#heds — Public Fediverse posts

The prevalence of cardiac symptoms in Ehlers-Danlos syndrome and hypermobility spectrum disorder: a pilot study. - Abstract - Europe PMC

https://europepmc.org/article/MED/42081697

#EhlersDanlos #hEDS #POTS

Excessive Hypocapnic Cerebral Vasoconstriction in Hypermobile Ehlers-Danlos Syndrome Assessed With Real-Time Magnetic Resonance Imaging During Lower-Body Negative Pressure. - Abstract - Europe PMC

https://europepmc.org/article/MED/42568068

#EhlersDanlos #POTS #hEDS

*me resting*
*stands up to walk to bathroom*
My hypermobility/hEDS: “btw you’re VERY aware of your kneecaps, aren’t they a lil loose???”

pls make it stop #hypermobility #heds #ActuallyAutistic

Symptom-conditioned prediction of comorbidity in the hEDS-POTS-MCAS triad - Abstract - Europe PMC

https://europepmc.org/article/PPR/PPR1287295

#hEDS #EDS #POTS #MCAS

This one is very jargon-heavy for me, I would love someone to provide a plain-language summary!

This summer has been so rough in the #Edmonton area with all the rain. I've been getting a lot of migraines, pain, and fatigue that has been hard to deal with. I actually splurged on some compression socks even though I haven't worn them for a couple years. They definitely help with the swollen feet and dizziness.

My mother-in-law gave me some old walker she had laying around outside, I swallowed my pride and I took it to K-days. (the place where I first suspected I had POTS in 2019, I went on a swingy ride and was screaming because my feet felt like they were going to explode) It was amazing to be able to sit or lean on something whenever I got dizzy or sore. There was not a lot of seating this year, especially at the bbno$ concert, so I was thankful I had it. I was not in as much pain the next day as I could have been, I think. It's hard to admit I need stuff like that, but it made one of the few days I could get out and have fun 100x more enjoyable. So fuck what anyone thinks, I'm using my walker when I need it. (and am looking forward to decorating it, it's pretty scuffed up)

#pots #heds #mcas #dysautonomia #chronicallyill #yeg

*Known disability, it’s possible to be disabled or have infection risk factors you don’t know about.

I started this in December and only finished it last week. Crip time!

Hey EDS frendos, anyone tried the Body Braid?

Potential client reached out with a YT video on how to make one and asked if I'd be able to. Looks doable, and now I'm just kinda curious if they work!

#hEDS #EDS

Please share, if you can. I'm so deeply sorry & embarrassed. I'm desperate and not doing well without my medications. 😖
#NEISvoid #hEDS #chronicpain #marfansyndrome #EDS #MECFS #POTS #MCAS #AuDHD #actuallyautistic #ADHD #disabled #longcovid #mutualaid #spooniechat #chronicillness #crowdfund #emergencycrowdfund

RE: https://plasmatrap.com/notes/aoctlai1vp

Distinct sensory and autonomic involvement in hypermobile Ehlers-Danlos syndrome compared with idiopathic small fiber neuropathy: a multimodal study. - Abstract - Europe PMC

https://europepmc.org/article/MED/42399338

#hEDS #SFN

@spiegelmama
On my dad's side of the family nearly every male died of an aneurysm or had an aneurysm that was found when they died. This was the biggest determining factor that led to my diagnosis (I was diagnosed unspecified EDS with the old criteria). It's important to remember, however, that EDS is a spectrum disorder and unless you have family history or have vascular EDS (if you live beyond 40 you almost certainty don't have vEDS) I wouldn't freak out. Checking is always a good idea though with ultrasound, CT-A, etc just in case.

#hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

RE: https://mastodon.social/@czds/116707089342827924

Oh goodie. Another health disaster that might spring from my lousy connective tissue. 😕 #hypermobileEhlersDanlosSyndrome #hEDS #hypermobility

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

Have you ever wondered about rheumatoid arthritis but were afraid to ask? Do you want to know my story? #ChronicIllness #ChronicPain

First: RA is an autoimmune disorder where the immune system attacks healthy joint tissue. It’s debilitatingly painful, causes joint deformation, and is difficult to treat in some (lucky me). It can affect organs, too.

Second: Osteoarthritis is common, age related, and happens gradually over time to most who live long enough or have had joint injuries. It’s not autoimmune, it occurs naturally.

Let me show you with these two photos of my hands:

The first one was taken in 2017 when I *first* had symptoms but was dismissed for the next 6 years. At that time, I was diagnosed with #hEDS connective tissue disorder (correct) and it wasn’t further investigated as autoimmune pain (wrong). I finally got diagnosed with #RA in 2023.

