Ehlers-Danlos Support UK

*This account is no longer active. See pinned post for how to find EDS UK and access support.*

[Ehlers-Danlos Support UK @ehlersdanlosuk]

This X account is no longer active. You can find EDS UK at https://t.co/e3QXc8L39H along with our Adviceline and Support Groups. You can also find us on the following social media channels:

https://t.co/NhjnhXrWUp
https://t.co/qq9wIByJzQ
https://t.co/bOjsJwq7Rl

[NickyProctor @NickyProctor]

@YorkDisability @Bethany1Handley @ehlersdanlosuk Great hearing Bethany talk about this and her experiences on Saturday Live yesterday (on bbc sounds).

https://t.co/pHJtCxRoyw

[York Disability Week @YorkDisability]

Award-winning disabled author @Bethany1Handley releases book on access to nature https://t.co/u06Ci6FyO2 @ehlersdanlosuk

[Ehlers-Danlos Support UK @ehlersdanlosuk]

What are the differences between hypermobile EDS (hEDS) and vascular EDS (vEDS)? Genetics consultants and counsellors from the NHS Ehlers-Danlos Syndrome National Diagnostic Service explain:
https://t.co/P8X3cPqRow

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Joo is one of our amazing volunteer Area Coordinators, and supports our members at our Woking support group. Joo loves sound therapy to help in relaxation as part of managing her hEDS. What helps you relax?

#MakeMayMatter #EhlersDanlossyndromes #HypermobilitySpectrumDisorders

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Support our lifeline for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and help #MakeMayMatter.

https://t.co/BnYWVzphqC

[Ehlers-Danlos Support UK @ehlersdanlosuk]

"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

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Also covered are the benefits and risks of hormone replacement therapy (HRT), and why menopause can worsen #EDS and #HSD symptoms. Watch now: https://t.co/LBIW26SI3a

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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: https://t.co/Ij4YEP2cPI

#MakeMayMatter #EhlersDanlossyndromes #hypermobility

[Ehlers-Danlos Support UK @ehlersdanlosuk]

📣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.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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: https://t.co/p2oy7eO8Af

Diolch!

[Ehlers-Danlos Support UK @ehlersdanlosuk]

📣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.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

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,