Latest posts tagged with #hEDS on Bluesky
We remember our late visionary founder John Ferman while continuing to uphold his EDS Awareness legacy…
www.chronicpainpartners.com/in-memory-of...
#EDS #EhlersDanlosSyndrome #Hypermobility #hEDS #HSD #Zebras #Spoonies #Doctors
They're similar but not exactly the same. Which resonates more for you?
#BlogPost #HealthCoach #EduCoach #Consultations #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth 💕 #Wellness
ROAD-TO 2026 The International Consortium on Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Facilitated by The Ehlers-Danlos Society The New Global EDS & HSD Diagnostic Criteria is Coming December 1, 2026 The Ehlers-Danlos Society
Major Update Is Coming to EDS & HSD Diagnosis For the first time since 2017, the diagnostic criteria for all types of EDS and HSD are being updated. The countdown begins to publication on December 1, 2026 A new chapter in understanding, diagnosing, and caring for EDS and HSD.
Why This Update Matters The 2017 International Classification of the Ehlers-Danlos Syndromes changed how the world understands EDS and HSD. It has become one of the most widely cited publications in EDS research. Now, new research and global collaboration are shaping the next evolution.
What Will Be Published The updated work will be released in two phases: December 1, 2026 • Updated classification • Diagnostic criteria • Diagnostic pathways March 2027 • Best-practice care guidance • Assessment and management pathways
so excited this is finally happening this year! and i so appreciate the @ehlersdanlos.bsky.social Ehlers-Danlos Society! #EDS #hEDS #HSD
A promotional graphic with a calm lake landscape and text banners at the top and bottom. The main photo shows a person sitting on a rocky shoreline facing a wide, still lake, with tree-lined banks on both sides and early autumn colors (greens with some reds and yellows) under a cloudy sky. Text at the top on a teal background reads: “The Silence After Survival...” A circular logo at the top left reads: “EDS Awareness” and underneath: “Ehlers-Danlos Syndromes” Text at the bottom on a teal background reads: “Guest post by Debbie Hellenbrand” Below that: “www.chronicpainpartners.com"
The Silence After Survival - Guest post by Debbie Hellenbrand on surviving anaphylaxis with caring help for once…
buff.ly/o1idmfK
#EDS #hEDS #HSD #MCAS #masto #zebras #Spoonies #MedX
A skeleton is sitting in the back seat of a car looking at the viewer.
Today I was brave and entered a hospital since the first time almost dying last year. I got a lumbar puncture and it really wasn't bad at all. #chronicillness #heds
Also this guy was next to me in the parking lot and I loved him.
ADHD. Experiencing episodes of burnout and and suffering from C-PTSD including disordered eating, bullying and abuse. We explored how Charlotte copes and living with Elhers Danlos Syndrome. #ElhersDanlosSyndrome #hEDS #CPTSD #AuDHD #Autism #ADHD you can watch on YouTube youtu.be/FTAr01MmCnw?...
Cranio-cervicale Instabilität ( #CCI ) bei #hEDS bzw. Hypermobilität ist ein gelinde gesagt nicht unkomplexes Thema, gerade auch in der klinischen Evaluation.
Dass es Bemühungen wie diese gibt, hier Standards zu etablieren, ist höchst erfreulich.
link.springer.com/article/10.1...
Question for my #ChronicPain peeps: How do you keep your spirits up, when the medical community isn't helping you? I'm trying so hard, but I'm down, friends. Increasing pain daily + poor sleep = low spirits.
Any tips for maintaining mental health w. chronic pain appreciated. #Hypermobility #HEDS
New clinical research from the Chiari EDS Center of Mount Sinai South Nassau - outlining a protocol for standardizing the assessment of craniocervical instability (CCI) downstream of connective tissue dysfunction/hypermobile Ehlers-Danlos #EDS #hEDS #CTD #CCI t.co/PM9am03rHt
Ich bin nur froh,
Dass ich immer frühzeitig anfange mich zu kümmern,
So habe ich wenigstens ein kleines Puffer.
Das rettet mich mal wieder.
Auf jeden fall habe ich diesen Teil des Krank seins echt nicht vermisst 🙄
#ehlersDanlosSyndrom #hEDS #SFN #MCAS #kptbs #dis #piccline #Gastroparese
Wirklich klappt...
-Insbesondere nach gestern 🙄-
Und so ganz kann ich es immernoch nicht fassen.
Ich freue mich.
Und ich bin unfassbar dankbar,
Dass das medizinische Team das möglich gemacht hat
#EhlersDanlosSyndrom #Mcas #SmallFiberNeuropathie #Motilitätsstörung #kptbs #dis #hEDS #Gastroparese
Finally purchased some finger joint supports and compression gloves for my poor hands 🙌
I can’t invest in Nice Ones yet because ya girl has no money, but I’m hoping even these aids help 🍀
#hEDS #Hypermobility #Arthritis #Fibromyalgia #Disabled #Disability #ChronicPain #ChronicIllness #Spoonie
Yes, men have Ehlers-Danlos syndrome too. It's not only a women's issue by any means.
