Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)
Joined November 2019
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hEDStogether retweeted
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
3rd.
Is @higo_anna on discussing hypermobility spectrum disorder & hEDS with patients.
I’ve literally had people tell me they’ve diagnosed HDS/hEDS from this episode.
Shout out to @physiojack for helping spread this.
open.spotify.com/episode/0ob…
hEDStogether retweeted
I loved doing this and spreading the symptomatic hypermobile word @TheEDSociety @EdsukNikki @HMSACharity @behnam_liaghat @hEDStogether
hEDStogether retweeted
NEW! Free fully accessible paper showing the results of running the rehabilitation intervention with and for people with POTS #posturalorthostatictachycardiasyndrome #feasibility #RCT
bmjopen.bmj.com/content/15/2…
hEDStogether retweeted
⭐️💻 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: hypermobility.org/event-deta…
hEDStogether retweeted
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
doi.org/10.1016/j.ijnurstu.2…
hEDStogether retweeted
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
app.onlinesurveys.jisc.ac.uk…
hEDStogether retweeted
Check this out 😃Please share the survey 🙏🏻
app.onlinesurveys.jisc.ac.uk…
@ShoulderGeek1 @theshoulderdoc @thecsp @chrissyholmes15 @DrEReinhold @BendyBrain @JGjanegreenMBE
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 🙏
hedstogether.com/annas-blog-…
hEDStogether retweeted
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
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 😊
app.onlinesurveys.jisc.ac.uk…
hEDStogether retweeted
👍 it also includes other older criteria versions like EDS hypermobility type (HT) and EDS type III 😊
hEDStogether retweeted
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: ehlers-danlos.org/news/a-fre… #MedTwitter #MedEd #GPs #Hypermobility
hEDStogether retweeted
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 😊
app.onlinesurveys.jisc.ac.uk…
hEDStogether retweeted
eventbrite.com/e/ehlers-danl…
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!
hEDStogether retweeted
Research into conservative management for hEDS/HSD with shoulder symptoms is severely lacking. Your participation will help shape future research 🙏.
#HSD #hEDS #shoulders
@GemmaSPearce @behnam_liaghat @jason_tallis @ProfSheaPalmer @DrEReinhold @ehlersdanlosuk @HMSACharity
hEDStogether retweeted
Are you hEDS/HSD experiencing shoulder symptoms and living in the UK? Please take our 20minute survey exploring experiences and perceptions to the use of specialist orthotic clothing known as Dynamic Elastomeric Fabric Orthoses (DEFO). Please share and RT
app.onlinesurveys.jisc.ac.uk…
hEDStogether retweeted
I canNOT wait to go through this!!!
I’m TOO excited 😆💞🎉🥰💃🏼
The project page about Anna Higo's PhD on the hypermobile shoulder has been updated!
A review paper has been published and ethics has now been approved for a survey that will go live soon so watch this space to take part!
hedstogether.com/projects/su… @higo_anna
hEDStogether retweeted
Shoulder symptoms in hEDS/HSD are common yet significant gaps in knowledge remain.
This NEW paper reviews what we currently know about non-surgical interventions like exercise, taping and compression garments.
sciencedirect.com/science/ar…
First publication for @higo_anna's PhD 👏
hEDStogether retweeted
New evidence based clinical guidelines for the management of hEDS & HSD during #pregnancy #birth published in @PLOSONE this May #EDS awareness month: #MyEDSChallenge thx to @TheEDSociety & team: journals.plos.org/plosone/ar… Pls RT @Asher_Wolf @LaraBloom @hEDStogether @ehlersdanlosuk
hEDStogether retweeted
Coventry University: Exploring the use of DEFO for shoulder symptoms in patients with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD).
@ProfSheaPalmer @higo_anna @GemmaSPearce @TheEDSociety
hEDStogether retweeted
This outstanding paper “The Beighton Score as a measure of generalised joint hypermobility” by @SabeehaMalek @GemmaSPearce and @DrEReinhold should be mandatory reading! 🧬
#hypermobility #EhlersDanlos #EhlersDanlosSyndrome
ncbi.nlm.nih.gov/pmc/article…
