#ceds

[thelastwhimzy]

i really wish that ehlers-danlos syndrome wasn't basically just thought of as the "bendy" disorder. firstly, there are more than 13 types of eds, and they all have varying relations to and degrees of hypermobility. secondly, eds are a collection of congenital connective tissue disorders - connective tissue makes up a vast majority of your body and, because of this, eds, hsd, and other congenital connective tissue disorders like loey-dietz, marfans, stickler syndrome, and osteogenesis imperfecta are multi systemic.

having eds or another connective tissue disorder is SO much more than just some flexibility and it's especially frustrated that they're often thought of solely in relation to that one aspect of them because it leads a lot of people down the path of misdiagnosis.

as an advocate and educator regarding ctds and especially eds, i have spoken to SO many people who simply wrote the possibility of them having a ctd like ehlers-danlos off simply because they aren't flexible. it's such a dangerous misconception and really frustrating to see especially given the fact that the muscles of hypermobile people often overcompensate to make up for joint laxity, which can actually lead to a lack of flexibility/high tone/spasticity

so yeah, tl;dr: if you have a bunch of multisystemic symptoms that seem largely unconnected, look into connective tissue disorders. they're much more common than people think, frequently go under the radar, and can really wreck havoc on your body - ESPECIALLY when you aren't aware that you have one

[havensvik]

Ok mini rant, I keep seeing videos on tiktok talking about "signs and symptoms of EDS" or "things I did before I realized I had EDS" and then just listing symptoms of hypermobile type, there is 13 types... just cause hEDS is the most common type doesn't mean the other types dont exist. please if you wanna talk about signs of hEDS please specify that its hEDS you're talking about rather then just ehlers danlos in general.

This might sound like I'm just being a hater and I really don't want it to come across that way, it's more of an annoyance in that it spreads misinformation that all types of EDS have the same symptoms or as I've seen some people think, that there's only one type of EDS.

Im just a bit pissed off by it atm cause it seems the only type of EDS I really hear people talk about is hEDS, and I get why cause it's the most common type, but as someone with both hEDS and cEDS (thank you parents for both having a different type of EDS) it can get a bit tiring to never hear people talk about other types.

[scleracentipede]

Rare Diseases Day Comic 2025

(you can get a higher res copy right now for free on my website click here)

[thephilosopherspetcat]

Just because a certain, or popular disease "fits" your symptoms doesn't mean you have it.

I get that it can be hard to get a formal diagnosis, but until you do, PLEASE DONT SPREAD YOUR PERSONAL EXPERIENCE AS FACT AS FAR AS THE DISEASE GOES.

self-diagnosing for *personal* reasons is perfectly fine. if it helps you to just run with that diagnosis, privately, until you can have it confirmed or find the actual thing wrong with you, then go for it!

But please stop shouting to the world:

"Oh I have EDS and I experience xyz because of it!"

Because you are changing the perception of the disease to the public (healthcare workers included) by claiming that diagnosis, and you might be totally wrong.

• specifically for hEDS, I know so many people who have DIED from it and in the same day I hear a doctor tell me "EDS is just a tiktok trend..." and an hour later 50 comments on a tiktok video telling a stranger with hyperextended elbows that "you must have EDS! You're so flexible!" as if hEDS is just a flexibility issue and not the literal proteins in your body being malformed, rupturing organs, paralyzing intestines, and having your brain literally fall out of your skull.

Peace & Love,

a girly with cEDS who just read 20 posts under the ehlers danlos tag with varying degrees of "basically i have eds but also ive never actually been told that by a doctor, but here's my eds advice" (and a lot of that advice is actually horrible to give to someone with a collagen disorder).

[barksenji]

I've been pondering why I'm drawn to Killer as a character. I think he somehow mirrors my feelings about my body and health.

