Ehlers-Danlos Support UK

Fragile Links is the must-have magazine for anyone living with or caring for someone with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD). Sign up by the 31st May to make sure you receive the Summer edition!

"But this weekend we made a plan to build on the good work done to date by the community and to really try and tackle the understanding through a targeted approach to learning and awareness with heathcare professionals." #MakeMayMatter #RaisingAwarenessTogether

Susan said "It's clear there are huge problems within the NHS with waiting times and understanding of complex conditions like #EDS and #HSD in NI.

On Saturday 16th May in the afternoon, members of @ehlersdanlosuk Northern Ireland met. A good turnout of around 20 members attended to hear most importantly from each other about their experiences

Also covered are the benefits and risks of hormone replacement therapy (HRT), and why menopause can worsen #EDS and #HSD symptoms. Watch now: youtu.be/1CA6u6Atng8?si…

New to our YouTube channel this week, is a webinar with Dr @BluesteinLinda Dr Bluestein discusses hormones, #menopause and connective tissue disorders, and explains how estrogen, progesterone, and testosterone impact joint health.

Enter your postcode to email your MSPs and ask them to support action on diagnosis, guidance and care pathways for #EDS and #HSD in #Scotland: edsuk.eaction.org.uk/makemaymatters… #MakeMayMatter #EhlersDanlossyndromes #hypermobility

The Scottish Government has confirmed it is aware of this work and is waiting to see the outcome and any learning that could be applied in Scotland, BUT people with EDS and HSD in Scotland cannot continue to wait while inequitable access to care persists.

📣Members in Scotland: Contact Your MSP in Seconds! Research from the hEDS-START project found that people with hEDS and HSD in Scotland face an average diagnostic delay of around 20 years.

but despite being ready, the pathway has still not been published. We need Members of the Senedd to ask why. Enter your postcode to email your MSs and call for urgent publication of the #EDS and #HSD primary care pathway: edsuk.eaction.org.uk/makemaymatterw… Diolch!

A new NHS pathway is ready to use, but it still hasn’t been published and we need your help. This pathway could help improve diagnosis, increase GP confidence, and reduce the need for patients to travel outside Wales or pay privately for care,

📣Members in #Wales: Contact Your MS in Seconds! People with #EhlersDanlossyndromes and #hypermobilityspectrumdisorders in Wales continue to face long delays, limited support, and barriers to diagnosis and care.

A clinical trial by Bourne et al. (2026) found that while anaesthetic worked at first, it didn’t last as long in people with EDS compared to others: rapm.bmj.com/content/early/… That means some people are left feeling pain when they shouldn’t. #EDSawarenessmonth #healthcare

Many people report that local anaesthetic doesn’t work as expected, meaning they can still feel pain during medical procedures or at the dentist. Some people say it doesn’t work at all, and others find it wears off too quickly or doesn’t fully block pain.

Did you know that local anaesthetic doesn’t always work as expected for people with Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD)?

Become a Fragile Links Member today at: ehlers-danlos.org/membership-acc… #EhlersDanlossyndrome #Hypermobilityspectrumdisorder

Fragile Links is the must-have magazine for anyone living with or caring for someone with a type of Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD). Sign up by the 31st May to make sure you receive the Summer edition!