EDS Project

Research Project at @UGlosPsych (run by @DrStephensLewis a fellow 🦓 & @elainewalklet )

[EDS Project @project_eds]

@DrSarahBennett @tandfonline @UWEBristol @ProfSheaPalmer @NWalsh_Research @Psychonaught @UWELibrary Excellent!!! Congratulations 🙌🙌🙌

[EDS Project @project_eds]

Today we launched our first EDS learning alliance meeting and can't thank those who attended enough! Great to see so many people interested in the area 🙌💚 Can't wait until our next one!

[Project Dog @ProjectDog1]

Please do keep sharing our 🗣️ shout out for participants....

If you've ever had or worked with dogs, we'd like to hear from you on your perceptions of dog behaviour and reactivity....

⬇️
https://t.co/SJ4xN7jUWz

[EDS Project @project_eds]

Sorry we went MIA.... We've been busy, busy behind the scenes, working through the tremendous data from our participants!

Just a quick update that our first Alliance meeting will be held online on the 3rd of June, where we'll be sharing some preliminary findings.. 🙌

[Dr Gemma Pearce @GemmaSPearce]

A valuable paper summarising people's experiences of joint hypermobility & Ehlers Danlos syndromes. I just sent it to a newly diagnosed friend so they can see they are not alone! #whywedoresearch @DrSarahBennett
@ProfSheaPalmer
Free full text here: https://t.co/ncY1BUqiwN

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Children with #hypermobileEDS / #HSD will be more ‘bendy’ than their peers & this #hypermobility can cause problems. Instability of the joints might lead to dislocations or subluxations, they may suffer from pain, their joints may click, they may fidget. https://t.co/GETa5TxYZT

[Henry Watt @Charlie_Dimmock]

👀💪
'Awareness of the prevalence of joint hypermobility, hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome in healthy young population may contribute prevention of disability.'
https://t.co/fMEBen3kxC

[The Ehlers-Danlos Society @TheEDSociety]

What are your favorite aids or supports for helping day to day with your EDS or HSD symptoms? #LifeHacksMonth

[The VEDS Movement @VEDSMovement]

Dads are such a vital source of support for someone with VEDS. Whether you're a dad, have a dad or just know a dad, you won't want to miss this webinar: https://t.co/jGhaXHaiLz

[Sabeeha Malek, PhD @SabeehaMalek]

Excited to share my first publication! The Beighton Score as a measure of Generalised Joint Hypermobility. With HUGE thanks to my co-authors @DrEReinhold and @GemmaSPearce! Thanks also to @hEDStogether and @ActinDomain for support: https://t.co/XbPP90FBfQ

[EDS Project @project_eds]

Diagnosis can finally allow things to 'make sense'!
#EhlersDanlosSyndrome #qualitativeresearch #hEDS

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Specialist EDS #midwife, Rachel Fitz-Desorgher, discusses how having #EhlersDanlosyndrome or #HypermobilitySpectrumDisorder may impact #pregnancy and labour. There are three new videos in our member's area - join for free https://t.co/pht2YFdndm

[ARMA @WeAreARMA]

Did you know that children are affected by bone, joint and muscle problems too and this can impact children both physically and emotionally?

Read @EmilyEarle5's guest blog for some insight.

See https://t.co/ppjmtamljt

#rheum #rheumedu #rheumatology

[The VEDS Movement @VEDSMovement]

Are you looking for research study participants? We can help you: https://t.co/V9qtkpasOU

[EDS Project @project_eds]

@NHSWatch @ElaineWalklet think a lot of our data would feed into this...

[StrngthFlexHlthEDS @SFHEDS]

Strength/Flexibility/Health/EDS Integrative Wellness Newsletter is out! https://t.co/Jl0i0hgRfe Stories via @ehlersdanlosuk #westlondon #ehlersdanlossyndrome

[A Chronic Voice @AChVoice]

"I decided I was willing to risk having acute reactions for my long term #wellbeing. Luckily, my instructor and agility friends were willing to #support me and learn my #emergency protocol": https://t.co/jkL6PJkOQB @HBMastCells #MCAS #DogTraining