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SEDSConnective

@sedsconnective.org

1.8K followers 170 following 560 posts

The foremost hypermobility neurodivergence community charity BrainBodyMind AUTISM ADHD DYSPRAXIA TS DYSLEXIA EDS HSD pain Chair @JGjanegreenmbe.bsky.social Patron @bendybrain.bsky.social Web: www.sedsconnective.org Link: https://linktr.ee/SEDSConnective

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SEDSConnective @sedsconnective.org · Apr 9

Neurodivergence ♾️
We have pioneered these connections as the leading charity as it has been misunderstood or diagnostically misattributed for so long! Read more www.sedsconnective.org 🙏
#brainbody #ADHD #Autism #dyspraxia #dyslexia #dyscalculia #TS #hypermobility #EDS #HSD #NothingAboutUsWithoutUs

An infographic from SEDSConnective titled "Neurodivergence" with overlapping colorful brain illustrations representing different neurodivergent conditions: Autism (green), AD(H)D (blue), Tourette’s (orange), Dyscalculia (purple), Dyslexia (pink), and Dyspraxia (red). Each brain lists associated strengths:

Autism: Memory, Fine detail thinking, Passion, Creativity
AD(H)D: Creativity, Energetic, Verbal skills
Tourette’s: Interpersonal skills, Planning strengths, Hyperfocus
Dyscalculia: Verbal skills, Empathy, Intuition
Dyslexia: Problem solvers, Visual thinkers, Observant, 3D thinkers
Dyspraxia: Empathy, Intuition, Problem solving
In the center, a blue circle reads: “Neurodivergence is having a brain that behaves, learns and processes differently from the neuromajority.”
Text at the top states:

“It is likely that connective tissues are different than the general population in some of these neurodivergences”
“You can also have acquired neurodivergence”
Logos and credits are at the bottom for SEDSConnective, Jane Green, Mary Colley, and Joseph Aquilina.

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SEDSConnective @sedsconnective.org · 9h

This is because of the latest research showing how jhypermobility and variant connective tissue is often found in people with long Covid even if they were not aware of it before.

The Sick Times @thesicktimes.org · 1d

Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. Read more from @marmb.bsky.social: bit.ly/3VVXSf6

Graphic with a zebra-print background, representing EDS awareness. At the center of the image, there is a plus icon for healthcare offset with cartoon representations of the virus SARS-CoV-2. The text reads, “The Sick Times. Getting diagnosed with hypermobility can help some people with Long COVID. Upcoming guidelines may make it easier. By Margot Armbruster.”

Key points you should know:

Current diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), a common comorbidity of Long COVID, are restrictive. Many people receive a diagnosis of hypermobility spectrum disorder (HSD) instead, but say doctors don’t take HSD as seriously as hEDS.

The Ehlers-Danlos Society is developing new hEDS criteria that will be released in 2026. Some experts think the new criteria may enable more patients to get an hEDS diagnosis.

Experts are also debating whether hypermobility is primarily a genetic condition or could also be caused by immune reactions to triggers like toxins and viral infections, including SARS-CoV-2.

People who are able to show how hypermobility affects their daily activities and interacts with their other conditions may be able to secure disability benefits or accommodations at work.

Moving forward, the Ehlers-Danlos Society will continue to incorporate patient feedback and scientific research into the forthcoming criteria.

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SEDSConnective @sedsconnective.org · 1d

3 years ago!
You can find the education paper here 👉 www.tandfonline.com/.../10.../13...

@jgjanegreenmbe.bsky.social @bendybrain.bsky.social

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SEDSConnective @sedsconnective.org · 2d

“Why did that hurt so much?”
Others might say you’re overreacting.
But they don’t see the storm inside.

www.sedsconnective.org/post/rejecti...

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SEDSConnective @sedsconnective.org · 3d

Thank you and Hypermobility (EDS HSD) can impact every single system in the body but often misconstrued as environmental or mental health issues only. It often affects us more after infections from illness, injury or viruses like Post Covid-19.

SEDSConnective @sedsconnective.org · 3d

A big health study looked at how common a condition called hypermobility Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) is in transgender and genderdiverse or gender expansive (TGD) people compared to cisgender people www.sedsconnective.org/research
Tabernacki et al (2025)

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SEDSConnective @sedsconnective.org · 4d

A brilliant advocate, leader and person for our charity

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Reposted by SEDSConnective

Jane Green MBE FCCT @jgjanegreenmbe.bsky.social · 5d

Two years ago today, I was honoured to receive my MBE for services to neurodivergent people and those with joint hypermobility conditions and Ehlers-Danlos syndromes.

This moment was not just personal but a milestone for our community. Since then,

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SEDSConnective @sedsconnective.org · 8d

SEDSConnective
We Are All This +
OCTOBER is Awareness for month, Week, Day
www.sedsconnective.org

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SEDSConnective @sedsconnective.org · 9d

SEDSConnective were delighted to open the Gofalwyr Ceredigion Carers Connecting Carers conference events at Prifysgol Aberystwyth University.
It was a great event and @jgjanegreenmbe.bsky.social has kindly offered to do a free online one event as well so no one will miss out! 🦓♾️

SEDSConnective @sedsconnective.org · 12d

Autism study

Does your autistic/ neurodivergent child have trouble sleeping ? ✅

2-15 years and under a Dingley consultant? ✅✅

Email [email protected] for more information or use the flyer

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SEDSConnective @sedsconnective.org · 13d

📢SEDSConnective Newsletter!
Sign up as a member and subscribe to our monthly newsletter!
➡️Register as a member here: sedsconnective.org/membership
➡️Sign up to the newsletter here: sedsconnective.org - scroll to the bottom of the page to sign up!