When considering disabled characters in One Piece, like Shanks or Kid (though there are more examples, maybe even better ones, lol), their disabilities play such a minor role in their lives that you might forget they even have one. It's not inherently negative, but it makes it challenging to connect with them in that sense because they don't truly experience the struggles.

Surprisingly, Killer stands out among the characters, showcasing the profound impact that eating the SMILE fruit had on him. He vividly portrays the hysteria and fear that can arise from losing control of your body, a part of yourself, whether through amputation or more abstractly, the loss of independence or freedom.

Killer is condemned to a lifetime of laughter; the effects of the SMILE won't be cured (maybe eventually they will, but I don't know). He copes, yes, but it's constantly going to be there. Sounds familiar? If you're chronically ill, you know.

Moreover, as someone dealing with dysphoria, there's a strong identification with Killer regarding the mask. The sensation of your face feeling so alien, prompting a desire to hide, isn't foreign to me; plenty of times I've wanted to put a bag over my head so I'd be able to just stop looking at my face.

In essence, Killer's character, encompassing his loyalty and more, evokes a powerful reaction in me. Yeah it sounds cheesy af I know, I'm autistic, what do you want from me, lol

[firminfollowing]

Me when my chronic disability is actually chronic and disabling:

[Image ID starts:

a white cat is screaming with an open mouth and it’s head turned to the sky.

Image ID ends]

[unheavenlycreatures]

hhhhhhhhhhhhh chronic illness venting shit under cut

omg we loveeee complaining about our body its amazing its my favorite <3

anyways. i am so fucking tired of having cEDS. i'm so tired all the time. i'm in so much pain all the time. i can never catch a fucking break.

earlier, i was just having a nice time talking with my partner when i suddenly felt something pop in my head and i collapsed onto my desk. no headache, no slurred speech, no numbness, just down. i'm terrified of brain aneurysms literally all the time--I know I'm at higher risk for them because all of my fucking everything is stretchy and fragile.

turns out, i managed to pop my occipital junction. per my mom, it's a thing that happens pretty often with EDS i've just managed to avoid thus far--you just pop the bone holding up your head. no big deal. i'm still dizzy, but i am wholly uncertain if it's because of the occipital pop or the hour long panic attack because i had no idea if i was dying.

because i don't know! i don't know what can kill me! i'm in pain literally constantly! i don't know what the normal amount of pain is! is this a life threatening medical emergency? or is it just a new and annoying symptom to add to the list? how do i tell the difference?

and i'm constantly finding new things wrong with me. my ribs pop out of place. my hips pop out of place. my fingers. my shoulders. my knees. constant abdominal pain. constant bleeding--there is never a time where i am not bleeding from SOMEWHERE. i have to be so careful handling paperwork for my job because if something tears, i'm bleeding all over these important forms, or my keyboard, or a coworker--so many times i've been mid conversation and looked and oh, oops, looks like i bumped my arm into something, grab me the wound kit i'm making a mess :) i'm covered head to toe in scars with no stories behind them. and that's just the external shit. until i went on my new meds a couple months ago, i was constantly at risk of going into hypovolemic shock due to the fact that i was passing palm sized blood clots every single fucking day for months.

sitting hurts. standing hurts. walking hurts, with or without a cane. lying down hurts. looking at screens hurts. reading books hurts. eating hurts! showering! having sex! playing a video game! holding a pencil! being hugged! driving! sleeping! breathing!

and i can barely process it half the time, because my fucking chiari malformation gave me a brain injury, so the fog and the buzzing is so so so high, and i have the fucking migraines, and hallucinations, not to mention all of the fucking. hand wave motion system shit my therapist is trying to help me ignore or otherwise deal with. and my immune system is fucked, and i never know if my MCAS is going to act up and give me a reaction to something, and i get sick so easy, and i'm slowly going blind in one eye for some reason, and my short term memory is fucked, and every time i get pneumonia my lungs are fucked even worse, and i just

