Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)
Joined November 2019
- Tweets 1,536
- Following 159
- Followers 3,292
- Likes 3,047
67 Photos and videos
Pinned Tweet
8 May 2020
For #EDS & #HSD Awareness Month we have launched a NEW website with current research & support tools! Check it out!
hedstogether.com
#ehlersdanlossyndrome
#Hypermobilityspectrumdisorders
#myEDSchallenge #myHSDchallenge #raisingawarenesstogether
#IDM2020
#whywedoresearch
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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 🙂 ew23aafc780.myportfolio.com/…
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Apr 23
Helen has lots of fabulous updates about her PhD research supporting people with POTS in this blog
hedstogether.com/dr-helen-ef…
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!
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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
22 Dec 2025
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…
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hEDStogether retweeted
22 Dec 2025
I loved doing this and spreading the symptomatic hypermobile word @TheEDSociety @EdsukNikki @HMSACharity @behnam_liaghat @hEDStogether
22 Dec 2025
Right then,
What were the Top 5 most downloaded podcast episodes of Clinical Communication from 2025?
Let’s see…
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hEDStogether retweeted
1 Apr 2025
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…
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11 Feb 2025
Fabulous to see @GemmaSPearce @SallyPezaro & @ndholliday being celebrated as part of #WomenInScienceDay
We have lots of fabulous women working in #STEM across #hEDStogether projects
hedstogether.com/our-team/
@higo_anna @EftekhariHelen @SabeehaMalek @laurenmpurdy @DrEReinhold
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 🚀👏
ALT Women in STEM collage
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⭐️💻 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…
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hEDStogether retweeted
8 Jan 2025
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!!🌟
7 Jan 2025
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…
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hEDStogether retweeted
7 Jan 2025
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…
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hEDStogether retweeted
7 Jan 2025
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…
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16 Dec 2024
Our fabulous @higo_anna was interviewed for the telegraph recently about hypermobility.
telegraph.co.uk/health-fitne…
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hEDStogether retweeted
17 Oct 2024
Check this out 😃Please share the survey 🙏🏻
app.onlinesurveys.jisc.ac.uk…
@ShoulderGeek1 @theshoulderdoc @thecsp @chrissyholmes15 @DrEReinhold @BendyBrain @JGjanegreenMBE
15 Oct 2024
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-…
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15 Oct 2024
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-…
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hEDStogether retweeted
11 Oct 2024
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
8 Oct 2024
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…
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hEDStogether retweeted
14 Oct 2024
👍 it also includes other older criteria versions like EDS hypermobility type (HT) and EDS type III 😊
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hEDStogether retweeted
11 Oct 2024
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.
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hEDStogether retweeted
26 Sep 2024
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
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hEDStogether retweeted
8 Oct 2024
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…
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hEDStogether retweeted
17 Sep 2024
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!
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hEDStogether retweeted
7 Oct 2024
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
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