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Posts tagged #hEDs

Eight "crumb" quilt blocks arranged in 2 columns of 4, attached by thin strips of mottled charcoal grey, lays on the grass. The left hand column are all made of red scraps in various shapes and sizes. In the right hand column, only the middle two blocks are red, while the top and bottom are orange. Some fabric patterns include seashells, robots, flowers, skulls, and celtic knotwork.

Eight "crumb" quilt blocks arranged in 2 columns of 4, attached by thin strips of mottled charcoal grey, lays on the grass. The left hand column are all made of red scraps in various shapes and sizes. In the right hand column, only the middle two blocks are red, while the top and bottom are orange. Some fabric patterns include seashells, robots, flowers, skulls, and celtic knotwork.

Eight "crumb" quilt blocks arranged in 2 columns of 4, attached by thin strips of mottled charcoal grey, lays on the grass. The top two blocks in the left hand column, and bottom blocks of both columns are made of blue scraps in various shapes and sizes. The top block in the right hand column is green, the middle two blocks are turquoise, as well as the third down on the left. Some fabric patterns include owls, space, yoshi, space invaders, batman, koi fish, batik.

Eight "crumb" quilt blocks arranged in 2 columns of 4, attached by thin strips of mottled charcoal grey, lays on the grass. The top two blocks in the left hand column, and bottom blocks of both columns are made of blue scraps in various shapes and sizes. The top block in the right hand column is green, the middle two blocks are turquoise, as well as the third down on the left. Some fabric patterns include owls, space, yoshi, space invaders, batman, koi fish, batik.

Feels good to be back at work on my rainbow crumb quilt. The rest of this top should come together pretty quickly (for me) so long as I don't let my newfound ability to do upright tasks for longer w/o breaks (thnx #POTS meds) screw up my pacing for #hEDS joint care, & cause a flare
#fibrofiberartist

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Picture showing my new knee brace from Bibipins! It's got the galaxy pattern!

Picture showing my new knee brace from Bibipins! It's got the galaxy pattern!

@bibiblossoms.bsky.social , honey!!! I'm in love with my new knee braces AND the back brace! I FEEL SUPPORTED!!! If you're a disabled baddy with the need for such items, or a cane, or even cute bags: GO CHECK HER STORE!!

bibipins.com/en-ca

#hEDS #hypermobile

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Okay, my beautiful #Hypermobile peeps...I'd love to connect with more of you. Please reach out if you have #hEDS or #HSD (or you are close to a bendy soul).

What helps you get through the day (esp if you have to sit at a computer all day)?

I live in Canada. I'll share my go-tos in the replies.

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Amy Scoggins’ ‘The Caretaker And The Warrior’: Advocating for Ehlers-Danlos Syndrome After her teen daughter was diagnosed with Hypermobile Ehlers-Danlos Syndrome (EDS), American painter Amy Scoggins decided to use her platform to raise awareness of the rare inherited disease. She…

"After her teen daughter was diagnosed with Hypermobile Ehlers-Danlos Syndrome (EDS), American painter Amy Scoggins decided to use her platform to raise awareness..."

#Artist #Art #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #SelfCare
💕 #Wellness

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Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

How about both?

#BlogPost #GutHealth #Nutrition #Diet #Microbiome #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare #HappyGutHappyLife 💕 #Wellness

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Ik was me nooit bewust van het feit dat oestrogeen ook zoveel effect heeft op je bindweefsel.
Vandaar dat ik #Heds #EDS en #HSD ook even tag
Er is gewoon veel te weinig kennis over het vrouwen lichaam en nog zoveel meer mogelijk dan alleen 'je er maar doorheen worstelen' 3 jaar geleden had mijn HA

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Self-Care For Folks With Hypermobile Ehlers-Danlos Syndrome (Yes, You Do Deserve It) Self-care when you live with a complex disorder like EDS (especially if you have the usual add-ons like MCAS or POTS) is crucial&#…

It's not selfish.

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare 💕 #Wellness

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Health coaching, Edu-coaching, Consultation: The Which and Why and When for People with Ehlers-Danlos Syndrome Working with a health coach can be one of the most affirming, valuable, inspiring things you can do when you decide that yes, it i…

Which resonates most for you?