i could handle it! i could, really! i'm functional (ish) most of the time! but i can't physically show I'm in pain, or people get weird about it! and i'm scared all the time! because i have no idea how long i have! i get so scared that my fucking hair falls out, and i feel sick, and the sickness makes it worse, and i can't manage my health anxiety because the chances of something actually being very wrong are so much higher for me than other people and if i'm not careful or if i don't pay attention it could be lights out and i just

im so tired

i wish i didnt have this. i wish my body worked. i wish i could do the things i love. i wish i could hold a thought in my head long enough to write right now. i wish i could go outside. i wish i could dance again. i wish i could sing with my whole chest. i wish i could try new things. travel. read. sit in the sunshine. talk about my daily life without having to add disclaimers that, actually, this is what a good day looks like.

and i'm so grateful to be alive. i didn't used to be. a lot of my life has been spent so miserable that i couldn't even comprehend what a life where i feel fulfilled looks like. now i wake up in the morning and i'm grateful for every day, even the bad ones--in part because I have no idea how many I have left. and i have people who love me and understand when i can't push through the pain to make things happen. and when i die, i wont have any regrets for how i lived, and what the experience of being me was like.

but there's so much more to experience and know. and i grieve so much that i'm going to miss out on a lot of it because my body is collapsing underneath me. and there is no version of me that isn't sick, and it doesn't helo anything to dream about what that person would look like.

but still.

[gleditsia-triacanthos]

because i feel like most of my posts are critical, here are some fun (?) things about having classical ehlers danlos:

1. the party tricks, including but not limited to:

- stretching my skin. my go-to technique is one hand on my cheek, one lower down on my neck.

- the splits.

- feet behind head.

- dislocating my shoulders. this sounds like hell, but it really doesn’t hurt too bad anymore and the reactions are priceless.

- any number of things with my digits. the only person who’s had me beat was a ten-year-old i babysat; she was able to bend her thumb BACKWARDS to touch the outward part of her wrist, then roll it in a full circle around.

2. success in performing arts. said party tricks, but paid.

3. i can tie my shoes without bending my knees.

4. dominating yoga classes (when i’m up for them).

eds isn’t an easy condition to live with, but there isn’t currently a way to change my COL5A1 gene. best to make lemonade when it’s appropriate.

if any other 🦓s see this, tap in!

[scifiisforgirlsgaystheys]

The only thing worse as a ✨💅chronically ill girlie💅✨ than being sick, is realizing you’re getting sick. No, this isn’t just allergies or a teeny cold or your period coming early like you’ve been trying to gaslight yourself into believing. This is a virus, and it’s about to get much worse.

And unlike most people with healthy bodies, you’re not going to be miserable for a couple of days but eventually fight it off. Your body is going to shut down. You are going to be in danger—go to the ER, be closely monitored, hooked up to dozens of machines and be drugged with dozens of medicines that trigger weird as fuck side effects danger.

And your usual symptoms related to your chronic illness, the debilitating ones that leave you in constant pain and fatigue, and render you a barely (if at all) functioning human being? Yeah those are about to get a hundred times worse. And they’ll distract the doctors because either

1️⃣ the doctors won’t believe you’re chronically ill (I can’t tell you how many times ER doctors have told me I can’t possibly have my ⁉️DIAGNOSED VIA DNA TEST⁉️ illness because “you’re only in your twenties, sweetie. it’s probably hormones or anxiety. 😘”) but still be concerned over these symptoms that aren’t related to your virus, and go down some rabbit hole, trying to treat the symptoms of your incurable chronic illness and ignore your current sickness you need immediate care for

or 2️⃣ tell you you’re not sick at all, and it’s probably a really bad flair up of your usual chronic illness (until of course the tests come back showing you’re positive for whatever it is this time, and then you’re back to option watered down version of the first option)

Oh, and insurance can only cover a teensy amount of the bill, so enjoy being thousands of dollars in debt 🤪.

