RT @DrEReinhold: Here it is! The #research you've all been waiting for by @JCDemmler @SwanseaUni (& me) Thanks to @BMJ_Open #NotRare #EDS @…
@SawyerBlatz hEDS 1 in 500 research study https://t.co/zZ7uZXZejK
El enlace de este tuit no funciona, dejo aquí el enlace del estudio sobre la prevalencia del #EhlersDanlos hiperlaxo y los desórdenes del espectro hiperlaxo (#HDS) en Gales Enlace al estudio: https://t.co/a5hweR8suE
@MscreStarHope @MarkMooch Two more critical papers to show everyone: The 2020 MCAS expert consortium paper led by Dr Afrin, MCAS was 1 in 6 pre-Covid so common (this fact gets some disbelievers on board) https://t.co/UQeTf3swpa The 1 in 500 hEDS (it’s co
@8Eevert @BendyBrain @DrEReinhold Some of her work: https://t.co/SXBV4kpMxX
@Stephgts8 @moonshadow75 @drkeithsiau @Kristin67377787 There are 4 types of POTS, you can get more than one There are many types of EDS, you can only have one, it’s congenital — only one type is common, hEDS, at 1 in 500; it’s also the only type without
@Kristin67377787 @taraandtitli @LaraBloom Completely flawed methodology in that study; JHS is not hEDS. https://t.co/J6kmVObDg2
@emily_rj So, you may want to read the critiques of that study by genetics professors associated with the Ehlers-Danlos Society. JHS is not hEDS, and there is no evidence hEDS is common. https://t.co/KZjuanMdmN
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
RT @Kristin67377787: Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and s…
Thank you for sharing. It’s so important for ppl to know hEDS is common & some types of EDS are rare. This helps and supports the whole community and I hope it helps ppl w many diff types as it allows ppl to research the symptoms they have & ask qu
This is getting attention, so reminder: hypermobile #EDS or hEDS is the only common type of EDS, at 1 in 500 people Part of why medical providers refuse proper care or give unsafe care and harm patients is they don’t keep up with EDS news #MedTwitter h
RT @CortDoesScience: @robynhome A fabulous paper by @DrEReinhold @JCDemmler and others disagrees - although NORD is an excellent resource,…
RT @emily_rj: @dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the onl…
RT @emily_rj: @dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the onl…
RT @emily_rj: @dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the onl…
RT @emily_rj: @dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the onl…
RT @emily_rj: @dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the onl…
RT @emily_rj: @dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the onl…
@dgurdasani1 Yep hEDS, POTS and MCAS here — specialists call them The Trifecta as they go together so often hEDS is the only not rare type of EDS, clocked at a 1 in 500 population estimate https://t.co/zZ7uZXZejK
@Naomi_D_Harvey @candlelovers12 @Canal1point5 @dysclinic Yep and hEDS is common at 1 in 500, whereas the other types are still rare https://t.co/zZ7uZXZejK
ja agora o q se desconfia q nao seja raro é o EDS com hipermobilidade (hEDS). os outros continuam a ser considerados raros o estudo em questao: https://t.co/RqUBbh6Ikj
@robynhome A fabulous paper by @DrEReinhold @JCDemmler and others disagrees - although NORD is an excellent resource, I would say most if not all, experts agree that hEDS is not a rare disease. https://t.co/sAzfgANCL5
RT @emily_rj: Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023…
RT @emily_rj: Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023…
RT @RCCXTheory_MD: Yay!!!!
RT @emily_rj: Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023…
RT @emily_rj: Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023…
RT @emily_rj: Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023…
RT @emily_rj: Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023…
Research on the 1 in 500 hEDS estimate, from the largest population study published in 2019: https://t.co/VCAQFYmIol A 2023 CNN article on the crisis of a larger than expected EDS patient population vastly undertreated by medicine and research https://t.c
@DrLucyDouglas @PainSci @KMPhysiotherapy @SabeehaMalek Are you saying these levels of multisystemic problems are just 'normal'? See figures 4 & 5. We MUST stop thinking about #EDS #hEDS #HSD #JHS as being joint disorders. They are connective tissue dis
@DrJN_SportsMed @KMPhysiotherapy Seems to be 0.2% recently? We found 6021 individuals (men: 30%, women: 70%) with a diagnostic code of either EDS or JHS. This gives a diagnosed point prevalence of 194.2 per 100 000 in 2016/2017 or roughly 10 cases in a pr
RT @punished3liza: a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was…
RT @punished3liza: a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was…
RT @punished3liza: a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was…
RT @punished3liza: a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was…
RT @punished3liza: a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was…
RT @punished3liza: a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was…
a couple things to mention here: 1. the prevalence of joint hypermobility/hEDS (combined) in the general population was most recently estimated at 1 in 500 people, or 0.2% of everyone. https://t.co/0WkPtrEqrf this study was PART OF 2017 criteria revisions
