hEDSErica (Barnacles)
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barnacl3s.bsky.social
hEDSErica (Barnacles)
@barnacl3s.bsky.social
49 followers 53 following 310 posts
Hypermobile, achy, clumsy, fatigued, brain-foggy, and more. I was finally diagnosed with hEDS after many painful years. #EDS #hEDS #Hypermobility #chronicpain
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cppedsa.bsky.social
From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors

buff.ly/Dys6qeP

#EDS #EhlersDanlosSyndrome #hEDS #Hypermobility #HSD #Zebras #NEISVoid #Spoonies #Medicine #Genetics #Doctors #Research #MCAS #POTS #MedSky
Logo for Brigant Laboratory showing dark blue text on a light gray background reading BL LABORATORY. The B and L are extra large, with a DNA twist running along the vertical length of the L, and molecular connectors coming off over the B.
February 3, 2026 at 1:14 PM
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sedsconnective.org
#ADHD SEDSConnective event London. Charity partner seed talks and a wonderful, very busy day!
Thanks to volunteers @jgjanegreenmbe.bsky.social Bonnie Southgate, Kelly and Lucy
January 31, 2026 at 8:41 PM
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cppedsa.bsky.social
Research Round-up, Edition Six - in which we bring you a variety of research angles involving the Ehlers-Danlos Syndromes as we close out 2025:

buff.ly/vsHqh5m

#EDS #hEDS #HSD #Hypermobility #Zebras #Spoonies #MCAS #Dysautonomia #POTS #NEISvoid #Medicine #MedSky #Doctors #Genetics
A large stack of books, laboratory glassware, globes, and scattered papers arranged in the center of a dusty outdoor setting. Surrounding this pile are several people on horseback, dressed in cowboy attire, swinging lassos as if rounding up the items. There is dust being kicked up around the horses, creating a dramatic scene. In the upper left corner, a circular logo reads "EDS Awareness – Ehlers-Danlos Syndromes." Text across the image says: Research Roundup!
December 27, 2025 at 12:14 PM
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ka81.bsky.social
They do know autism and adhd aren't mental health conditions don't they ? Don't they ?
a woman wearing a headband is standing in front of stairs .
Alt: a woman wearing a headband is standing in front of stairs .
media.tenor.com
December 4, 2025 at 11:52 AM
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lucyfoulkes.bsky.social
Last month, I found out I have hypermobile Ehlers Danlos Syndrome, after decades of chronic pain and medical disinterest.

I've decided to write publicly about this, not just about hypermobility and its health impacts, but about how it feels when doctors don't care:

medium.com/p/4fea6398b8ba
Welcome to my body
After twenty years of pain and repeated medical dead ends, a stranger sent me a message on Instagram. It led to a diagnosis all the doctors…
medium.com
November 26, 2025 at 5:20 PM
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juliachilds.bsky.social
Warning - a book plug coming up!
Have neurodivergent students in your household or away at uni? Maybe, you work in SEND. If so, my practical, pick n’ mix guide to study skills could be a good Christmas gift. Also available at Waterstones and Foyles. www.amazon.co.uk/Study-Skills...
A Study Skills Survival Guide for Neurodivergent Learners: A Pick n Mix of Study Skills Strategies for ADHD, Autistic, Dyslexic and Dyspraxic Learners
Buy A Study Skills Survival Guide for Neurodivergent Learners: A Pick n Mix of Study Skills Strategies for ADHD, Autistic, Dyslexic and Dyspraxic Learners by Childs, Julia (ISBN: 9781805011859) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.
www.amazon.co.uk
November 22, 2025 at 9:35 AM
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rantogethernow.bsky.social
It's a good'un
November 22, 2025 at 9:56 AM
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ph-ph-ph.bsky.social
hEDS

‘Our findings indicate a systemic immune dysregulation, particularly involving the complement system & profibrotic cytokines..
These findings challenge the traditional view of hEDS as solely a connective tissue disorder & support
⬇️
a revised paradigm
that includes innate immune dysfunction.’
October 27, 2025 at 3:32 AM
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ohtwist.bsky.social
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology October 2025 Griggs, Daylor, Petrucci et al

academic.oup.com/immunohorizo...

