#EDS type IV

[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."

[orphiclovers]

yoo mia side story is insane actually because wdym the first real bit of dialogue we get besides Yoo Joonghyuk talking to his baby sister is his manager telling him he has ana face. not even a HELLO FIRST???? totally uncalled for😭

[wayfinderships]

You make Panchi cry? Make Panchi sob of happiness??? Oh! Oh? Jail (My eternal love and happiness) for One Thousand Years!!!

[arsenicflame]

hey does anyone wanna bounce bellhands/they all went to pirate school together ideas with me? im trying to figure out the missing pieces of my personal set up and it might be easier with someone else!

[jinxed-sinner]

New projection headcanon because why not

Alastor and Lucifer both have joint problems, especially in their legs. Alastor’s come from how long it took him to get used to having deer legs and hooves, while Lucifer’s are a permanent injury from his fall made worse by having to get used to his demon form. It's easy for both of them to dislocate something (in fact Lucifer’s kneecaps occasionally slip out of place) because Alastor’s struggles to get used to his demon form and Lucifer’s fall caused their connective tissue to deteriorate.

[bitegore]

can you leave me the fuck alone tumblr

[pletoric0]

page practice

[healingheartdogs]

Love it when a doctor is like "I'm ordering a LOT of blood work for you today, sorry" like no don't be sorry, thank you for turning over every stone you can looking for answers for me

[yardsards]

thinking about the fact that i was so socially awkward as a teen that the school wanted to me out of class to attend "social skills classes" once a week (to which i attended one and demanded i be removed from the program cuz it was just me and about a dozen equally uncomfortable probably-autistic kids who also probably did not want to be there, being forced to do icebreaker activities by deeply condescending special education teachers)

how did i not receive an autism diagnosis til i was nearly an adult and specifically advocated for myself to be taken to a professional to get checked out for autism and adhd???

[neurodiversebones]

HELLO GANG HAPPY 2024 welcome back to the latest installment in soleil's "sorry i haven't been active i promise i didn't die" posts

been busy with school / extracurriculars / scholarship applications which is crazy . going to uni next year is horrifying lol .

mostly been busy trying to not Die however . actually got serious abt anorexia recovery after a very scary health event related to my ed (shocker . kills-your-body disease will start killing your body) so . that's a Thing !! also got medicated for my depression and anxiety which genuinely saved my life which is nice

OH AND IM TURNING 19 ON MONDAY . FUCKED UP AND CRAZY . can you believe i started this blog when i was sixteen thats so fun

i miss being super active on this blog i miss u guys so much . if anyone wants to send me asks abt bones stuff i am happy to answer hehe i need to do smth ive been rotting in bed all day

[computerpeople]

i think with the discussion of autism people forget that a lack of social skills also makes you look like a fucking loser sometimes and its still ableist and embarrassing to be made fun of for it. and that its still intrinsically tied to your symptoms. and also it presents as annoying as shit. and also is still a symptom. you know what i mean?

[sad--tree]

also currently trying 2 talk my mum in2 doing a trip in august to see family out west who i havent seen since i was single digits in age and like. i genuinely for realsies want 2 see those aunts n uncles but also...... i kinda really just wanna see metallica live. this is just a 2 birds 1 stone type of situation. srry 2 my aunts n uncles. yall r at least 55% an excuse 2 go out there in the first place.

[kn11ves]

im sick to death of hearing teachers complaining about their students on social media. first if all i dont think you should at all be complaining if theres even a CHANCE that it can be traced back to you if you are complaining about your students, children are extremely fragile and if they hear what you say that could haunt them for the rest of their lives. and now we have fuckjng podcasts and video shorts of teachers telling fucking stories of their bad experiences with *kids* when they were teaching. I HOPE YOU NEVER WORK IN CHILD CARE AGAIN ARE YOU KIDDING ME????? its INSANE. and i just seent this bitch ACTUALLY FILM INSIDE OF HER CLASSROOM AND COMPLAIN ABOUT HER STUDENTS. ARE YOU INSANE. I HOPE YOU GET FIRED.

[villageoracle]

iced coffee and bong and three tylenol and two ibuprofen i love you

[jonny-b-meowborn]

Okay I use the for you page sometimes and usually it's good, just showing me shit from mutuals/mutuals in law/generally shit from fandoms I like. Like normal. But sometimes the algorithm completely shits itself and now it started randomly showing me some Polish eating disorder community????? Like people sharing how much weight they lost and how they want to be skinny and all that. Literally anorexia posting. What did I do to deserve that shit

[f0lklobito]