hEDStogether
@hEDStogether
Followers
3K
Following
3K
Media
65
Statuses
2K
Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)
Joined November 2019
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
6
26
69
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
0
5
8
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
hedstogether.com
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 🚀👏
0
4
9
⭐️💻 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
0
4
7
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!!🌟
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
0
7
12
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
1
8
18
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
0
7
11
Our fabulous @higo_anna was interviewed for the telegraph recently about hypermobility. https://t.co/vCkNxUViie
1
4
6
Check this out 😃Please share the survey 🙏🏻 https://t.co/h48IBj702C
@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 🙏 https://t.co/DuNa0yKGOc
1
7
7
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
0
7
11
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 😊 https://t.co/X5leOkXQDh
0
3
7
@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 😊
0
2
3
@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.
2
3
7
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
ehlers-danlos.org
EDS UK invites UK-based GPs and GP trainees to a FREE educational event in the Library of The Reform Club in London this November. We will be welcoming Dr Emma Reinhold, Dr Ben Frankel, Dr Alan Hakim...
2
16
16
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
2
20
24
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!
eventbrite.com
Enhance your understanding of Ehlers-Danlos Syndrome and hypermobility spectrum disorders.
3
31
52
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
0
4
11
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 https://t.co/h48IBj7xSa
3
30
32
NEW page on website! Surveys completed by people with hEDS/HSD (&similar) & healthcare professionals on their experiences & care from pregnancy to post-partum. THANK YOU to all who took part! https://t.co/cCu6P4B2aY
@GemmaSPearce @DrEReinhold @SallyPezaro @LMBell_ @Paul_NTDC
0
4
4
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! https://t.co/jiDkL4ATmg
@higo_anna
1
1
4
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! https://t.co/jiDkL4ATmg
@higo_anna
0
14
25