#BlogPost #HealthCoach #EduCoach #Consultations #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth 💕 #Wellness

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If I have to have a 'rare' genetic conditions, at least I have one that seems overrepresented* in queer/trans communities.

This post brought to you by my piercer correctly guessing what's causing the random issue with my piercing.
*200% anecdotal evidence
#hEDS

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Online Resources for Understanding and Living With EDS and HSD Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that affect the skin, joints, and blood vessel walls. Because it is a complex and often misunderstood condition, finding reliable...

Have you been looking for information, resources, and support? Give our blog post a read. 🩵🦓🩵

linktr.ee/thezebraalliance #EDS #ehlersdanlossyndrome #ehlersdanlos #hEDS #HSD #hypermobilityspectrumdisorder #hypermobility #chronicillness #EDSresources

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Ehlers Danlos Syndrome and Men: Three Key Issues Men and their experiences living with hypermobile Ehlers Danlos syndrome is a whole topic…one that doesn’t get nearly enough attention in my opinion.  When you look online for info…

Guys have #EhlersDanlosSyndrome too, you know.

#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

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A memorial-style poster on a teal background with white text, two white doves holding olive branches, a crying zebra illustration, and a photo of two people standing together at an indoor event.

Text on the poster says:
EDS Awareness
Ehlers-Danlos Syndromes
Remembering EDS champion: Dr. Grahame
1932 - 2026
chronicpainpartners.com

In the photo, Dr. Grahame, an older light-skinned man with short gray hair and glasses is wearing a light beige jacket over a blue striped shirt. Next to him is Jan Groh, a light-skinned woman with short dark hair and glasses wearing a patterned dress and a scarf, with visible forearm supports/braces and a blue-handled mobility aid. Two small candle illustrations appear near the bottom corners.

A memorial-style poster on a teal background with white text, two white doves holding olive branches, a crying zebra illustration, and a photo of two people standing together at an indoor event. Text on the poster says: EDS Awareness Ehlers-Danlos Syndromes Remembering EDS champion: Dr. Grahame 1932 - 2026 chronicpainpartners.com In the photo, Dr. Grahame, an older light-skinned man with short gray hair and glasses is wearing a light beige jacket over a blue striped shirt. Next to him is Jan Groh, a light-skinned woman with short dark hair and glasses wearing a patterned dress and a scarf, with visible forearm supports/braces and a blue-handled mobility aid. Two small candle illustrations appear near the bottom corners.

Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)

www.chronicpainpartners.com/remembering-...

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid

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I’m tired of this grandpa 😭

#chronicillness #chronicpain #heds #ehlersdanlos #ehlersdanlossyndrome

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Self-Care For Folks With Hypermobile Ehlers-Danlos Syndrome (Yes, You Do Deserve It) Self-care when you live with a complex disorder like EDS (especially if you have the usual add-ons like MCAS or POTS) is crucial&#…

Nope. Definitely not selfish.

#BlogPost #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #POTS #HolisticHealth #Acupuncture #TuiNa #SelfCare 💕 #Wellness

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Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

Why not both?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #GutHealth #Mindful #Intuitive 💕 #Wellness

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#leeresNest #Familie

Die Kinder sind erwachsen, alle mit Partner*in und Kind/ern.
Ich habe 2 Berufe gelernt/studiert und auch als Queereinsteigerin (gerne) gearbeitet.
Das geht wg Krankheit nicht mehr. Handarbeite viel, hab einen tollen Partner aber mir fehlt etwas Sinnvolles.

#kPTBS #hEDS #DIS

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How Chinese Medicine Treats hEDS (Where to Begin) Acupuncture and other modalities of Chinese medicine can be an excellent resource for people with complex disorders, EDS and the c…

How does Chinese medicine treat EDS?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare #Strategies
💕 #Wellness

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I ordered a pregnancy pillow (aka u-shaped pillow). I’m not pregnant. But I am hypermobile and sleeping sucks most nights #hEDS #hypermobile #POTS #ehlersdanlos

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Wo ist der Sinn?
Gibt es etwas,
Was ich im Leben erreichen will?
Und was will ich anderen "hinterlassen"? ...

