#Vascular Ehlers-Danlos Syndrome

[butch-reidentified]

do you actually have a genetic disorder??

how does it work whats it called

I have vascular-type Ehlers-Danlos Syndrome (vEDS - though many patients prefer to use VEDS for reasons discussed in the link at the end of this post). it's a connective tissue disorder with several subtypes, but vascular-type is the only type that's deadly. current typical life expectancy is like 48ish, but even then, that's if you take a certain class of medication that I can't take (makes my blood pressure so constantly and severely low that I become bedbound) - when I was first diagnosed with unspecified EDS, the lifespan estimates for VEDS were closer to 40 years. that doesn't necessarily mean I can't possibly live a good bit longer - there have been patients who've lived about as long as a typical healthy person, but there's no way to predict it or mitigate it. lifestyle, in this case, makes basically zero difference. I could be the fittest and healthiest lifestyle person on earth or be a couch potato who eats nothing but fast food and it wouldn't really mean much in terms of this either way.

I've posted before about my EDS (never in detail idt) & it's mentioned in the About Me section of my Pinned, but had avoided getting the test for VEDS until fairly recently - not fully intentionally, just got caught up in life and kind of already suspected based on certain traits and symptoms I have that are associated with the vascular type (including a history of SCAD*). it's actually good I waited bc they found a new variety of the gene mutation since my initial diagnosis that may be present in a whole 50% of VEDS patients!

*SCAD = Sudden Coronary Artery Dissection, often considered a type of heart attack, where your artery just zshlurps n pops a hole in it. I recently had read a few studies showing that female people, especially if otherwise broadly healthy, are more able than males to heal from SCAD without or with very conservative medical intervention (I don't even go to hospital atp for pretty much anything my body does, but I did briefly die once and have posted my NDE experience here before), however I'm struggling to find these studies all of a sudden. that said, the below AHA article mentions that "among patients with acute myocardial infarction, patients with SCAD have a lower risk of mortality, which is attributed primarily to their younger age, female sex, and low prevalence of atherosclerotic risk factors."

[gracethyomen]

Happy First of May!!

Hello! May is EDS (Ehlers Danlos Syndrome) awareness month! As a person with suspected EDS and with chronic symptoms, this is a very important topic to me. EDS is hard to diagnose, and many patients fly under the radar of healthcare professionals which can cause them to suffer lack of treatment and forces them to live with their painful symptoms.

More Information about EDS and associated variations has been attached below and the infographs were originally found on an instagram account that I follow at the username the_chronic_chronicles

[dr-robert-chase-apologist]

when you're watching House and the patient has your diagnosis:

[our-ehlers-danlos-experience]

Welcome to our-ehlers-danlos-experience!

A blog for all folks with any type of EDS to share their experiences, vent, celebrate, etc.

Disclaimer: I am not a medical expert. This blog is not intended to replace or replicate medical advice.

Ableism may be discussed and will be tagged. Moderate NSFW allowed as long as it's not too graphic. No party trick photos, please.

Mod uses she/xe pronouns.

Learn more about EDS.

Inspired by blogs like @ocd--culture--is @our-arospec-experience @our-aplatonic-experience @our-queer-experience @aegosexual-moments ~

[korya-elana]

I stg if I went through this many horrors and traumas and finally escaped them in my 30s and building a real life to dying from the illness my doctors won't admit I have I will literally crawl back from the earth and make it everybody's fucking problem

[hannahcrazyhawk]

Ehlers-Danlos syndrome things:

My left foot rests on the side of my ankle while my right leg is perched on my bed. I often look at my odd ways of weight bearing on bent joints and think, "Why did it take 39 years to be diagnosed with EDS." 🦓

[imsickofcoveringup]

Please check out my update. I'm heartbroken. I was in the hospital and everything is getting worse and scarier. I told my family and they didn't care. They get defensive and upset when I try to ask for help and I'm realizing more and more how little I mean to them. It would mean so so much If y'all would read and share my story. I've lost so much to my illnesses. But I just want to share positivity and love.

[xxtowardsthesunxx]

I haven't posted much here in a while; wanted to post an update.

recently, my dr told me he now suspects I do have eds, rather than mctd. so now we're trying to get me into a rheum and have genetic testing done. the gp suspects ceds, while the np has some suspicion it could be veds. it feels really weird to have this curveball suddenly thrown at me, five years into my journey.

