@disabilisaur @ajplus Totes agree. https://t.co/uitufb9qOG
@audreyrsutton @ajplus I agree on the 1:500 👍 The old numbers of 1:5,000 prevalence for hEDS were based on a simple GUESS decades ago in one textbook. It’s what TEDS push. It’s wrong. 1:500 is the latest and best data done by @DrEReinhold et al. https://t
Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison @BMJ_Open https://t.co/uitufb9qOG
@quallabound @audreyrsutton @ajplus Yes, it passed peer review. The only study ever on the diagnosed prevalence of #EDS. True prevalence is much higher - estimated to be in the range of 0.75-3.4%. The 2017 #hEDS criteria are being revised as they do not st
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @DrEReinhold: @kaylejh Here is how #NotRare #EDS/#HSD are (and this is only people who have managed to get a diagnosis written in their…
RT @DrEReinhold: @kaylejh Here is how #NotRare #EDS/#HSD are (and this is only people who have managed to get a diagnosis written in their…
RT @DrEReinhold: @kaylejh Here is how #NotRare #EDS/#HSD are (and this is only people who have managed to get a diagnosis written in their…
RT @DrEReinhold: #sapcasm I would have liked to submit @JCDemmler and my work on the topic of #EDS using a large primary care database. We…
RT @Be_Kinderr: 💥”Diagnosed point prevalence of 194.2 per 100,000...or roughly 10 cases in a practice of 5000 patients... Conclusions EDS a…
RT @Be_Kinderr: 💥”Diagnosed point prevalence of 194.2 per 100,000...or roughly 10 cases in a practice of 5000 patients... Conclusions EDS a…
RT @DrEReinhold: #sapcasm I would have liked to submit @JCDemmler and my work on the topic of #EDS using a large primary care database. We…
RT @DrEReinhold: #sapcasm I would have liked to submit @JCDemmler and my work on the topic of #EDS using a large primary care database. We…
RT @DrEReinhold: #sapcasm I would have liked to submit @JCDemmler and my work on the topic of #EDS using a large primary care database. We…
💥”Diagnosed point prevalence of 194.2 per 100,000...or roughly 10 cases in a practice of 5000 patients... Conclusions EDS and JHS..have historically been considered rare diseases...These data demonstrate that both these assertions should be reconsidered.”🔥
RT @DrEReinhold: #sapcasm I would have liked to submit @JCDemmler and my work on the topic of #EDS using a large primary care database. We…
#sapcasm I would have liked to submit @JCDemmler and my work on the topic of #EDS using a large primary care database. We published prevalence data for the first time as well as showing the truly multisystemic nature of HCTDs. #JHS #hEDS #hypermobility ht
@gsl_anna @BendyBrain @Laconic_doc @DrSdeG We made a start with @JCDemmler showing current diagnosed prevalence of #EDS/#HSD. True prevalence is closer to 1 in 30, so that single clinic is nowhere near sufficient. It also wasn't all that joined up or acces
RT @DrEReinhold: @elkmama3 @BluesteinLinda Yep, that it has a prevalence rate of 1 in 5000.... Still being quoted this month despite this h…
@elkmama3 @BluesteinLinda Yep, that it has a prevalence rate of 1 in 5000.... Still being quoted this month despite this https://t.co/oHlxLY5MdQ
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @jenbrea: Given that #MECFS is a COMMON condition: https://t.co/nggFPZ2hBt, if the 20% of this sample who meet #hEDS criteria reflect br…
RT @DrEReinhold: #EDSmaternity @SallyPezaro just referred to this prevalence paper on #EDS/#HSD @JCDemmler https://t.co/oHlxLY5MdQ
RT @DrEReinhold: #EDSmaternity @SallyPezaro just referred to this prevalence paper on #EDS/#HSD @JCDemmler https://t.co/oHlxLY5MdQ
#EDSmaternity @SallyPezaro just referred to this prevalence paper on #EDS/#HSD @JCDemmler https://t.co/oHlxLY5MdQ
RT @DrEReinhold: @knidac @t7_linda Because we have to be.... so often we aren't given good treatment as so few doctors understand the compl…
RT @DrEReinhold: @ehlersdanlosuk Hey guys, you seem to have made a typo. It's 1 in 500. @JCDemmler @KayJulier @markredhead https://t.co/oHl…
@ehlersdanlosuk Hey guys, you seem to have made a typo. It's 1 in 500. @JCDemmler @KayJulier @markredhead https://t.co/oHlxLY5MdQ
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: @audreyrsutton @amyhoy Here you go! https://t.co/oHlxLY5MdQ
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
@drpammys @AliMFischer @KathrynAbernath @LoveInYourTummy @asktheallergist @H2OhTwist @BendyBrain @jenbrea @BluesteinLinda @MastDisorder @DrSandeepGupta I'm no Dr House, but I'm deeply embedded in this complex #EDS #MCAS #Dysautonomia world. https://t.co/oH
RT @angieolygirl: "EDS and JHS (since March 2017 classified as EDS or HSD) have historically been considered rare diseases only affecting t…
RT @angieolygirl: "EDS and JHS (since March 2017 classified as EDS or HSD) have historically been considered rare diseases only affecting t…
RT @DrEReinhold: Here it is! The #research you've all been waiting for by @JCDemmler @SwanseaUni (& me) Thanks to @BMJ_Open #NotRare #EDS @…
RT @DrEReinhold: Here it is! The #research you've all been waiting for by @JCDemmler @SwanseaUni (& me) Thanks to @BMJ_Open #NotRare #EDS @…
"EDS and JHS (since March 2017 classified as EDS or HSD) have historically been considered rare diseases only affecting the musculoskeletal system and soft tissues. These data demonstrate that *both these assertions should be reconsidered.*"
RT @kimkozak: Doctors should read this, and EDS/CTD patients with comorbidities.
