Medical PTSD is serious and the topic deserves more attention than it gets.
#BlogPost #MedicalPTSD #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth 💕 #Wellness
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#hEDs
Latest posts tagged with #hEDs on Bluesky
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Posts tagged #hEDs
Spring can be extra challenging for masties. Chinese medicine can help.
buff.ly/cxiajEs
#NewBlogPost #Spring #MCAS #EDS #hEDS #POTS #HolisticHealth #SelfCare
💕 #Wellness
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Intuitive or mindful...which one resonates more for you?
#BlogPost #GutHealth #Nutrition #Diet #IntuitiveEating #Mindful #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare 💕 #Wellness
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Some strategies for dealing with gastroparesis.
#GutHealth #Gastroparesis #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness
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Question for my fellow #EhlersDanlos #hEDS people: Do you struggle more with the musculoskeletal or the soft tissue pain?
I find it harder to ignore the soft tissue even though I am constantly subluxing and dislocating.
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Seasonal living has extra resonance for those of us with MCAS.
#NewBlogPost #Spring #MCAS #EDS #hEDS #POTS #HolisticHealth #SelfCare
💕 #Wellness
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Not the same, but similar. Which resonates more for you?
#BlogPost #HealthCoach #EduCoach #Consultations #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth 💕 #Wellness
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"When healthcare providers do not know how mast cell disease looks in people of color, it can lead to a misdiagnosis or a missed diagnosis."
#BIPOC #AfricanAmerican #EDS #hEDS #MCAS #HolisticHealth #SelfCare 💕 #Wellness
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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
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They're similar but not exactly the same. Which resonates more for you?
#BlogPost #HealthCoach #EduCoach #Consultations #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #HolisticHealth 💕 #Wellness
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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
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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
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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.
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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?...
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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...
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Das passiert mir so schnell nicht mehr 🙄
#EhlersDanlosSyndrom #hEDS #SFN #SmallFiberNeuropathie #mcas #Motilitätsstörung #chronischKrank #rareDisease #selteneErkrankung #kptbs #dis #dissoziativeIdentitätsstörung #krankenhaus #gastroparese #slowTransitConstipation #parenteral
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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
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