I'm trying to engage more in the online community, so this is my official introduction post for edsblr. so. hi 👋

[crambery]

is there anyone on here that has vascular eds pls😭😭 i need someone to relate to 😞

[oliveasaltylife]

Well, it’s finally happening. My parents are withdrawing a portion of my monthly financial support. My husband has been out of work since early October and he finally found a job, but isn’t able to start until January.

We desperately need help to be able to make rent, pay utilities, and get food on the table on top of other monthly bills that can not go unpaid. I have spent the past 2 years begging my parents for the help they explicitly promised me when they found out my FIL gave me COVID in January 2022. I never recovered and still have a whole host of other complex health conditions that was significantly exacerbated. I still don’t have a definitive answer whether or not Long COVID is part of it because it reactivated a latent Bartonella infection that I got who knows how long ago. Not to mention the connective tissue disorder, dysautonomia, MCAS, chiari, and tethered cord I was already dealing with pre-infection, just undiagnosed and not taken seriously. My parents offered to help me financially because I had to stop working. I went back to work after my infection cleared, even though I know I wasn’t fully recovered, and relapsed very hard in May of 2022. That was when the full financial assistance from my parents really began, and they continued to try to convince me they would never turn down helping me.

For the next 6 months my mother berated me and made it known that she resents me because she wasn’t able to get “her pool” installed in the summer of 2022 because she had to help me, her eldest daughter. At one point she made me choose between my health and wellbeing or my sister’s (she is also disabled, but lives at home, and receives SSDI, which I do not qualify for). She ate her words that time. But they’ve been trying to get out of helping me ever since they offered. And now, my parents have taken it upon themselves to lower my financial assistance after my husband lost his job, and without even consulting me. They texted my husband, never made contact with me, and when I called them out on it made excuses that I don’t talk to them often enough. (Huh, imagine that. I don’t really want to contact my abusive parents, but it sure does highlight some of the abuse that’s gone on my entire life). I am not in a position to be able to turn down what they are giving me, though I can not wait until the day I can officially become no contact.

I need help. I’m exhausted from trying to fight for assistance I was promised by my own parents in addition to the extreme exhaustion that comes with living with complex chronic illness. I don’t know what to do at this point. I’m going to leave my Venmo link in hopes that maybe some of you are in a position that allows you to give assistance. If you are not able to, please share this. I don’t have a platform on any of my socials and really do not feel comfortable sharing it on Facebook where I have family members who also choose to ignore pleas for help.

[softspokensearcher]

Introduction Post

Hi, I'm Victor, I'm an 19 yr old man. I plan on using this blog as somewhat of a diary, and just as a means of recounting my life.

I am an epileptic, physically disabled man struggling with mental health recovery.

This blog will likely recount my struggles with

Physical illness

Depression

Seizures / health events

Relationships / family

And other life events

I'm always happy to chat. This is a side blog for @killmeslowlypleaze so I cannot follow back directly from this blog.

I want to be VERY clear that this blog is not PRO or ANTI eating disorder-- however, I would appreciate it if it was not discussed.

I will follow anyone's DNI without question, as I understand how triggering some of these topics can be.

[octobercowboy]

In case anyone was curious to how my genetics appointment went…

I think it went fairly well. They are suspicious that I have classical or classical-like ehlers-danlos syndrome based on my symptoms as well as my family history. They even asked if my parents would like a genetic test as well.

Along with that they also looked at my full body MRI with contrast as well as several echos and other heart imaging that i’ve had done and they are also concerned about vascular ehlers-danlos syndrome.

I walked in knowing it’s possible that my imaging matched up with vEDS but I never thought that a doctor would think the same. I thought I was overreacting to my scans but this doctor found so much more wrong with my heart than the specific cardiologist that is the “best in the state”. All I could tell is that it didn’t look like the healthy echocardiograms I was looking up.

i’m worried for my health but soon enough I will have answers. It takes about 4-6 weeks but I will have answers.

All I can do is wait.

as someone who is suspected to have two different types of EDS (august first is that genetic appt!), none of which are heds as well as having several other disabling conditions i just need to say one thing bcs im a little upset

a lot of people have decided to start treating heds like it is some life ending thing. i don’t mean that it doesn’t feel life ending to you i mean people are on here claiming that they will die as soon as 35 because of it heds only and specifically.

to all of you doing that shit: fuck you

if you do any amount of research you will learn that only vascular EDS has a lifespan of 45-55 years depending on the study. I have no idea where this 35 years came from that i see people spouting but it’s incorrect and i am done with it.

people with classical EDS along with h-eds have normal lifespans generally.

glad we could all clarify that.