I have never gotten a cold or flu or covid before and not been sent to the hospital by my PC or urgent care. On average, I am severely sick for at least two weeks, lose about ten pounds, and have a two to three month recovery period. This doesn’t include if there’s any additional complications like blood clots or muscle atrophy from being bed ridden.

Anyway, guess who just tested positive for the flu 😷♥️♥️🤣💅💅💅🫶💋

[sleeping-reverie]

Man I wish more was known about my specific gene and how it impacts EDS.

Everything I hear from everyone is different. It's it's own thing, it's classical, it's vascular, it's classical with more cardiovascular issues, it's classical AND vascular AND neither at the same time. Less than 1% of people with c or vEDS have my gene. And we don't know anything about what it does.

Idk. It's really hard sometimes. My current diagnosis is vEDS? (Emphasis on the ?) but that seems to change every time I talk to someone.

"Your gene is under vEDS in our hospital system so that's what it is."

"You have no history of aneurisms but aren't hypermobile enough for hEDS so we'll just say it's classical"

"We don't know anything about people like you, so we don't know what to expect."

I've read that people with my type tend to have arterial/aortic dissections and that's what it's known for. I got an MRA the other day and am waiting for my doctor to tell me how to interpret it but idk what to even hope for anymore. Feels like no matter what no one knows what to do for me.

Idk it's just so isolating yk?

[narrator-navigator-storyteller]

every time i see someone say "EDS" on a post that is very obviously specifically about hEDS i lose a year off of my lifespan

[octobercowboy]

if the genetic test comes back and i don’t have classical-like ehlers-danlos syndrome i have no idea what i would do

it explains even weird things that happened in my childhood that i still live with now.

it may also come back with vascular eds and i’m just trying to mentally prepare for that one.

[thephilosopherspetcat]

Happy last day of feeding tube awareness week, and for my last trick I will spill maybe the hottest take:

Feeding tubes aren't a big deal.

Its a plastic tube to your stomach or intestines that gives you nutrition.

Nasal tubes can be placed bedside. Uncomfortable? Hell yeah. Dangerous? No.

Surgical tubes are 1-2 incisions and a week of "ouch, fuck, dammit." Does it hurt? Yeah. Is it that big of a deal? No.

I don't understand the terror that doctors have around placing them. They keep this tool as the LAST resort for literally no reason. I know plenty of doctors who will wait until your organs are shutting down to even think about it. Mine did. And I have permanent liver damage because of it.

Starving is dangerous and serious and fucking terrifying.

A feeding tube is just a piece of plastic. Sometimes it rubs in annoying ways. You have to get it replaced. Some people get infections at the site. The tubing gets caught on door handles...

But none of them are being left to starve.

Truthfully, doctors withholding a treatment that is minimally invasive, with massive life-saving benefits to a person who needs it, is absolutely malpractice. That would be like refusing to give a heart attack patient treatment until their heart stops. The insanity is unreal.

[barksenji]

I am going to grab my colon and put it in a shredder, cook it and eat it like pasta.

I am going to put my uterus inside of a blender and use its remains as the fucking sauce.

The salt is coming from my tears because I. Swear. To. God.

I am going to cauterize my hemorrhoids with a clothing iron and then cut them off, there, you have the meatballs.

By this point my ass feels like anything but an ass and everything nearby looks like a car crash.

[carabanchelnet]

📌La jueza no cree a la pareja de Ayuso y ordena a la UCO investigar el “soborno” a un directivo de Quirón 📌Europa confirma que las indemnizaciones por despido improcedente en España son insuficientes 📌El SERMAS hace la vista gorda ante denuncias de supuestos acosos, prácticas laborales ilegales y utilización indebida de fondos en el Hospital Puerta de Hierro 📌Vecinos con movilidad reducida denuncian la deteriorada accesibilidad en el barrio de Vista Alegre en Carabanchel 📌Y Más… https://carabanchel.net

[henk-heijmans]

Untitled, 2025 - by "Ecce Ced", French