OhTWIST

The Chronic Constellation- the Double Trifecta of Co-morbid Conditions The Chronic Constellation- a look at the collection of co-morbid conditions that we see common in the hypermobile and autistic community.

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities:

ohtwist.com/the-chronic-...

#EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid

The Ehlers-Danlos syndromes GP Toolkit A guide for GP's to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral

Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders!

gptoolkit.ehlers-danlos.org

#MedEd #FOAMed #MedTwitter #NEISvoid

They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations - Jennifer Langhinrichsen-Rohling, Chrystal L. Lewis, Sean McCabe, Emma C. Lathan, Gabrielle A. Agnew, Candice N. Selwyn, Margaret E. Gigler, 2021 Introduction: Patients with rare and/or care-intensive conditions, such as Ehlers-Danlos Syndrome (EDS), can pose challenges to their healthcare providers (HCPs...

They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs and healthcare expectations 021 Langhinrichsen-Rohling, Lewis,McCabe et al

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#EDS #HSD #hEDS #MedEd #NEISvoid #MedSky

Sorry about the bad link. Try this one:
pmc.ncbi.nlm.nih.gov/articles/PMC...

Here's a working link. Sorry about that folks:

pmc.ncbi.nlm.nih.gov/articles/PMC...

Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study Fibromyalgia and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are poorly understood conditions with overlapping symptoms, fuelling debate as to whether they are manifestations of the same spectrum or separate entities. Both are ...

Try this meanwhile:

pmc.ncbi.nlm.nih.gov/articles/PMC...

Oops, me neither. Sorry about that. I'll need to delete and research before reposting. Thanks.

Beyond bones: The relevance of variants of connective tissue (hypermobility) to fibromyalgia, ME/CFS and controversies surrounding diagnostic classification: an observational study 2021 Eccles, Thompson, Themelis et al www.rcpjournals.org/content/clin...

#EDS #fibro #HSD #MECFS #NEISvoid

The Chronic Constellation- the Double Trifecta of Co-morbid Conditions The Chronic Constellation- a look at the collection of co-morbid conditions that we see common in the hypermobile and autistic community.

The RCCX hypothesis *may* explain why #hEDS and the #HSD come with so many comorbidities:

ohtwist.com/the-chronic-...

#EDS #CFS #meded #EhlersDanlos #hypermobility #CAH #ME #Spoonie #POTS #MCAS #MyalgicE #MedTwitter #NEISvoid

Awareness poster with teal background. The top left has a white circle logo with the words "EDS Awareness Ehlers Danlos Syndromes." Next to it, bold text says: "Is hEDS just... 'All in your head'? - Study says no!" On the right, there's an emoji of a frustrated face. Below the text on the left, there's an illustration of an angry or stressed woman with fists raised and lines indicating tension around her head, plus a comic-style speech bubble with symbols ("#@%!"). In the center, a megaphone and a close-up photo of a magnifying glass over the word "EVIDENCE". At the bottom, white text reads: "EDS specialist Dr. Pradeep Chopra confirms decades of patients’ lived experiences," with "decades" in italic. Yellow fireworks accent the corners. At the bottom, website: www.chronicpainpartners.com

“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades

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#EDS #Hypermobility #hEDS #EhlersDanlosSyndrome #HSD #Zebras #NEISvoid #Medicine #Doctors #MedEd #Nurses #Psychiatry #MedSky

A promotional graphic for “EDS Unplugged” with bold text, photos of three women, and a large gold number 3. The main headline at the top reads: “EDS, MEDICAL RESEARCH & NEURODIVERGENCE”. A large gold “3” appears on the right side. The words “EDS UNPLUGGED” are in the center-left, with “EDS” in large black letters and “UNPLUGGED” in white letters on a black slanted rectangle. The name “JAN GROH” appears near the bottom in large pink letters. The phrase “sponsored by” appears near the center-right, next to a circular logo that reads: “EDS Awareness” and “Ehlers-Danlos Syndromes”. On the left is a woman with medium-to-dark skin tone wearing a black sleeveless outfit, holding a megaphone to her mouth. Near the middle is another woman with dark skin tone wearing black, arms raised, holding a forearm crutch. On the lower right is a close-up portrait of Jan, a light-skinned person with short curly brown hair and large glasses, wearing a patterned jacket over a dark top.

EDS Unplugged Podcast Episode 3: Neurodivergence with Jan Groh, author of the OhTWIST blog and co-author of the EDS Toolkit for Doctors

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#EDS #hypermobility #hEDS #HSD #NEISvoid #Zebras #Spoonies #Autism #ADHD #AuDHD #POTS #MCAS #MedEd #MedSky

Legit part of this cohort!! Bitch, I’m tired!!