[notjustanyannie]

But Aston was suffering from EDS, a genetic disorder that members of her family also had. Although EDS generally affects connective tissue — like joints and blood vessel walls — the vascular type, which Aston was thought to have had, is a more serious form of the syndrome that the Mayo Clinic says can “cause the walls of your blood vessels, intestines or uterus to rupture.”

[vobomon]

Hazbin Hotel Theory: Sir Pentious had Ehlers Danlos Syndrome when he was Alive

Ehlers Danlos Syndrome is a genetic condition that was discovered at the turn of the 20th century.

This condition shows itself through extreme flexibility, loose joints that occasionally dislocate, stretchy velvety skin, and abnormal scar formation when injured. There are 13 subtypes that affect different areas of the body and make them prone to injury.

Now... what would that condition translate to looking like in a sinner? Well if you're like me, you would think that being extremely flexible and having super sensitive skin... would probably result in a snake-like sinner.

Due to the fact that there are 13 subtypes of the condition, I believe that Sir Pentious suffered from type 4 aka Vascular EDS which made his skin look transparent (for example, being able to see the blood vessels through the skin) and bruise easily. This reminds me of a snake shedding their skin and how fragile they are in that state.

The body is affected in its appearance thanks to type 4 EDS. Typically people with this specific subtype will have large eyes, sunken-in cheeks, and a thin nose with thin lips. Like-wise, they will be pretty short and have thin scalp hair.

With this in mind, type 4 EDS is considered to be rare-- even among the condition that is rather rare in itself. So its possible that Sir Pentious had a different subtype but the traits of type 4 seem to fit a snake-like sinner.

A trait is that common among all subtypes of EDS-- is constant, chronic pain leading to the person often needing a cane or wheelchair.

Its possible that Sir Pentious (as a human) was confined to a wheelchair thanks to this pain. Which would have also translated to him becoming a snake-like sinner when he died.

And how do I think he died?

Well if he had type 4... then death would have come thanks to age. People with this condition will live to their mid-40s. The reported median age for type 4 is recorded at 48 years of age. Death will come thanks to arterial dissection and ultimately... rupture.

People with type 4 will never know that they have it until it happens. They can be perfectly fine one moment... and then double over in heart pain during the next moment. And then they are dead.

It is important to state that it is different from a heart attack. Arterial dissections happen when the inside wall of your artery tears. Blood gets in the tear and separates the layers of the artery wall. This dissection creates a weak spot that can lead to a life-threatening leak.

So if this is true for Sir Pentious, he likely died from a tear in his heart.

We will likely be getting Sir Pentious lore in season 2, so I truly hope that my theory isn't disproven.

Why?

Because I have Ehlers Danlos Syndrome too!

[that-disabled-princess]

What is EDS?

Hello! Since it's EDS/HSD awareness month, I figured I'd take some time to talk about the severe disorder that plagues me every waking hour of my life.

Disclaimer: I do not speak for the entire EDS community and my experiences are not universal.

Ehlers-Danlos Syndrome is a connective tissue disorder. It's genetic, incurable, and degenerative. It can cause a lot of problems, including frequent dislocations, POTS (postural orthostatic tachycardia syndrome), heart problems, chronic headaches and migraines, dietary issues, and chronic pain. There are a lot of different subtypes, including hypermobile EDS, vascular EDS, and classical EDS.

It is incredibly painful. I honestly cannot remember the last time I wasn't in pain. It affects everything from my diet, to my mobility, to my hygiene, to my hobbies, to my sleep. I sit down to shower and brush my teeth, I've cut a lot of gluten from my diet, I sleep with several different pillows, I have to accommodate all my hobbies and arts. My mobility aids include forearm crutches, canes, braces, KT tape, and more. Other disability aids include medications, my emotional support water bottle, ice and heat packs, and prescription sunglasses.

I have hypermobile EDS. But the least severe form of a severe disorder is still a severe disorder.

And I am in constant pain.

Everything is a chore, everything is an energy-draining task. Showering takes planning and involves gathering a small army of aids.

Leaving the house takes meticulous planning--which mobility aid will be most helpful today? What braces and supports do I need? Have I eaten enough salt? Will I need my gatorade? Have I refilled my emergency meds lately? Is the place I'm going accessible? And so on.