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Reposted by SEDSConnective

Jane Green MBE FCCT @jgjanegreenmbe.bsky.social · 15d

At @SEDSConnective, we advocate for accurate information, compassionate care and better awareness of the overlap between neurodivergence, hypermobility and co-occurring conditions.

Everyone deserves to be supported without needing to mask pain, fear, shame or misinformation.

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Reposted by SEDSConnective

Jane Green MBE FCCT @jgjanegreenmbe.bsky.social · 15d

We want to be clear: this is misinformation that risks further stigma and harm to neurodivergent people and their families. Research continues into the causes of neurodivergence, but

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Reposted by SEDSConnective

crawleycaction.bsky.social @crawleycaction.bsky.social · 15d

Do you have pain, fibromyalgia, tiredness, allergies or stomach issues?
Are you neurodivergent or have neurodivergent children?
No diagnosis needed.
Next Support Meeting by @sedsconnective.org is TOMORROW, 7-8.30pm at Crawley RH10 3NQ.
More here - www.sedsconnective.org/event-detail...?

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Reposted by SEDSConnective

Jane Green MBE FCCT @jgjanegreenmbe.bsky.social · 15d

Sadly, comments have been made by a highly influential person linking autism to paracetamol use in pregnancy.

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Reposted by SEDSConnective

Jane Green MBE FCCT @jgjanegreenmbe.bsky.social · 16d

Follows on partly from earlier study on longcovid and j.hypermobility and those with CFS ME fibromyalgia are likely to have our connective tissue differences. Join us for the new path

SEDSConnective @sedsconnective.org · 18d

Long covid and extreme hypermobility GJH

NEW STUDY
www.sedsconnective.org/post/hypermo...

Hypermobility GJH Extreme (EDS HSD) and long Covid

People with EXTREME hypermobility appear to be at particularly high risk for long COVID

www.sedsconnective.org

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SEDSConnective @sedsconnective.org · 17d

Our next free support meeting is this Thursday 25th September | 7pm - 8:30pm | Crawley RH10 3NQ

You don’t need a diagnosis to join us! Parents, carers and friends are also all welcome to come along.

View event on our website here: sedsconnective.org/event-details/… 🙏

SEDSConnective Support Meeting flyer. The poster highlights common conditions linked to EDS and HSD, including pain, fatigue, post-Covid-19, M.E./CFS, fibromyalgia, gastrointestinal issues, IBS, migraines, brain fog, autism, ADHD, dyspraxia, dyslexia, anxiety and depression. It notes that people with EDS are 74% more likely to be autistic and 56% more likely to have ADHD. The flyer invites people to the next Support Meeting on Thursday 25th September, 7pm–8:30pm in Crawley, RH10 3NQ. Contact details: general@sedsconnective.org, phone 07376 973 688. Website: www.sedsconnective.org. Charity nos. 1199724 and SCO54110.

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SEDSConnective @sedsconnective.org · 18d

Long covid and extreme hypermobility GJH

NEW STUDY
www.sedsconnective.org/post/hypermo...

Hypermobility GJH Extreme (EDS HSD) and long Covid

People with EXTREME hypermobility appear to be at particularly high risk for long COVID

www.sedsconnective.org

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SEDSConnective @sedsconnective.org · 19d

New papers/publications coming out 👀

SEDSConnective @sedsconnective.org · 20d

Patrons United!
@bendybrain.bsky.social 🙏

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SEDSConnective @sedsconnective.org · 21d

Credu gofalwyrceredigion-carers cymru on 26th September 2025 at Aberystwyth Uni.
Book Tickets here : tinyurl.com/2jyjxrh9

tinyurl.com

SEDSConnective @sedsconnective.org · 21d

SEDSConnective is delighted to be opening the nearly yearly long awareness events for carers with Chair
@jgjanegreenmbe.bsky.social on neurodivergence/hypermobility education, neuroscience, employment, health, caring in Wales
Credu
you can book tickets below

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SEDSConnective @sedsconnective.org · 22d

NEWS! 📢
We are thrilled to announce our new patron Dr. Zachary Spiritos!
Based in North Carolina Dr. Spiritos is a gastroenterologist with expertise in dysautononia, POTS, MCAS & mobility disorders such as EDS.
Watch our Instagram live here 👉
youtu.be/HLfJK9E_rXE?...
@jgjanegreenmbe.bsky.social

We’re delighted to welcome Dr. Zachary Spiritos as a new Patron of SEDSConnective!

YouTube video by SEDSConnective

youtu.be

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SEDSConnective @sedsconnective.org · 22d

We are so excited! It is tonight! Live on Instagram at 9.30pm BST!

SEDSConnective @sedsconnective.org · 23d

We are so excited!😁 Only 3 more hours to go until we go live on Instagram (@sedsconnective) at 9:30pm/21:00 BST! If you want to know more about our new patron...👀