://donate.ehlers-danlos.org