Engaging in my hobbies takes thoughtful accommodations. I have to be conscious of how my fingers bend when I crochet. I should be aware of how my hands and fingers and wrists are feeling while typing (like typing this post). I have to put all my braces on and bring my stool into the kitchen when I bake. I have to pack my backpack full of disability aids if I want to take a walk. I can't play viola anymore because it isn't safe right now.

I'm so tired. Every day I wake up and I am so so exhausted. Some mornings, while I'm lying in bed and letting my body adjust to being awake, I wonder how the hell I'm going to do this for the rest of my life. Waking up to stiff joints, vertigo spells when I finally crawl out of bed, recovering from an eating disorder while not being able to eat half the food in the house, struggling to leave the house, almost passing out in the shower, going to bed with headaches.

It's hard. It's so fucking hard. I'm not going to sugarcoat this in toxic positivity. Trudging from one day to the next sometimes feels impossible. Some days, it's digging your nails in and refusing to let the depressive thoughts take over. Others, the depression does take over, and there's nothing to do but ride the waves of your grief for a couple days.

Fellow EDS and HSD folks, I wish you all a safe and peaceful month 💖💖

To non-EDS/HSD folks, go learn about EDS and HSD this month!

[nyaagolor]

What's going on with Nemona's wrist?

this is mostly just me putting down all my thoughts about this hc I have. Below the cut bc it's long as usual but read on if ur interested in like. orthopedics

I think Nemona has fatigue and some kind of wrist Issue because 1. She implies she has decreased motor function in that arm (can't throw pokeballs well, supports her arm with her other hand during battles) 2. She wears a brace 3. She gets winded easily / needs to catch her breath more than other characters / hates stairs So that got me wondering what the cause could be. I work in an orthopedic office and my shifts are 12 hours so sometimes when it's slow and I'm bored this is what my mind wanders to

Option 1: It's carpal tunnel and she's out of shape This is the most obvious answer since carpal tunnel is a repetitive stress injury and she's wearing a brace that looks almost identical to irl braces for that problem. Throwing pokeballs over and over, especially incorrectly, would be the most likely cause of an asymmetrical injury like that, and is actually reasonable for someone of her age and activity level. The winded thing is just because she's out of shape and has no underlying cause. Or maybe she just has some kinda chronic pain / fatigue disorder. That's not my department idk

Option 2: Oligoarticular JIA (juvenile idiopathic arthritis) This very long name is just describing chronic joint swelling in children that affects less than 5 joints. It's an autoimmune disease, and actually not that uncommon all things considered. It causes stiffness and pain, which would explain the stamina issues and motor skill issues. Plus, the constant flexion and extension of the knees from staircases certainly would explain her distaste for them in particular. That shit hurts. Occasionally people will use a brace for JIA-- it's highly unlikely her wrist would be the worst considering the typical presentation patterns (it usually affects bigger joints first like the knees) but hey. It's possible! This condition also affects young girls more often than other groups so. Math checks out

Option 3: Ehlers-Danlos Syndrome (hypermobility type) Figured I would include this bc I've seen a few people hc this and wanted to give it a fair shot myself. This is a heritable connective tissue disorder that causes hypermobile joints, chronic pain, fatigue, and a whole host of other things. Specifically tho, this disorder used to be called EDS type III and is now considered part of the Hypermobility Spectrum Disorders, but that's a can of worms for a post that's not this one. While the symptoms do match, and honestly quite well (a brace for stabilization makes perfect sense and the fatigue symptoms feel pretty on the nose) the disease usually causes very stretchy skin and vascular issues that she doesn't seem to have so I'm a tad on the fence

Option 4: Cervical spinal stenosis Despite this being the first thing that came to mind for me (since I see it a lot in the office) I'm now less convinced this would be the case. This disorder is basically a narrowing of the spinal canal that pinches the nerves in the neck. It can cause pain, weakness, numbing, and pain that radiates down the body. If most of the compression was on the C4 and C5 nerve I can see it affecting one arm / wrist especially rough (since the pain is typically bilateral but asymmetrical) but also this occurring in people under the age of 50 is SUPER rare so eh. It's possible it was congenital or caused by an injury but I wouldn't bet on it. As for the stamina issues, the neurological issues caused by the compression would likely be the cause of that, especially radiating down the back and legs. Felt worth it to include even if I'm not 100% convinced

I'm saying "options" here bc these symptoms are super vague and there's like 80 billion things that could cause it, I'm just racking my brain for different possibilities. If anyone has other hcs for the underlying causes of Her Whole Deal lmk I'm curious