#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness
A smiling woman sitting on an exercise ball with arms outstretched, wearing a white tank top and black shorts. There is a cat lying on a nearby chair with a striped blanket. Behind her, banners on the wall say "AWOL Zebra." On the table next to her are towels, some white models or tools, and a glass. The top of the image displays the website "www.chronicpainpartners.com." Text at the bottom reads: "Interview with CHristie @AWOL Zebra" In the lower right corner is a logo that says "EDS Awareness Ehlers-Danlos Syndromes."
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS
buff.ly/ofignWQ
#EDS #EhlersDanlosSyndrome #Hypermobility #HSD #hEDS #Zebras #Spoonies #NEISvoid #ChronicIllness #Patients #Support
You may have heard of it as astragalus but it's a Chinese herb and the name is huang qi.
#BlogPost #HerbalMedicine #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare
💕 #Wellness
Herbal medicine is a jewel in the crown of Chinese medicine. Japan's modifications of it are a fascinating topic of its own.
#HerbalMedicine #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare
💕 #Wellness
We have not, but we have checked out and used others. 😊 There are quite a few health tracker aps out there—Pretty awesome!
For folks who don't know CareClinic: careclinic.io/features/
#healthtracking #chronicillness #raredisease #EDS #hEDS #healthcare
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it
www.chronicpainpartners.com/cerebral-ven...
#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Mehr an.
Aber nach all dem Hin und Her,
Dem immer wieder Hoffen und dann dennoch
"Auf die Fresse fliegen"...
Fühlt sich das gerade echt scheiße an.
Und soo weit weg von erreichbar...
#EhlersDanlosSyndrom #hEDS #SFN #SmallFiber #SelteneErkrankung #rareDisease #kptbs #dis #mcas #Motilitätsstörung
Das passiert mir so schnell nicht mehr 🙄
#EhlersDanlosSyndrom #hEDS #SFN #SmallFiberNeuropathie #mcas #Motilitätsstörung #chronischKrank #rareDisease #selteneErkrankung #kptbs #dis #dissoziativeIdentitätsstörung #krankenhaus #gastroparese #slowTransitConstipation #parenteral
Weniger greifbar...
Das fällt mir so schwer einzuordnen...
Zumal ich an sich mir nichts mehr wünsche, als endlich nach Hause und zum #Punktehund zu können...
#EhlersDanlosSyndrom #hEDS #SFN #SmallFiberNeuropathie #mcas #kptbs #dis #dissoziativeIdentitätsstörung
#rareDisease #SelteneErkrankung
Viiiiel länger als geplant
-plan waren ca. 8 Tage-
Ich hoffe so sehr, dass nun "einfach" mal eine Weile zuhause sein möglich ist...
#EhlersDanlosSyndrom #hEDS #SelteneErkrankung #rareDisease #SmallFiberNeuropathie #MCAS #Piccline #Parenteral #chronischKrank #kptbs #dis #selteneErkrankung
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 Hellenbrand family of four standing together outside next to a military-style vehicle. The family includes a woman with short red hair, wearing glasses and light green clothes, a man in a maroon hoodie and jeans, a boy in a suit and tie with white sneakers, and a girl in a long pink dress with glasses.
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family in the Netherlands
buff.ly/puQVunj
#EDS #hEDS #HSD #Hypermobility #EhlersDanlosSyndrome #Zebras #Spoonies #NEISvoid #Medicine #Doctors #Nurses #FII #MedicalKidnap #MedSky #Genetics #Autism #ADHD
Ich fühle sehr mit dir... 🫂
Habe zwar "schon" mit 25 eine #hEDS Diagnose
-und damit auch den Hjnweis auf sie schlechte wirkung von Lokalanästhesie bekommen-
Aber für mich war es am Ende auch "zu spät" Um eine menge Gewalt zu vermeiden, die dadurch entstand, dass man mir nicht glaubte, dass diese
Ein Gedanke zum #Weltfrauentag.
Es gibt ja immer wieder das Argument, ME/CFS wäre, weil psychosomatische Erkrakungen bei Frauen häufiger sind, psychosomatisch.
Was, wenn das nur so wäre, weil #POTS, #MECFS, #MCAS und #hEDS selten diagnostiziert werden?
www.thelancet.com/journals/lan...
People with #hEDS… *Literally* All of my bones slip out of position in my body. Eg, my spine slides forwards & backwards, left & right & I can push it back. Not the joints subluxing, the entire spine sliding (looks like mild scoliosis). Thigh bones slide.
Anyone else have this, & what’s the answer?
LOL - I slept like that. Only recently connected it’s likely related to #hypermobility #hEDS. Cats & bunnies are hypermobile too. 😸