#EDS #hEDS #Hypermobility #HSD #Research #Science #Proteomics #Zebras #NEISvoid #Immunology
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology
Abstract. Hypermobile Ehlers–Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study a
academic.oup.com
October 26, 2025 at 2:10 AM
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cppedsa.bsky.social
New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome - another solid result from the Norris Lab at MUSC:

www.chronicpainpartners.com/new-study-re...

#hEDS #EDS #EhlersDanlosSyndrome #Hypermobility #HSD #Science #Medicine #Research #MedEd #Doctors #Immunology #MCAS #MedSky
Background is orange, and image shows close-up of multiple transparent test tubes, some filled with a blue liquid, with a pipette dispensing liquid into one of the tubes. Text on the image reads: NEW STUDY REVEALS Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome Published in ImmunoHorizons, this additional research provides yet another fresh biological insight into hypermobile Ehlers–Danlos syndrome (hEDS), the most common but least understood form of EDS. HEDS is a multi system condition leading to dozens of comorbid conditions. This study found clear markers for system immune dysregulation in patients with hEDS. Chronic Pain Partners www.chronicpainpartners.com Circular logo top right says: EDS Awareness Ehlers-Danlos Syndromes
October 27, 2025 at 5:44 AM
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ehlersdanlos.bsky.social
Francie Fitzgerald speaks on the experience of living with #hypermobileEhlersDanlossyndrome (hEDS) and #POTS for the past 13 years; highlighting the diagnostic odyssey and the arduous process of finding effective treatments. youtu.be/Qa-dfd2Nl2k?...
2023 Living with hEDS and HSD: POTS - Francie Fitzgerald
YouTube video by The Ehlers-Danlos Society
youtu.be
October 25, 2025 at 1:30 PM
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cppedsa.bsky.social
Celebrate #InvisibleDisabilitiesWeek Oct 19-25, 2025 with us by checking out our new podcast episode on that very subject!

buff.ly/OhQXbZY

#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #POTS #MCAS #Spoonies #Zebras #NEISVoid #Disability #DisCo
Podcast promotional graphic. The background is white with various images and text placed around. In the upper left is a logo reading "EDS Awareness - Ehlers-Danlos Syndromes" with blue and orange coloring. The text nearby says "Presents... PODCAST". A large speech bubble on the right contains the text "EPISODE 1: Invisible Disabilities" in blue letters. Across the center, the text "EDS UNPLUGGED" is written in bold black letters on a diagonal, with a gold ribbon weaving through the letters. There are two images of Black women in black athletic wear: one on the left holding a megaphone, and another on the right standing with a mobility aid and one arm raised. At the bottom right is a picture of Kate Schultz with glasses giving a thumbs up, wearing a purple shirt with colorful images on it. Below the central text, in blue, it says: "With guest: Kate Schultz".
October 19, 2025 at 2:14 PM
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achronicvoice.com
"You can’t ‘try harder’ your way out of #ChronicIllness. I’m done #hiding. I’m not fine. I want people to see. Only thru seeing & #understanding ..will people begin to be capable of providing real #compassion, #support & allyship.": buff.ly/hRnsZRS

by @broadwaybabyto.bsky.social
Why Are Chronically Ill People Forced to Hide Their Pain?
And what would happen if we stopped hiding and showed the world the depths of our suffering?
buff.ly
October 21, 2025 at 7:31 AM
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ohtwist.bsky.social
New #EDS study out shows average 20 year diagnostic delay and significant polymorbidity in #hEDS and #HSD patients:

pubmed.ncbi.nlm.nih.gov/40869462/
Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs - PubMed
<span><b>Background:</b> Hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSDs) are prevalent, complex conditions marked by chronic pain, joint instability, and multisys...
pubmed.ncbi.nlm.nih.gov
October 13, 2025 at 4:24 PM
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cppedsa.bsky.social
Fresh #EDS News from Chronic Pain Partners includes a new lab, genetic news, a new podcast and more:

buff.ly/UyLbCzo

#EhlersDanloSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #NEISvoid #Medicine #Genetics #Doctors #Nurses #MedEd #Research
EDS Newsletter October 2025: New Study hEDS gene, New EDS Podcast
New EDS Lab, hEDS gene research, IIH, Hormones and EDS, New Podcast, Book with EDS character The Chronic Pain Partners Post Chronic Pain Partners…
buff.ly
October 2, 2025 at 2:10 PM
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chronicillness.bsky.social
@misaonwheels.bsky.social
@MisaonWheels Having a positive attitude does not make a disabled person less disabled. Regular exercise and a healthy diet does not make a disabled person less disabled. Succeeding in life does not make a disabled person less disabled.
October 2, 2025 at 4:06 PM
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drrachelclarke.com
Here I am in 2020 in the flimsiest, most pitful PPE - like so many other NHS staff, some of whom died from the Covid they caught in their hospitals.

Tory peer Michelle Mone - who today lost her legal case & must repay the govt £122m - dares to claim she’s been ‘scapegoated’.

What, Michelle? 🧵
Rachel wearing very flimsy looking apron, mask and visor in NHS setting
October 1, 2025 at 12:22 PM
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barackobama.bsky.social
We have people in power making broad claims around certain drugs and autism that have been continuously disproven.
September 25, 2025 at 2:02 PM
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neuro-observant.bsky.social
It’s NOT a communication “deficit”… It’s the Double Empathy Problem - and it changes everything

💬 Autistic people aren’t defective, uncaring, or unsociable

🧠 The real issue? Two different neurotypes trying to connect

Communication is a two-way street, not a one-sided flaw

(1/7)
September 27, 2025 at 3:22 PM
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mrsbettybowers.bsky.social
It's weird how Tylenol caused autism (first diagnosed in 1943) before it was even invented (1955). What a clever drug.
September 23, 2025 at 1:29 AM
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measuredandslow.bsky.social
Hey a thing I really don’t want to get lost here is that while Tylenol doesn’t cause autism, IT’S FINE TO BE AUTISTIC. Let’s not grant them the premise that autism should be eradicated in our way to correct the science, okay? Okay.
September 22, 2025 at 11:57 PM
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drmikemendoza.com
If you’re reconsidering your stance on Tylenol please just remember that the source here is also the same source who opined that drinking bleach was actually a thing.
September 23, 2025 at 7:10 AM
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autisticgirlsnet.bsky.social
For autistic girls, simply showing up can mean battling fear, panic, and exhaustion. What they need most isn’t punishment, it’s kindness, and understanding of the resilience they've already shown before the school day even begins.
If you could go back to your childhood, what would you say to your teachers? "Don’t tell me off for lateness in front of everybody, or at all. Be glad that I was able to overcome my fear and panic today and welcome me. I do not like being singled out." Violet.
September 22, 2025 at 7:30 PM
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juliachilds.bsky.social
Forgive a bit more self promotion but I’m dead chuffed to hear that my book has been ordered by some libraries, so that people don’t have to spend if they don’t have the cash. If you do (!) it’s available on Waterstone’s and Foyles, as well as here:

www.amazon.co.uk/Study-Skills...
A Study Skills Survival Guide for Neurodivergent Learners: A Pick n Mix of Study Skills Strategies for ADHD, Autistic, Dyslexic and Dyspraxic Learners
Buy A Study Skills Survival Guide for Neurodivergent Learners: A Pick n Mix of Study Skills Strategies for ADHD, Autistic, Dyslexic and Dyspraxic Learners by Childs, Julia (ISBN: 9781805011859) from Amazon's Book Store. Everyday low prices and free delivery on eligible orders.
www.amazon.co.uk
September 23, 2025 at 6:04 PM
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jgjanegreenmbe.bsky.social
POTS elevated in hEDS group Dysautonomia symptoms were profound, debilitating: chronic fatigue, dizziness brain fog with chronic fatigue strong significant aspect of the autonomic dysfunction. Heart & temperature regulation issues autonomic dysfunction ANS
August 10, 2025 at 9:24 AM