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

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

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:

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

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

#heds

#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

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

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

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

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

#chronischkrank ist gemein 😒

#hEDS #kPTBS #DIS #CF #cronikpain

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…

Which speaks more to you, intuitive or mindful eating?

#BlogPost #GutHealth #Intuitive #Mindful #ChineseMedicine #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth #SelfCare 💕 #Wellness

Missed our prior newsletters? You can catch up on all of them here in our archives, any time you like:

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#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #NEISvoid #Doctors #MedEd #Medicine #POTS #MCAS #Dysautonomia #Genetics #MedSky

Sometimes I know the labs will take a couple days, but I STILL find myself checking the portal every few hours … or multiple times an hour 🙈

#NEISVoid #Disability #Disabled #Labs #Labwork #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #JTube #GTube

Disabled life means waking up to lab results, MyChart messages, appointment reminder calls, and more 🫠

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS #Dysautonomia #POTS #PosturalOrthostaticTachycardiaSyndrome

I’m cold. It’s 11pm. The heat goes down to 64 during the night. I want to curl up in my heated blanket, but I need to do tube care first. Doing tube care means exposing my abdomen to The Cold 🥶

#NEISVoid #Gastroparesis #Spoonie #Tubie #FeedingTube #Disabled #Disability #ChronicIllness #HEDS #MCAS

I have to use silver nitrate to treat granulation tissue around my #GTube. I hate doing this because it’s sooo painful and then the tissue keeps coming back 😭

#NEISVoid #FeedingTube #Tubie #Spoonie #ChronicIllness #Disabled #Disability #Gastroparesis #EhlersDanlosSyndrome #HEDS #MCAS

The Languages of Ehlers-Danlos Syndromes, MCAS, and POTS: Words Count How do you articulate your experience?              Yes, this is a loa…

What language do you speak when you speak of yourself as a person living with EDS?

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

Solve for Both X and Y- Mechanical and Biochemical Approaches Solve for both X and Y- I don't recommend any single particular therapy/remedy for everyone, as clearly no single remedy will work for everyone nor will always be appropriate. But I do recommend some…

Solve for both X and Y when treating #hypermobility and Ehlers-Danlos Syndromes:

ohtwist.com/solve-for-bo...

#EDS #hEDS #HSD #Fibromyalgia #MedEd #FOAMed #MedTwitter #doctors #nurses #NEISvoid

Jen Kain about her new EDS doc “Exhausted Existence” – EDSAwareness.com Chronic Pain Partners’ Karina Sturm spoke with Jen Kain, the filmmaker behind “Exhausted Existence”. Kain’s documentary delves into the world of Ehlers-Danlos syndrome (EDS) and the lived experiences…

Our interview with Jen Kain about her new EDS doc “Exhausted Existence”:

buff.ly/NOlO8U7

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #Zebras #Documentary #Medicine #Doctors #NEISvoid #Film #MedTwitter #MedSky

Is Your Anxiety and Depression Caused by a Hidden Allergic Reaction? Discover how Mast Cell Activation Syndrome (MCAS) may be the hidden cause of anxiety and depression. Explore holistic approaches to treatment.

Not all anxiety stems from emotional reactivity.

#Anxiety #MentalHealth #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon – EDSAwareness.com Dr. Hollick runs the Boston Marathon for two of his patients with Ehlers-Danlos Syndrome who have recently died.

The Extra Mile: Why This 79-Year-Old Pioneering Physician Ran the Boston Marathon Again in 2025

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#EDS #EhlersDanlosSyndrome #hEDS #HSD #Hypermobility #Doctors #Advocacy #Marathon #Zebras #NEISvoid #POTS #Dysautonomia #MCAS #BostonMarathon

Incidentally, this is why you should pursue a #hEDS diagnosis if you meet the criteria - even if you aren't impacted much NOW, your risk factors for early arthritis, increased rheumatological complications etc are massive in comparison to non-hypermobile ppl, & treatment options very diff!

The Beighton Score as a measure of generalised joint hypermobility - Rheumatology International The Beighton Score (BS) is a set of manoeuvres in a nine-point scoring system, used as the standard method of assessment for Generalised Joint Hypermobility (GJH). It was originally developed as an…

The Beighton Score as a measure of generalized joint #hypermobility (a review) 2021 by Malek, Reinhold, Pearce buff.ly/2Syq5uV

#EhlersDanlos #EDS #hEDS #HSD #Fibromyalgia #fibro #Meded #FOAMed medicine #NEISvoid #MedTwitter #Doctors #Rheumatology #Genetics #MedSky

Promotional graphic for an EDS Awareness blog post on an orange background with a large photo and text blocks. At the top left, a white rounded rectangle says “New Blog Post.” At top right a circular logo reads “EDS Awareness” and“Ehlers-Danlos Syndromes.” In the central photo, a group of people are walking outdoors on a stone-paved area in front of a large building with tall stone columns and doors. Several people are carrying cardboard boxes. One person is seated in a wheelchair holding a box. Main headline below photo: “Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use”. Body text: “Run Away, Netflix’s latest Harlan Coben adaptation has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user.” At bottom left is a rounded button that says “Read More” with a right-pointing arrow icon. Website text at the bottom :“www.chronicpainpartners.com”

Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use

www.chronicpainpartners.com/netflixs-run...

#EDS #hEDS #HSD #Zebras #Spoonies #Disability #DisCo #MedSky #MedX

Had wild plans for a new week, new start kinda deal with returning to morning walks and adhering to a schedule…a night of next-to-no sleep and high pain has thrown those plans out the window. A challenge of this stupid condition is the constant need to be adaptable. #hypermobility #eds #hEDS

#hEDS superpower: my 40 year old skin is fucking flawless without the face-lifts my mother had at this age

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 one resonates with you?

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

Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology - PubMed Hypermobile Ehlers-Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study aimed to identify proteomic signatures associated with hEDS to define underlying pathophysiology and to inform objective diagnostic strategies with therapeu …

#EDS #hEDS #ChronicIllness #MedSky findings challenge view that they solely impact connective tissue; they innate immune dysfunction. pubmed.ncbi.nlm.nih.gov/40972649/

Ein beiges, gehäkeltes Bärchen, stehend mit einem lilagrün geringelt Anzug an.

#Handarbeitsclub
Leben mit #DIS, #hEDS, #kPTBS

So, das 2. Tierchen für das jüngste Enkelchen (3,5 Monate alt), ist fertig.
Ich liebe es, diese Wesen zu häkeln. In 2 Wochen bekommt sie es live von mir, freu mich schon sehr auf alle 6 Enkelkinder (und deren Eltern 😅).

Long night of tossing, turning, & wicked shoulder pain. As I tried to find a position I could fall back asleep in, I kept deliriously repeating to myself that my biggest battle is against giving in to the urge to curl my wrists into little t-rex arms
#NEISvoid #hEDS #chronicpain