#ChronicIllness #Awareness #EDS #EhlersDanlosSyndrome #BitchImTired #SpéirGorm #SpeirGorm #SpinalStenosis #ChronicIllnessHumor

Tip from someone who learned the hard way: bring data to your doctor appointments. Even rough notes about when symptoms happen and what makes them better or worse can change the conversation completely.

#PatientAdvocacy #ChronicIllness #HealthTracking

Good question.

Nationwide population-based cohort study of celiac disease and risk of Ehlers-Danlos syndrome and joint hypermobility syndrome - PubMed Individuals with CD have higher risk of EDS/JHS than the general population, which may be due to surveillance bias or factors intrinsic to celiac development.

Swedish study in 2016 concludes: Individuals with Celiac Disease have higher risk of EDS/JHS than the general population, which may be due to surveillance bias or factors intrinsic to celiac development.

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#EDS #HSD #hEDS #hypermobility #fibro #NEISvoid

"You're so lucky you get to stay in bed all day! I'd give anything to just 'be sick' and lay around all day." pic of a woman with her chin tucked (fucking) and the same woman with her neck out (what?) mybodyistryingtokillme.com

#Spoonies have any of you had success with meds for Gastroparesis other than Linzess or Amitiza? I've been on different doses of Linzess for years, but I still get stomach cramping & other unpleasant side effects. Amitiza does nothing whatsoever. My doctor has talked about trying something new.

A hug? 😉❤️

Breathe!

You just like me for my books. 🙄

COMPLICATED Children with complex illnesses and their families are labeled “too complicated” or torn apart by accusations of medical child abuse.

You can now stream the #EDS movie COMPLICATED from Open Eye Pictures at home for $14.98 USD. (Unsure about abroad.) I did, and bawled my eyes out, OMG! It's powerful! Have mast cell meds ready!
#zebras #MedSky #doctors #spoonies

openeyepix.myshopify.com/products/com...

At the top, a white banner reads: Book Review: The Chemistry Test. On the left is the book cover. The title, in large orange script, says The Chemistry Test. Below it, smaller text says: there are some things books can’t teach . . . The cover illustration shows a couple sitting close together in a cozy room; the woman is in a wheelchair. In the background are lab items (like a microscope and glassware), a pink backpack on the floor, and a vase of flowers. At the bottom of the cover is the author’s name in orange: GEORGINA FRANKIE. On the right side of the graphic, dark teal text reads: How Penny and Cam learn to not judge themselves - or their books - by their “covers”. Below that: Book Review by Kate Schultz, CPP Media Team. Near the bottom right is a circular logo that says EDS Awareness, with smaller text: Ehlers-Danlos Syndromes. Across the very bottom in large text: chronicpainpartners.com.

Book Review: The Chemistry Test by Georgina Frankie featuring a character with EDS and POTS:

buff.ly/lobHVGP

#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #POTS #Spoonies #Zebras #Fiction #Romance #Disability #Books

I sort of did a thing last year. 😉 Enjoy this wonderful wandering chat I had with Marcia and Cassandra about all things #EDS and ties to #autism we're finding. #zebras #podcast

Avoid Cipro! or Antibiotics From Fluoroquinolone Family if You Have EDS Avoid Cipro!- I'm dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have EDS or not, diagnosed or not) to AVOID all antibiotics from the fluoroquinolone or "quin" family...

We recommend avoiding Cipro and all fluoroquinolones if you're hypermobile:

ohtwist.com/avoid-cipro

#EDS #HSD #Fibro #medicine #fibromyalgia #nurses #doctors #medicine #MedTwitter #MedEd #FOAMed #NEISvoid

Ugh. Boo.

Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review) Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental and behavioral disorder with a serious negative impact on the quality of life from childhood until adulthood, which may…

Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (Review) 2020

buff.ly/3SoLVM7

#MCAS #ADHD #ADD #autism #allergy #nuerology #inflammation #NEISvoid #EDS #HSD #hypermobility #MedTwitter

Full text:

"emphasise the importance of the full recognition of trans women as women, noting that their inclusion is essential for the effectiveness of any gender-equality and anti-violence policies; call for recognition of and equal access for trans women to protection and support services;"

The Ehlers-Danlos syndromes GP Toolkit A guide for GP's to approaching the management of people who have EDS in a primary care setting, as well as indications for onward referral

Share the #EDSToolkit for doctors spearheaded by Dr. Reinhold in 2018 for NHS GPs, but available to anyone willing to learn more about #EhlersDanlos & #hypermobility Spectrum Disorders!

gptoolkit.ehlers-danlos.org

#MedEd #FOAMed #MedTwitter #NEISvoid

Good question.