#ehlersdanlos — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #ehlersdanlos, aggregated by home.social.
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CW: open letter about that dubious Telegraph article
From the Overlapping Illness Alliance:
"We are asking The Telegraph to review the framing and factual basis of the article and ensure future coverage of complex chronic illness and disability draws on appropriate evidence, clinical expertise and the voices of people directly affected. ...
"These issues deserve scrutiny. But that scrutiny should focus on the evidence, gaps in care and research, and the systems that are failing people, rather than questioning the legitimacy of those living with illness."
#disability #ableism #media #Telegraph #PoTS #MECFS #LongCovid #EhlersDanlos #MastCellActivationSyndrome #EpistemicInjustice
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@AAKL
The medical community keeps finding links, declaring one causes the other, then eventually back tracks all while ignoring the probability that ADHD and gut symptoms aren't related directly but are both symptoms of Ehler's Danlos... But god forbid a doctor think of a zebra when they hear hoofbeats. Even there "myth" that cracking your knuckles leads to arthritis is busted without ever stopping to realize if you have EDS then your more likely to crack your knuckles (and other joints) and also have arthritis earlier than most.Bottom line: Start researching "rare" diseases and you'll start finding a ton of interesting connections and help make countless lives better.
I'll get off my soapbox, sorry.
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https://www.europesays.com/it/654035/ Sei sempre stato “snodato”? Quando quella strana flessibilità può diventare un problema di salute #BbcNews #EhlersDanlos #GeneReviews #Health #HypermobileEhlersDanlosSyndrome #IpermobilitàArticolare #IT #Italia #Italy #NCBIBookshelf #nhs #Salute #SindromeDiEhlersDanlos #TestGenetici #TheEhlersDanlosSociety
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The prevalence of cardiac symptoms in Ehlers-Danlos syndrome and hypermobility spectrum disorder: a pilot study. - Abstract - Europe PMC
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Excessive Hypocapnic Cerebral Vasoconstriction in Hypermobile Ehlers-Danlos Syndrome Assessed With Real-Time Magnetic Resonance Imaging During Lower-Body Negative Pressure. - Abstract - Europe PMC
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This is a terrible article.
“Why do Gen Z females, apparently unlike every generation before them, have strangely unstable bodies that intermittently require support?
“When you dig into their explanations, a few officially medical-sounding words tend to recur: postural tachycardia, joint hypermobility, fibromyalgia, chronic fatigue. #EDS #POTS #EhlersDanlos
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Naples woman discovers sleep position linked to multiple strokes | Gulf Coast News
20 Feb 2026
https://youtu.be/Stk5jMtlBSopossibly of interest to people with #EhlersDanlos and #CraniocervicalInstability
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CW Medical gaslighting post with mention of needles and MRI.
I just saw a specialist for lower back pain that radiates into my leg with sensory changes. He did an EMG.
His solution? He says he knows where it is (L4) and said an MRI would come back abnormal but that doesn’t matter?? He told me it’s not worth an MRI because he knows where it is and “I need to know what I’m getting myself into with an MRI.” Further, that a 4” needle for a steroid shot is what they use for these things, so I need to beware if I choose this path. (I waited 6 months for this btw.)
Choose. This. Path?! I didn’t choose to have #EhlersDanlos and a ton of other painful medical conditions. I’m doing my best here to live a good life.
WHAT THE FUCK BRO.
I’m nearly to the point of no longer asking any of these doctors for help because it’s all all deny, dismiss, and diffuse — never diagnose and help.
Tired. So tired of this.
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Hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: patient experiences, disability and implications for rehabilitation. - Abstract - Europe PMC
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CW: diy cannabis coffee
sliced up a cannatonic strain (thc 0-1%, cbd 12-20%) cause vaping makes my mouth feel weird and toking makes brain bad
it took maybe 5 min for this to make my coffy stinky. :blobcat_glare: i have had one sip and shall now wait several days for effects
#cannabis #longCOVID #EhlersDanlos #EDS #ChronicIllness #disability
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Welp, #EhlersDanlos is giving me grief again.
Starting to develop really REALLY bad pain in my hands' joints. Probably going to start with daily turmeric, but an appointment with the rheum is upcoming.
Wish I could nail down an appointment to a rheum right now :( For once, there are no nearby doctors with availability. Going to talk to my GP in a couple weeks...
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CW: medical, ~
some capsules are arriving this week and i just want them to get here already. this constant crashing while i am just trying to watch a show...its such a small thing and thats why it makes everything feel so hopeless. its a very small thing to want to do
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Lese einen Artikel zu Instabilität im obersten Wirbelsäulenbereich, wo sie am Kopf ansetzt mit Ehlers-Danlos Syndrom und mal wieder verbinden sich verschiedene Symptome logisch miteinander. Es wäre so geil, wenn man medizinisch betreut würde und nicht permanent wissenschaftlichen Kram zu seiner Krankheit selbst lesen müsste.
