hEDStogether

Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)

[hEDStogether @hEDStogether]

For #EDS & #HSD Awareness Month we have launched a NEW website with current research & support tools! Check it out!
https://t.co/s9NPpJrJvB

⁠#ehlersdanlossyndrome
#Hypermobilityspectrumdisorders
#myEDSchallenge #myHSDchallenge #raisingawarenesstogether
#IDM2020
#whywedoresearch

[hEDStogether @hEDStogether]

We have some very exciting news!

We have launched a new research project!

Are you #pregnant or #Postnatal and living with #hypermobility in the UK?

Or are you UK-based #physio treating hypermobility during or after pregnancy?

Find out more here 🙂 https://t.co/NbgJUfxnQD

[hEDStogether @hEDStogether]

@GemmaSPearce @UKPoTS @BlackoutsTrust @DrSarahBennett @UHCW_RandD @TheBHF

[hEDStogether @hEDStogether]

Helen has lots of fabulous updates about her PhD research supporting people with POTS in this blog

https://t.co/o6cP0fP0ti

You can access a full version of her completed PhD thesis free online.

See Helen's new publications. 🥳

More publications to come so watch this space!

[Dr Gemma Pearce @GemmaSPearce]

The fantastic @higo_anna in the top 5 most downloaded 2025 Clinical Communication podcast episodes with @BWhybrowPhysio 🥳

Brilliant episode and highly recommend a listen 😊

@hEDStogether

[Anna Higo @higo_anna]

I loved doing this and spreading the symptomatic hypermobile word @TheEDSociety @EdsukNikki @HMSACharity @behnam_liaghat @hEDStogether

[Dr Gemma Pearce @GemmaSPearce]

NEW! Free fully accessible paper showing the results of running the rehabilitation intervention with and for people with POTS #posturalorthostatictachycardiasyndrome #feasibility #RCT

https://t.co/7WOTvJv2Ed

[hEDStogether @hEDStogether]

Fabulous to see @GemmaSPearce @SallyPezaro & @ndholliday being celebrated as part of #WomenInScienceDay

We have lots of fabulous women working in #STEM across #hEDStogether projects

https://t.co/MJevNKTrrD

@higo_anna @EftekhariHelen @SabeehaMalek @laurenmpurdy @DrEReinhold

[Coventry University Research and Innovation @CovUniResearch]

This #WomenInScienceDay, we’re applauding our amazing women researchers in #STEM! 👩‍🔬✨

We're continually inspired by how they are breaking barriers. Past & present, Coventry's women in science shine 🌟

Keep inspiring us - we couldn't be prouder to celebrate you all 🚀👏

[PoTS UK @UKPoTS]

⭐️💻 Webinar tomorrow evening - Ask the Experts 💻⭐️

Tomorrow evening the @HMSACharity are hosting a free webinar with #PoTS expert Nurse @EftekhariHelen and expert Occupational Therapist @JBOccyTherapy.

Please see further details & how to sign up here: https://t.co/Ru7CrSixlK

[Dr Sarah E. Bennett @DrSarahBennett]

Fabulous new open access work by @EftekhariHelen @GemmaSPearce @sophie_stan2 and Kate Seers in partnership with @hEDStogether and @UKPoTS 🎉🥳The first study to provide an in-depth understanding of the experiences of both people with #POTS and health professionals!!🌟

[Dr Gemma Pearce @GemmaSPearce]

New publication! Free open access to all 😃

POTS is starting to get better recognition now it is associated with Long COVID but there is still not appropriate or consistent healthcare provided system wide.

Read more here
https://t.co/FYuv0N0A5L

[Dr Gemma Pearce @GemmaSPearce]

Our survey on hypermobility and the shoulder is closing soon. This is a final push so please do take part and/or share! :)

Participants need to be 18+ in UK with a hypermobile diagnosis like hEDS, HSD, EDS type III, EDS-HT, JHS.

Find out more here
https://t.co/X5leOkXQDh

[hEDStogether @hEDStogether]

Our fabulous @higo_anna was interviewed for the telegraph recently about hypermobility.

https://t.co/vCkNxUViie

[Anna Higo @higo_anna]

Check this out 😃Please share the survey 🙏🏻

https://t.co/h48IBj702C

@ShoulderGeek1 @theshoulderdoc @thecsp @chrissyholmes15 @DrEReinhold @BendyBrain @JGjanegreenMBE

[hEDStogether @hEDStogether]

Check out Anna Higo's blog with some fantastic news! @higo_anna

In the blog she summarises a recent publication on shoulder treatments for hypermobility

& launches a NEW SURVEY!

Have a look, share with others and take part 😁❤ THANK YOU 🙏
https://t.co/DuNa0yKGOc

[limbostate @limbostate1]

There's this new study which is for EDS and HSD with shoulders. My daughter's shoulder is always on the move😆
If anyone wants to do it @SEDSConnective @TheEDSociety @Dysautonomia @CrohnsColitisUK

[Dr Gemma Pearce @GemmaSPearce]

@stickmancrips @limbostate1 @higo_anna @hEDStogether @behnam_liaghat @ProfSheaPalmer @jason_tallis @DrSarahBennett @SabeehaMalek @ehlersdanlosuk @TheEDSociety 👍 it also includes other older criteria versions like EDS hypermobility type (HT) and EDS type III 😊

[Stickman Communications ltd @stickmancrips]

@limbostate1 @GemmaSPearce @higo_anna @hEDStogether @behnam_liaghat @ProfSheaPalmer @jason_tallis @DrSarahBennett @SabeehaMalek @ehlersdanlosuk @TheEDSociety There are loads of possible diagnostic terms - listing them all would take up many characters, and probably still not cover all of them! - symptomatic hypermobility, jhs, hsd, bjhs, possible connective tissue disorder, heritable disorder of connective tissue……etc etc.

[Ehlers-Danlos Support UK @ehlersdanlosuk]

EDS UK invites UK-based GPs and GP trainees to a FREE educational event in London this November. The event will focus on how to spot hypermobility-related conditions in Primary care: https://t.co/Wovspe1P3M #MedTwitter #MedEd #GPs #Hypermobility

[Dr Gemma Pearce @GemmaSPearce]

Do you have hypermobile #EhlersDanlosSyndrome or a similar diagnosis?

Do you have issues with your shoulder?

Are you an adult living in the UK?

Please complete this survey to let us know your experience & if you might want shoulder support or not 😊
https://t.co/X5leOkXQDh

[Emma Reinhold @DrEReinhold]

https://t.co/5T4Fwd80kN
Announcing the most exciting opportunity for GPs this year!
[Drumroll] @ehlersdanlosuk are holding an afternoon event for FREE (thanks to a generous donor). I'm chairing alongside an amazing faculty. Workshop-based practical learning by GPs for GPs!