RT @pollyrowena: This has become more loaded this last year, since a new study by a team including @DrEReinhold found that hEDS may affect…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
RT @DrEReinhold: Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd…
Thanks @UniversitiesUK #IWD2020 Our #research into childbearing and #hEDS/HSD is changing the world. https://t.co/h202Kd0tZf We now know that these are not rare conditions. https://t.co/oHlxLY5MdQ @hEDStogether @GemmaSPearce @SallyPezaro @laurenmpurdy
RT @DrEReinhold: Some of you may be interested in our authors joint response to Hakim et al's letter regarding our recently published work…
RT @JCDemmler: Great to see this paper published in @BMJ_Open today. So how rare are #hEDS and #HSD in routinely collected data and how do…
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @pcrsociety: Two days to go the PCRMM Society Conference 14-16 Nov Looking forward to welcoming @DrEReinhold to give the Andy Martynoga…
RT @pollyrowena: This has become more loaded this last year, since a new study by a team including @DrEReinhold found that hEDS may affect…
This has become more loaded this last year, since a new study by a team including @DrEReinhold found that hEDS may affect numbers more like 1 in 500: https://t.co/g610axUlS0
RT @danimorsberger: @DrPhil 2- many geneticists underdiagnos EDS. It’s considered a rare disease but new research out of the UK estimates i…
RT @danimorsberger: @DrPhil 2- many geneticists underdiagnos EDS. It’s considered a rare disease but new research out of the UK estimates i…
@DrPhil 2- many geneticists underdiagnos EDS. It’s considered a rare disease but new research out of the UK estimates it to effect 1 in 500 people. https://t.co/hqtBslZH47. Your criticism of your client based on lack of diagnosis is damaging both to her a
@audreyrsutton @amyhoy Here you go! https://t.co/oHlxLY5MdQ
RT @jenbrea: Given that #MECFS is a COMMON condition: https://t.co/nggFPZ2hBt, if the 20% of this sample who meet #hEDS criteria reflect br…
RT @jenbrea: Given that #MECFS is a COMMON condition: https://t.co/nggFPZ2hBt, if the 20% of this sample who meet #hEDS criteria reflect br…
@DawsonInga @MoogieMonsters @caitlinzebra Check it out ladies. This sure adds up for me! You? 🤔
For all the folks who are suddenly experts on hypermobile Ehlers Danlos syndrome because of Jameela, learn a little: it’s not “rare” https://t.co/JaxnhjODHS
@saintsoftness There seems to be a lot of academics and writers with hEDS - I have a lot of thoughts about this. But there was a recent study that suggests hEDS is massively more common than thought - at least 1 in 500 so makes more sense: https://t.co/g61
RT @EDSAmanda: @DrEReinhold @JCDemmler Thank you for this long awaited #research. Finally some evidence that #hEDS & #HSD are #notrare. Now…
RT @DrEReinhold: @NikiLS85 I'm surprised to see #EDS included in this project, as the common hypermobile form is #NotRare at all, as demons…
@NikiLS85 I'm surprised to see #EDS included in this project, as the common hypermobile form is #NotRare at all, as demonstrated by our recent paper. As long as #hEDS is called 'rare', we will not get appropriate care. @hwcalderdale @JCDemmler @nicolablack
@Be_Kinderr @bendy_thumbs You should show this journal article to your doctor. tldr: HSD is hEDS and neither are rare. https://t.co/wcinUyHpxa
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
@SimonoffBob @KCSteckel @RyanNCTweets @soltysik_rob @R_tinti @GemzME @MastCellChat @TravisABenson @velogubbed @PeonyLeaves905 @JCDemmler and my recent paper shows the widespread multisystemic nature of #hEDS/#HSD. https://t.co/bOTLeYQKcj
RT @jenbrea: Given that #MECFS is a COMMON condition: https://t.co/nggFPZ2hBt, if the 20% of this sample who meet #hEDS criteria reflect br…
@R_tinti @MastCellChat @TravisABenson Did you also see this recent paper which goes into more detail about the multisystemic nature of #hEDS/#HSD. Do let me know if anything leaps out at you, or what further questions it makes you want answered. https:/
RT @Laconic_doc: If you were confused or disheartened by Hakim's critique of the recent EDS prevalence paper, here is a full and comprehens…
RT @Laconic_doc: If you were confused or disheartened by Hakim's critique of the recent EDS prevalence paper, here is a full and comprehens…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
RT @jvsimmonds01: Read this! These conditions are common and complex- not rare. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermob…
Commonly known for years, the *likelihood* of being ‘rare disease’... Medical violence and gaslighting is rife, don’t you know it...? Spare us the wankery of ‘now popular belief’ when people are and have been crying out suffering. #DidAnyoneCheckTheMycopl