The second one was taken this morning. This hand now has constant pain and stiffness. I’m on 3 different medications trying to keep my disease under control.

I’ve used my hands my whole life to enjoy many different hobbies (sports, music, photography). It’s been devastating to lose, but I’m doing my best.

🫶🏻 TY for reading.

🔥 psa for anyone taking quercetin on a regular basis 🔥

this may be common knowledge and just previously unknown to me, but i've just today discovered that quercetin chelates iron/blocks iron absorption and can lead to anaemia and/or low ferritin levels. so if you're taking it regularly, please have things checked!

(and if ferritin is low enough, just stopping quercetin won't be enough to bring it up and possibly neither will otc iron supplements, so please do get some numbers / help if necessary)

i've just been in tears from finding this out as quercetin is one of the few things that helps me at all, and given i have no medical care, one of the few things i can access. i've been taking a decent dose daily for the past ... 13 years? but my ferritin was on the floor at my last blood test a year ago (ofc i couldn't find anyone to do anything about that). and i can't even take oral iron, not that it would help if i could, given my levels, but. yes. yay :blobsweatsweary:

take care people and good luck :Blobhaj_Heart_Rainbow:

#MCAS #POTS #hEDS #LongCovid #allergies

Today is #MEAwarenessDay!

The Swedish study finding 1 in 5 people with hypermobile Ehlers Danlos Syndrome #hEDS or hypermobility spectrum disorder #HSD (which the EDS Society found are the same) have myalgic encephalomyelitis/chronic fatigue syndrome #MECFS #pwME: https://pmc.ncbi.nlm.nih.gov/articles/PMC7485557/

The study found 20% #pwME studied had #hEDS and 50% had #HSD

This study was prior to the 2026 reclassification merging HSD and hEDS

Given 2026 changes, 44 hEDS + 115 HSD = 159 hEDS of 229 is 69.43%

guyyyyys i've just hit my first #hEDS milestone! There's a stretchmark on my side and on one of my hips.

#hEDS spoonies: have yall noticed that your hEDS symptoms get worse with age? Im nearing 30 and idk if im just more aware or sth, but i swear i can feel my arm subluxing sometimes #disabled

Pour commencer par un truc intéressant : étude[1] rétrospective sur des dossiers médicaux qui cherche à évaluer la prévalence de SEDh/HSD (syndrôme d'Ehlers-Danlos type hypermobile/trouble du spectre de l'hypermobilité) chez les personnes trans/nb. Elle trouve :

• prévalence de 2.62% chez les personnes transmasc
• prévalence de 1% chez les personnes transfem
• pas de différence significative dans la prévalence vis-à-vis de la prise ou non de TH

La même étude trouve une prévalence de 0.16% chez les femmes cis et 0.04% chez les hommes cis ; ça fait presque 20 fois plus de chances d'avoir un SED chez les personnes trans (OR 18.45).

Ça recoupe quelques autres études qui montrent une prévalence importante de SEDh chez les personnes trans :

• étude[2] dans un centre médical prescrivant des TH qui trouve une prévalence de SEDh de 2.7% chez des personnes trans
• étude[3] dans un centre médical trouvant une prévalence de SED de 2.6% chez des personnes trans ayant eu une opération de transition (72% SEDh, le reste pas spécifié ; ~70% transmasc). Pas de surrisque de complications postop ou de réopérations dans ce groupe, pour principalement des mammecs, qqs orchis, et d'autres opés.
• étude[4] dans un centre pédiatrique de prise en charge du SED trouvant une prévalence de dysphorie de genre de 17% chez des ados avec un diag de SED(h)/HSD

[1] : Prevalence of Hypermobile Ehlers-Danlos Syndrome in Transgender and Gender Diverse Individuals: A Retrospective Cohort Study. Tabernacki T et al., 2025. https://doi.org/10.1177/23258292251382250

[2] : The prevalence of hypermobile Ehlers–Danlos syndrome at a gender-affirming primary care clinic. Stein T et al., 2025. https://doi.org/10.1177/20503121251315021

[3] : Ehlers-Danlos syndrome: prevalence and outcomes in gender affirming surgery - a single institution experience. Najafian A, 2022. https://doi.org/10.20517/2347-9264.2021.89

[4] : Gender dysphoria in adolescents with Ehlers–Danlos syndrome. Jones JT et al., 2022. https://doi.org/10.1177/20503121221146074

#EDS #hEDS #trans #hypermobility #hypermobileEhlersDanlosSyndrome #HSD

As a #disabled #gardener…it is really frustrating when the weight of tools is not listed online when purchasing ⛏️ :meow_cowboy:

#gardening #HEDS #fibromyalgia #hypermobility #badback