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

I’m tired of this grandpa 😭

#chronicillness #chronicpain #heds #ehlersdanlos #ehlersdanlossyndrome

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

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

#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

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

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

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

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

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

buff.ly/9sZKVdD

#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:

buff.ly/SOlLwKE

#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