So ist dein Allag
-Nach außen hin-
Vielleicht wieder der Alte

Doch du selbst,
Du bist es nicht.

#Überleben #Krankheit #Gewaltfolgen #Kptbs #dis #trauma #EhlersDanlosSyndrom #hEDS

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Acupuncture & EDS: How to Find a Practitioner of Chinese Medicine When You’re a Zebra ~~~~~             My first blog post about finding an acupuncturist was in 2019, so it’s been a while.  Besides, the original essay…

If you're complicated it is that much more important to know how to find the right acupuncturist for your needs.

#BlogPost #Acupuncture #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare
💕 #Wellness

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Sagt mal. Was gibt euerm Leben Sinn? Bin da echt viel am überlegen gerade.
Gerade Menschen mit stärkeren Einschränkungen.

#hEDS #MECFS #Longcovid #DIS #kPTBS #chronicpain

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8 months post endometriosis excision & hysterectomy. Diagnosed with hEDS, POTS & fibromyalgia after years of being unheard.
Still grieving my old body, still learning my limits.
Chronic illness = daily battle.
Be kind. You never know what someone is facing.
#endometriosis #heds #pots #Fibromyalgia

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Teal blue square graphic about EDS Awareness features a large black and white zebra striped looped awareness ribbon upper left. "EDS Awareness Month" in orange text over that. A graphic of a party horn or favor emitting sparks and stars.

A text bubble reads "We have lots of ways to celebrate EDS Awareness!" in teal on white. 

A white circular logo bottom right reads: "EDS Awareness" and "Ehlers-Danlos Syndromes". 

Bottom black text reads: www.chronicpainpartners.com

Teal blue square graphic about EDS Awareness features a large black and white zebra striped looped awareness ribbon upper left. "EDS Awareness Month" in orange text over that. A graphic of a party horn or favor emitting sparks and stars. A text bubble reads "We have lots of ways to celebrate EDS Awareness!" in teal on white. A white circular logo bottom right reads: "EDS Awareness" and "Ehlers-Danlos Syndromes". Bottom black text reads: www.chronicpainpartners.com

We've got 22 Ways to Celebrate EDS Awareness Month in May! See if one or two suit you:

buff.ly/bhtQQQ2

#EDSAwareness #EDS #hEDS #Hypermobility #HSD #MedEd #Zebras #NEISvoid #Doctors #MedX #Spoonies

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My pelvic organs are soup today. Had to leave poetry club as there’s no accessible toilet 😔

#heds

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#Schmerzen seit 48h zu hoch. Schmerzmittel ausgereizt. Entspannung, warmes Wasser, Akzeptanz, nach innen kommunizieren, mit ❤️Menschen kommunizieren, Musik, Handarbeit. Vieles ausprobiert.
Und es tut einfach weiter weh.
Bin grad bisschen verzweifelt.
#hEDS #DIS #kPTBS #CF

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Ehlers Danlos Syndrome and Men: Three Key Issues Men and their experiences living with hypermobile Ehlers Danlos syndrome is a whole topic…one that doesn’t get nearly enough attention in my opinion.  When you look online for info…

Yes, guys have EDS too.

#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

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Gastrointestinal Autonomic Disorders The gastrointestinal (GI) system and the autonomic nervous system (ANS) have a complex relationship, and disruptions to this relationship can lead to a range of GI disorders, such as autonomic gut dis...

Many w Ehlers-Danlos Syndrome also have Autonomic Nervous System Dysregulation/Dysfunction. This is where the brain-gut connection comes into play.
#gastronomy #gastroenterology #autonomicnervoussystemdysfunction #braingut #neurology #chronicillness #EDS #hEDS #ehlersdanlossyndrome #HSD

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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.

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

buff.ly/9sZKVdD

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

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It is a treasure trove of info but it is going to take me 1000 years to finish Disjointed. #hEDS #MCAS #Disautonomia etc

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#chronischkrank ist gemein 😒

#hEDS #kPTBS #DIS #CF #cronikpain

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