#Marfan's syndrome

[catlady5001]

Aortic Dissection Awareness Week 2024

This upcoming week, September 19-26th, is Aortic Dissection Awareness Week. By spreading this infographic, and learning more about the genetic conditions such as Ehlers-Danlos, Marfan's Syndrome, and Loeys-Dietz that increase the risk of having an aortic dissection by 250x, you help to save lives.

If you want to support the Marfan foundation, which makes so much research and medical care possible, consider donating to them, or look into participating in upcoming Walks for Victory - there are both virtual nad in-person sign-ups.

By registering to walk, whether in-person or virtual, you get lunch (in-person), a T-shirt (both), and help fund life-saving research. Registration is $25 per adult, while children register and attend for free! Consider signing up today.

There are upcoming Walks in:

Salt Lake City, UT - September 28th, 2024

St. Louis, MO - September 29, 2024

Houston, TX - March 1, 2025

As well as more to be announced in upcoming months.

As Aortic Dissection Week begins this Thursday, please help spread awareness and help save lives. More information can be found at marfan.org/aorticawareness/

[biology-geology-beaches-india]

The Science Diaries of S. Sunkavally. Page 161.

[dissociacrip]

why yes i have a CTD (crash-to-desktop.)

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

[3liza]

he was an asshole so I never spoke to him again but my high school boyfriend had some sort of very obvious gigantism or Marfan syndrome, dude was 6'10" (208.28cm) and had the typical Marfan features including being nearly blind, short torso, long face etc. he wasn't emaciated but was very thin and immediately identifiable as "guy who had something going on with his growth and development, definitely not normal" even to a casual observer. but I was the person who googled all this and found out whatever his deal was actually had a name, he had been raised to just deal with being blind and hitting his head on stuff and think it was normal. naturally I assumed his parents were also tall and didn't know what was going on.

so at one point we went to his sister's wedding and I met the rest of his family. both parents were about 5'7" and completely normal. his sister was easily 6'2" and had the exact same Marfan symptoms. I was only about 15 so I didn't really have the status or experience to ask anyone what the fuck was going on, but I knew for certain that the BF had no information about why he was seven feet tall and disabled, and his sister didn't say anything, and his parents didn't say anything, I don't think they were adopted, and he wasn't one of those kids who was born at home and raised off the grid or anything so he MUST have seen a pediatrician at some point, gotten shots, went to public school and so on. so what the fuck. did every single adult in this kids life and both parents just see that their 17 year old was Slenderman and think "hm! that's odd! oh well!"

I think about this all the time. they weren't poor either, they were working class and able to take a kid to a doctor about something if they wanted to. I'm not THAT old, but even if I was, 6'10" at any point in the history of the USA would be locally remarkable, and at any point in the last near-century would warrant at least a screening for pituitary tumor. instead he was just annoyed every time someone asked him about basketball. as far as I know he never had any tests or care from a cardiologist or endocrinologist or physical therapist. unfortunately he really is so much of a dickhead I can't even follow up on this but when he drops dead of spontaneous arterial dissection in his 40s are his parents going to say "if only there was something we could have done"???

anyway I spot people's medical problems all the time that have seemingly gone unremarked upon for decades, that's not unusual for me or anyone, but it was the sheer magnitude (literally) of this particular case that has maddened me ever since. if you were a short couple and had two giant children would you not want to get that checked out. I would want answers

[gayaest]

h'lo! I know you made it a while ago, but I wanted to thank you again for the Tsukishima design you did. I don't know the character my self, but it meant so much to me to feel like I was recognized ^^ just cause marfans syndrome is a medical condition that doesn't usually show up in a lot of media. I personally have a form of marfans syndrome, where the connective tissues in my muscles contract and get tighter, compared to getting longer like other people :3 thank you so much again <3

Hello!

I’m so glad my AU and art means so much to people, hearing from other disabled people really brightens up my day and makes me feel so much less alone and like the world is so much bigger.

That’s interesting! I’ll definitely do research on your presentation of marfans too, since I haven’t heard of that before! Thank you for telling me and trusting me with the information 🩷

I have another OC with Marfans too! Her name is Vashti, and she is a kindergarten teacher as well! I hope to be able to give people good forms of both representation to see themselves in — and just fun characters to relate to!

[five-thousand-loaves-of-bread]

helenist 🌙

[plain text: helenist 🌙 moon emoji]

[id: person with long hair n wearing dress holding scythe while light shine from back. there text around person (including diagram of back of dress & forearm crutch) which will be functionally described after image description.

person has long straight navy hair, wearing long sleeve darker navy dress with white collar. in front of chest there gold rib cage decoration. they wearing gold high heel ankle boots. they medium ish color skin but is wear translucent black/brown tights so make leg appear darker. they have long fingers & limbs. they holding scythe, which like shining crescent moon. background is dark like night. end id.]

