Celebrating EDS UK: A Beacon of Hope and Advocacy
- Antonia Kenny
- 1 hour ago
- 3 min read
By Antonia | @UnremarkableMe – February 2025
Let’s be honest—living with EDS or HSD often feels like walking a tightrope on a windy day, with the NHS as the safety net… that’s full of holes. From dislocations and fatigue to the relentless admin marathon of seeking referrals, we live between pain and paperwork, often without answers. And yet—within that chaos—somehow, a lifeline exists.
That lifeline is The Ehlers-Danlos Support UK (EDS UK).
When everything else feels too complicated, too clinical, or just too indifferent, EDS UK shows up. With resources. With advocacy. With heart. They are the ones turning disconnected voices into a movement—and reminding us that we are not alone in this.
Advocacy in Action: #EnoughIsEnough
In 2023, EDS UK launched the #EnoughIsEnough campaign—a bold and much-needed challenge to the UK government. The goal? To demand proper NHS recognition and services for people living with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) across the UK.
Each nation received its own petition. The message was clear: these conditions are complex, systemic, and urgent—and current care simply isn’t enough.
In July 2023, the UK Government issued a response to the England petition—but it was, to put it bluntly, underwhelming. EDS UK called out this response publicly, emphasising that the proposed Major Conditions Strategy does not reflect the multisystemic reality of life with hEDS and HSD.
Here’s how you can view and support the other #EnoughIsEnough petitions across the UK:
Scotland Petition
Wales Petition
Northern Ireland Campaign Summary
Advocacy isn’t just a buzzword. It’s survival. And EDS UK is fighting the good fight, with all of us behind them.
Real Change in Motion: National Pathway Development
Advocacy is only one side of the coin. EDS UK is also working from the inside out to change care where it begins: within the NHS.
In Wales, they’ve partnered with NHS Wales and the Strategic Clinical Network for Musculoskeletal Care to develop a national care pathway for hypermobility-related conditions. This pathway aims to shorten the diagnostic delay, streamline care, and reduce the all-too-common ping-pong of referrals.
It's not just about process—it's about people. And it’s a sign that when patient voices sit at the table, the future looks brighter.
Shaping Equity: A Fairer Future for Rare Conditions
In July 2022, EDS UK joined a major collaborative effort to help create “A Fairer Future: Towards a More Equitable Delivery of Care for Those with Rare Diseases and Conditions”.
This report shines a spotlight on the systemic inequities faced by those with rare and complex conditions. It asks hard questions: Why does your postcode affect your access to care? Why is recognition of conditions like EDS still so patchy? Why is it still on patients to educate their own doctors?
EDS UK’s own coverage of the project is available here:→ EDS UK – A Fairer Future Report Launch
It’s a sobering, necessary look at how things are—and how they could be, if we keep pushing.
From the Bottom of Our Hearts (and Connective Tissues): Thank You
To the team at EDS UK—thank you. For every document written, meeting attended, symptom sheet created, or comforting reply sent in a moment of need. You are, quite literally, the connective tissue in this community.
You give structure where the system leaves gaps. You bring compassion where bureaucracy brings only silence. And you’ve shown that change is possible when it's powered by lived experience, patience, and persistence.
We see you. We need you. And we are so deeply grateful for you.
If you’d like to support their work or get involved, here’s how:
🔗 Donate to EDS UK
🔗 Become a member or volunteer
🔗 Explore EDS UK’s full resource library
🔗 Learn about hEDS
🔗 Learn about HSD
Because we deserve care that matches our courage.
And with voices like EDS UK behind us, we’ll keep pushing for the recognition, the resources, and the respect our community deserves.