RT @judyintheskynet: https://t.co/J7jDxtUPC4 Interessante Studie zu EDS, die auf Basis von Daten in UK zeigt, dass #EDS nicht so selten zu…
RT @judyintheskynet: https://t.co/J7jDxtUPC4 Interessante Studie zu EDS, die auf Basis von Daten in UK zeigt, dass #EDS nicht so selten zu…
https://t.co/J7jDxtUPC4 Interessante Studie zu EDS, die auf Basis von Daten in UK zeigt, dass #EDS nicht so selten zu sein scheint wie angenommen und nicht nur das muskuläre bzw Skelett-System betrifft. #EhlersDanlosSyndrome #csfleak #cci #tetheredcord #co
RT @BluesteinLinda: Such important information from this 2019 paper!!! 🧬❤️🩹🔬
RT @BluesteinLinda: Such important information from this 2019 paper!!! 🧬❤️🩹🔬
Such important information from this 2019 paper!!! 🧬❤️🩹🔬
@acserrao76 @Devon_NHSI @MelRheum @WeAreARMA @SueBrownSB @ChrisMartey @andypbennett79 Some link to #research I may have mentioned tonight https://t.co/W18HdY6KTU
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @BluesteinLinda: Definitely not rare! 🤯 We must do better at recognizing and treating symptomatic hypermobility! We can increase the o…
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 @BluesteinLinda: Definitely not rare! 🤯 We must do better at recognizing and treating symptomatic hypermobility! We can increase the o…
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…
Definitely not rare! 🤯 We must do better at recognizing and treating symptomatic hypermobility! We can increase the odds of these young people having active, productive lives! #HSD #EhlersDanlosSyndrome #hypermobility #bendy #spoonie #MedTwitter
RT @thekattdazzle: "This gives a diagnosed point prevalence of 194.2 per 100 000 in 2016/2017 or roughly 10 cases in a practice of 5000 pat…
"This gives a diagnosed point prevalence of 194.2 per 100 000 in 2016/2017 or roughly 10 cases in a practice of 5000 patients." Joanne C Demmler, et. https://t.co/IV2rxGuuDN
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @CortDoesScience: ~1:500 people with hEDS so why aren’t we educating our medical community? That is MORE than the prevelance of Lupus or…
RT @CortDoesScience: ~1:500 people with hEDS so why aren’t we educating our medical community? That is MORE than the prevelance of Lupus or…
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…
@gafsa_bux3 Especially because #EDS is #NotRare... https://t.co/bOTLeYQKcj
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
RT @BluesteinLinda: Excellent points!!!! 👇🏻🦓📝 #hEDS #HSD #EhlersDanlos
Excellent points!!!! 👇🏻🦓📝 #hEDS #HSD #EhlersDanlos
RT @BendyBrain: @DocZing @DrEReinhold @BluesteinLinda @RuhoyMD @dysclinic The wales paper is a great resource, I think the trickiness with…
@DocZing @DrEReinhold @BluesteinLinda @RuhoyMD @dysclinic The wales paper is a great resource, I think the trickiness with this paper is that the source data cant distinguish between hEDS and other EDS easily and is diagnostic data rather than true populat
@BluesteinLinda @BendyBrain @DocZing @RuhoyMD @dysclinic @DrEReinhold I go by the most recent research. According to the largest yet finished population surgery from a few years ago, EDS could be as common as 1 in 500 people. https://t.co/zZ7uZXZejK
@DocZing @JadeBarclay @Bloomswest @TamronHallShow @YouTube @TheEDSociety Though re: that paper in the rapid response discussions https://t.co/tXQItkF8kT "just 15% of people with a previous diagnosis of JHS now meet the 2017 hEDS criteria, this would be suf
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
@DrEReinhold @BMJOpenSEM @elNicodenuevo @SabeehaMalek With respect I wouldn't say omission, clinical tips are of course to be used with discretion. @DrEReinhold has a great paper on prevalence of EDS. Please do consider @BMJOpenSEM when submitting. Hypermo
RT @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…
@MRheumy @BillingMartin @snickalous @FCPphysio @EvolvedClinic OK. What's the prevalence of hereditary connective tissue disorders? Let's just think this through. The diagnosed prevalence is 1 in 500. True prevalence is more like 1 in 30. And we consult twi
RT @symptomodyssee: @nervvenarzt Dazu gehört EDS und andere hypermobilen Bindegewebserkrankungen. Die sind vermutlich deutlich häufiger als…
@nervvenarzt Dazu gehört EDS und andere hypermobilen Bindegewebserkrankungen. Die sind vermutlich deutlich häufiger als bisher angenommen, und entsprechend unterdiagnostiziert. Und gehen mit jeder Menge Komorbiditäten einher. https://t.co/SEsE0QRjpA
@lna_rb Apologies for my shorthand/fogbrain. I know there are rare forms of EDS. However I lose track of what we are calling it these days, I'm referring to whatever used to be EDS III /JHS/HMS etc. Is it hEDS/HSD now I can't keep up & the work by @DrE
@scrlovelife @LaraBloom @TheEDSociety I'm just gonna leave this here. #NotRare 1 in 500 Can someone let Lara know the good news that a high quality prevalence study has already been done? It seems to have slipped her mind. 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 @DrEReinhold: Ok, an hour late, but here it is! @JCDemmler (and my) paper on #EDS prevalence and multisystemic effects. #NotRare http…