Und ich hab seit meiner Jugend Rückenschmerzen. Es ist halt echt absolut krass, dass ich immer alles selbst verstehen muss.
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I dislocated both of my hips deadlifting (thanks #ehlersdanlos ), so I'm in recovery and can't brag about what I lift anymore. But now my trainer has me doing endurance training, so I CAN brag that I just did 160 squats with 80 shoulder presses per side 💪. And some day not too far in the future I'll be back to lifting heavy with stronger stabilizer muscles.
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If you need an #EhlersDanlos #EDS geneticist expert, I recommend Dr Fran Kendall
She’s recommended by The EDS Society, Shes also a #Mito expert which many with EDS have, she does telehealth and takes insurance, does research, goes to the conferences etc https://www.vmpgenetics.com/
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P.S. “My doctor/geneticist uses/is OK with me using Invitae”
Is your doctor an expert #EhlersDanlos geneticist recommended by The EDS Society? Are they authors on EDS consensus criteria papers?
If not, they may have limited to no #EDS experience or basic outdated med school learning — see an expert!
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Patients must see geneticist experts in #EDS #EhlersDanlos or other conditions for complete, legit geneticist tests and care
Especially for types in dark genetics like #hEDS, aka types without a diagnostic genetic biomarker
So many with delayed care, wrong info, harm from DTC! Save your money
4/4
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I’ve warned #EhlersDanlos #EDS patients for many years to not waste money/time on DTC tests
Predatory ads from DTC companies made more clinicians and patients use DTC
LabCorp acquiring Invitae and non-expert clinicians using invitae does NOT solve the above issues, it only worsens them
3/4
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DTC issues:
1) don’t test for all #EhlersDanlos types with diagnostic genetic biomarkers
2) only have genetic counselors, not expert geneticists in #EDS (or whatever else you’re testing for)
3) data is incomplete/wrong
4) no report or an incomprehensible one due to 3 so doctors can’t use it
2/4
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Do NOT use Sequencing, Invitae, 23&Me, other direct to consumer genetic tests for #EhlersDanlos or other conditions
#EDS and #Mito biogeneticist Dr. Fran Kendall discussed pitfalls involved in
DTC companies: https://youtu.be/0h3kLpsd_5s?si=7SmR3F4wxq1QQ-rO1/4 🧵
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My colon is subluxing my ribs. Wonderful. Well, at least it isn't stuck between rib and hip anymore.
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My body struggles to deal with a single full moon let alone 2 in a row
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Anyone have an office chair they can sit in for prolonged periods (ideally more than an hour)? Also open to non-conventional options. My current option really aggravates my lumbar pain. :meow_pain:
#hEDS #ehlersdanlos #hypermobility #disabled #disability #chronicillness #chronicpain
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I'm basically a hot mess, emphasis on hot and emphasis on mess.
Really wish somebody had helped me figure this out 30 years ago.
#EDS
#hEDS
#EhlersDanlos
#hypermobility
#BendyBody
#BendyGirl
#ChronicIllness
#ChronicPain
#bendy
#ouch2/2
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Golden Girls S05E05 talking about Chronic Fatigue Syndrome in 1989 explains me in the 2010s before getting an Ehlers Danlos and POTS diagnosis. Hell, it still explains how I feel now sometimes. I was lucky to have received the diagnosis before health care became so prohibitive in the US.
But here's the big thing... That was 1989 and little has changed with doctors not expanding their knowledge. Ehlers Danlos is most often misdiagnosed as Hypochondria or CFS and many doctors who understand EDS think CFS is the same thing.
Technology may be advancing but compassion is not. We are going backwards when it comes to compassion and access and people will remain sick and never understand why.
#ChronicIllness #EhlersDanlos #POTS #ChronicFatigue #HealthCare
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Just did a big stretch and heard grinding noises from every bit of connective tissue in my chest. Yuck.
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CW: Medical venting
I've been sick for almost a month now. With my histamine issues it's possible that a lot of this is weather vs sinuses but the cough is unlike anything I've ever had... At times I cough myself into a grey-out. Had a visit to the ER during this and x-ray and labs looked OK and they seemed to not be concerned but at what point does this become something that is concerning? Sadly whenever that point arrives it'll be a referral to a specialist that I can't afford and my insurance won't cover... And I'm not sure if I'll even have insurance next year (I'm procrastinating logging on to the marketplace due to anxiety of the whole situation). I honestly don't know how much longer I can keep this up.
Anyone else had ongoing cough and congestion like this?
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Vous avez le #SED ? #EhlersDanlos
Des exercices spécifiques dédiés aux patients du SED existent, et ils sont désormais accessibles en français
https://seapairaidance.blogspot.com/2025/10/traduction-protocole-muldowney-partie-13.html
Copiez le, partagez le, passez le à votre kiné, à votre médecin, lisez et formez vous.
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...gissar att läkare såväl som allmänheten kommer vara lite mer pålästa om Ehlers danlos i fortsättningen?
