jgjanegreenmbe.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

RARE Disease DAY to raise awareness for rare diseases. For Ehlers-Danlos, we have 13 named types. Do you have a rare type like Classical or Vascular EDS? The 13th is hypermobility EDS (hEDS); 80-90% have it or the closely related HSD, we believe to be rare as rarely diagnosed. #EDS #HSD #vEDS #cEDS

submitted 6 hours ago • 1 comment

Thank you. I regularly present and write on this including think tanks but understanding our movement #neurodivergence #hypermobility takes time.

submitted 3 hours ago • 0 comments

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue disorders. Some features are seen across all types of #EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility. Learn more: www.ehlers-danlos.com/what-is-eds/ #EhlersDanlosSyndrome #Health

submitted 81 days ago • 0 comments

According to Professor Grahame "No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome" (including HSD) #EDS #HSD #hypermobility

submitted 1 day ago • 0 comments

AI voicemail is getting weirdly personal. I don’t own a Lexus or have any plans to go to Tennessee #AI

submitted 1 day ago • 0 comments

The first peer reviewed paper (Golden Access) 2023 on neurodivergence (#Autism #ADHD, #dyspraxia +) & hypermobilty in education. Fantastic collaboration with Dr Donaghy DMoore. My passion and my first paper. www.tandfonline.com/doi/full/10.... @SEDSConnective.org

submitted 1 day ago • 2 comments

The National Institutes of Health had to stop considering new grant applications, delaying funding for research into diseases ranging from heart disease and cancer to Alzheimer's and allergies.

submitted 5 days ago • 174 comments

Wrt the lived experience/3rd person science debate: The pleasure of listening to music cannot be reduced to the properties of sound waves. Listening to music will not reveal the properties of sound waves. The two should be continuous.

submitted 6 days ago • 1 comment

Neurodivergence means having a brain that behaves, learns, and processes differently from the typical majority. #neurodivergent #neurodivergence #autism #ADHD #Dyspraxia #Dyslexia #Dyscalculia Neurodiversity is about ALL brains being different. #neurotypical #neurodiversity

submitted 3 days ago • 0 comments

An image of the graphic based on the Dunning-Kruger effect.

submitted 2 days ago • 1 comment

bbc.co.uk/news/articles/… We made a complaint over language and terminology and we were delighted it was upheld. They have changed it to neurodivergent individuals after our explanation of what neurodivergent and neurodivergence is plus more clarification of auditory processing disorder.

submitted 6 days ago • 2 comments

Join us! 📢 We're seeking a Fundraising Lead for our board. This is a paid, remote role and is vital for SEDSConnective’s vision. Deadline: 31st March 2025. 🗓️ Email [email protected] with CV and cover letter. ♾️ ow.ly/GMYL50V6lko 🦓

submitted 2 days ago • 0 comments

A4 We need to be vocal about the need to include people with disabilities in all stages of #AI development. It is too easy to be left out of discussions. Companies on their own may choose to ignore us which is why we need regulations to compel the industry to work with the disabled people. #AXSChat

submitted 2 days ago • 1 comment

As a person with lived experience, a dedicated advocate, fundraiser and changemaker in healthcare, education, policy change and research particularly with neurological conditions such as ADHD, Autism, Dyslexia, Dyspraxia,

submitted 7 days ago • 1 comment

Exciting news coming!📢

submitted 8 days ago • 1 comment

Have You Listened to This? 🎧 Revisiting this important episode of BBC Radio 4’s Inside Health- featuring @bendybrain.bsky.social and our chair @jgjanegreenmbe.bsky.social Listen here (at 9 mins): 🔗 bbc.co.uk/sounds/play/... #Neurodivergent #hEDS #HSD #Autism #LateDiagnosis #BBC

submitted 8 days ago • 0 comments

Sounds interesting and often connected to our differences #connectiveTissue #dysautonomia

submitted 9 days ago • 0 comments

www.wirralglobe.co.uk/news/2494209...

submitted 10 days ago • 0 comments

Looking forward to the next think tank of improving disability services in the UK. #EDS #HSD #ND #neurodivergence @sedsconnective.org

submitted 10 days ago • 0 comments

#RandomActsOfKindnessDay #RandomActsOfKindnessWeek #Bekind #ripplesGrow Let someone know about us ! sedsconnective.org

submitted 11 days ago • 0 comments

Recommend that anyone who is parent/carer, teacher or supports a neurodivergent person with hyper mobility follows @sedsconnective.org for a wealth of research based information and support.

submitted 11 days ago • 1 comment

Rejection Sensitive Dysphoria D'you find you can often be extreme with feelings, emotions responses so much it hurts physically? Do other people find it odd? #Autism #ADHD #neurodivergence Read more here sedsconnective.org/post/rsd-the...

submitted 11 days ago • 0 comments

The connections SEDSConnective have pioneered on hypermobility & neurodivergence with the help of key researchers like our Patron @Bendybrain.bsky.social and our Chair/ founder Jane Green MBE @JGjanegreenMBE.bsky.social are being more understood🙏 26th Feb

submitted 13 days ago • 1 comment

Have you seen my linktr'ee ? linktr.ee/JaneGreenSEDS Some of my health and education articles, press and the peer reviewed Paper on neurodivergence and hypermobility is here. Do have a look!

submitted 12 days ago • 1 comment

Happy Valentine's Day Happy ValentinesDay to all! ❤️ Happy Friday to all those who don't celebrate Valentines 🌟 Happy half term to those not celebrating w'kends Happy something else to all who don't celebrate 🙏 #Love #ValentinesDay #ND #EDS #HSD #Everyone #diversity

submitted 14 days ago • 0 comments

Birthdays are for life For those parents/carers who post about neurodivergent children not being invited to birthday parties I need to tell you something A) they probably don’t see your posts B)

submitted 15 days ago • 1 comment

So important and first peer reviewed paper on #Autism #ADHD #dyspraxia coocurring health which is often masked and misattributed. Think EF, brainfog, fatigue, pain 'anxiety' attendance issues. #edspsych #teaching #education

submitted 16 days ago • 0 comments

#InternationalDayofWomenAndGirlsinScience We are delighted to celebrate #IDWGS and a quote from our Patron, Dr Eccles, a pioneer in science. 'Science is how we drive things forward.... 1/3⬇️

submitted 17 days ago • 1 comment

#educators #Teachers #SENCO #families #EP contributing to EHCPs for autistic children Online survey by scanning the QR code. It takes 5-10 mins Ethics approved app.onlinesurveys.jisc.ac.uk/s/ljmu/educa...

submitted 19 days ago • 0 comments

I am sure voluntary charities trying to make a difference need advocates or volunteers like @sedsconnective.org if you want to really help :)

submitted 19 days ago • 0 comments

‘This understanding opens the door to targeted treatments that could greatly improve quality of life’ Eccles

submitted 19 days ago • 0 comments

What a webinar I wanted to keep asking questions but had to ensure others had their questions too. I think we’ll do more #sedation #anaesthetics #connectiveTissues #phobias

submitted 21 days ago • 0 comments