🌙.

transfem, she/her/they. “they” is mostly there for decoration & for denote Complicated Gender. everyday please use she.

scythe called “¼ moon” (pronounced quarter moon) (for obvious reasons). for now. she has moon powers! for now. scythe glows! that one definitely staying. hopefully.

she has marfan syndrome (ignore extra “s” in image!!!), which is genetic connective tissue disorder! for her this mean she has long fingers & limbs, protruding sternum, heart complications, n loose joints, & some others.

her spine cause her lots problems throughout life, including surgery for spinal fusion, n she wear pretty shiny golden rib cage (front) & spine (back) as decoration inspired by it. her protruding sternum you may be able see on good rib cage (<tried)? n afterwards realize can also make scoliosis visible with gold spine so you live you learn. feel free draw that version even tho not in character sheet (yet!).

for everyday she use one forearm crutch which is golden & spirals up her arm. it transforms into scythe when needed. when in scythe form she use scythe for support.

uhh potential polycule with cumulus/nephos/☁️ & hyacinthos?? <still deciding

artfight character page

reblog welcomed but please no repost

dont steal my art

[id: same image as above just without lighting. so can see base color better. end id]

[moroser]

angela and scarecrow wife.

been in a shippy mood so i have drudged up these stinkies.

[image description: on the left moira bends to look angela in the eyes, she has her hands on her waist. angela is holding a cup of something, has glasses on. on the right, moira looks down, as she puts a bandaid on her head, at angela who looks up at her lovingly, her hands are in moira's back pockets. (risque) ]

[sai-mami]

Not all conditions disable everyone

Not all people with a disability are disabled to the same extent

No one can tell you how you choose to cope with or handle your disability

[offbrandhand]

What if Micheal (distortion) was just like someone with Marfan syndrome like, Sasha would’ve just been judging this poor fool for a collagen dysfunction. Sasha was trying to get Elias to fire her via discrimination

Examples of Marfan syndrome under the cut, one of the pictures can be considered upsetting so take caution if you’re iffy with things adjacent to body horror

[biology-geology-beaches-india]

TSRNOSS, p 558.

[tiredsn0w]

Competitive sports advantage. Immediate disqualification.

7cb7 is their well-meaning able-bodied friend. Then she's just their well-meaning friend. Yay to bonding opportunities?

[schar-aac]

"Marfan syndrome"

IDs in alt text

added to specific disabilities page

[gayaest]

Tsukishima’s Marfan Syndrome doesn’t affect his heart / arteries too drastically or fatally — but he gets regular check-ups just in case! 🏐🧡

[faedastudies]

Just found out an assignment I worked my ass off on last semester never got graded

[flutt3rb4tz]

i hate when people who dont have marfans make/headcanon characters with marfans as some quirky trait. i really do, i've seen it a lot in my life as someone who was diagnosed at 3 with the condition and it honestly grinds my gears they always do the most stereotype-y traits, or ignore how much of a struggle it is to live with marfans, or how marfans can fuck up your body further by just how much shit it causes.

to put it into perspective, i got tagged like a fucking animal at school because they didnt want to take too much care into explaining that i needed extra care if something happened, or that people should be gentle with me because i could die on school grounds. ive sat cooped up in my home most of my life, i've only been on a fair ride once because getting on a roller coaster could harm me as well. i need help walking or getting around because my body cant always handle it, i have other problems due to marfans that have hurt me greatly for my entire life.

i'm slowly going blind from marfans and theres nothing a doctor can do that will stick. i risk aortic dissection simply by being hit in the chest, i used to be afraid of going to bed because if anything hit my chest too hard i could literally fucking die then and there, because my heart would fucking collapse on itself and theres a decent chance that i wouldnt make it to the emergency room.

it's not just some trait, it is a disability. and it's not quirky!! it was never fucking quirky!!! getting discriminated against for being disabled by the age of 4 wasnt fun! it wasnt silly! it was traumatizing!!!!

if you're going to make a character or headcanon a character with marfans take into account how much of a stereotype you're making them. there are short people with marfans, fat people with marfans (like myself), poc with marfans, there are people who cannot walk or function because of marfans, people with marfans arent scary or shy or weak all the time. we're human people! we vary!

talk to actual people with marfans. look up posts about the condition from people with the condition. dont confuse marfans with EDS. just have common sense!! its exhausting trying to look at content from people like me and either seeing headcanons, EDS posts, or people telling everyone with marfans that they have no hope (this ones common on reddit, but it applies).

people with marfans dont immediately die either, btw. i saw a post recently that was just "haha this character better have had amazing doctors or his marfans would kill him in 2 seconds!!!" and that's not how it works. of course it can be fatal thats with all things, but dont act like its an immediate death sentence, please. i'm sure a lot of us have heard it enough already