#marfan syndrome | Explore Tumblr Posts and Blogs

smoov-criminal · 10 months

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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]

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gayaest · 1 year

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

#my art #art #fanart #haikyu #tsukishima kei #kei tsukishima #haikyuu #paravolley #paravolley au #sitting volleyball #disabled artist #disability art #marfan syndrome #cane user #alt text added

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sai-mami · 4 months

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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

#disability #disabled #blind #deaf #dwafism #eds #marfan syndrome #fibromyalgia #amputee #paralisis #hdhd #depression #neuropathy #mobility aid #bipolar #AIDS #arthritis

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magicsamart · 10 months

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All the back braces I wore from ages 3-13

Severe Marfan Syndrome caused my spine to collapse into an S curve that started to twist my rib-cage despite constant bracing. I had a full spinal fusion with two titanium rods, 7 2-inch bone screws securing each rod (14 screws total). Spinal fusion was the most painful experience in my life and worth it for my result. 12 years with no revisions, my family and doctors gave me a new life. My shoulders are even, my scar is barely visible, I can climb stairs and run. Only doctors and other people with scoliosis can tell what I had done. I still go to therapy for ptsd, it’s normal to not heal perfectly :D

#I'M FREEEE!!!#magicsamart #digital art #back brace #marfan syndrome #prop design

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flutt3rb4tz · 4 months

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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

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schar-aac · 24 days

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"Marfan syndrome"

IDs in alt text

added to specific disabilities page

#marfan syndrome #steinberg sign #thumb sign #communication symbol #communication image #aac symbol #aac image #aac emoji #custom emoji #disability

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alice-dyers-spouse · 1 month

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Hey, so I am trying to create a character with marfan syndrome because i am trying to branch out with the kind of characters i draw (usually they just turn into gay twinks q-q) but I am not getting any good information on how to accurately make a character with this syndrome. Like, i don't wanna be That Guy and completely stereyotype this so if anyone sees this who has marfan's syndrome/is very close with someone who dies can i hear some thoughts? thank you!!!!!

#disability #marfan syndrome

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spacemancharisma · 8 months

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from one hypermobile person to another: what's your favourite brace/mobility aid? (feel free to ignore if this is weird)

not a weird ask at all!! so I have two-

the first are these knuckle braces I got from zebrasplints.com (not a sponsor I just love their product) that were super cheap but good quality stainless steel splints that brace hypermobile knuckles and also are adjustable and very nonassuming/pretty cool looking in my opinion. my knuckles lock up the wrong way if they’re in the same position for too long, and as an illustrator that can be a problem lol. the braces are very helpful in this regard.

and the second is ofc my wheelchair- it was super cheap and is probably around 10lbs too low of a weight limit for me, but it’s collapsible for travel and wide enough for my strong and powerful hips and it’s a good friend to me. I don’t have quite the upper body muscle I need to wheel around with it for long stretches of time, but that’s just one more motivation for me to get strong like I want, and also, I never go out with the chair without my husband (I’m scared of rolling down hills). anyway tho- I have limited mobility because of chronic pain that developed as a result of having marfan, not specifically marfan itself, but it’s all the same at the end of the day and the wheelchair lets me leave the house for more than a couple hours at a time, and I love her.

#ask #pain tag #marfan syndrome

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bpod-bpod · 3 months

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Lethal Build-up

Accumulation of a protein called versican underlies the usually lethal aortic disease that's associated with the genetic disorder Marfan syndrome

Read the published research article here

Image from work by María Jesús Ruiz-Rodríguez and colleagues

Centro de Investigación Biomédica en Red de Enfermedades Cardiovasculares (CIBERCV); Gene Regulation in Cardiovascular Remodeling and Inflammation Group, Centro Nacional de Investigaciones Cardiovasculares (CNIC), Madrid, Spain

Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)

Published in EMBO Molecular Medicine, January 2024

You can also follow BPoD on Instagram, Twitter and Facebook

#science #biomedicine #immunofluorescence #aortic dissection #aortic aneurysm #aorta #marfan syndrome

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coffee-bat · 10 months

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btw to my chronic pain homies, do y'all know if there's any meds doctors can give you for chronic joint pain or am i just stuck like this until gene therapy becomes affordable

#im in constant pain and all my joints + neck hurt and itch (like restless legs syndrome) 24/7 and im starting to go insane #everything hurts and itches and i cant sit still and its only worsening with every year #and idk if its worth wasting money on an orthopedist visit bc if they just tell me 'there's no meds for this' then what's the point #ramble #personal #chronic pain #marfan syndrome #connective tissue disorder #sorry for healthposting im going insane everything fucking hurts

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sheliesshattered · 1 year

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#poll #polls #please reblog!#dislocations #spoonie #Ehlers Danlos Syndrome #Ehlers Danlos #Hypermobility Syndrome #Marfan Syndrome #EDS zebra #my first ever poll and it's just me wandering how many other people are dealing with dislocations on the regular lol

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kirblovestopoyo · 26 days

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Late night rambles but seeing people headcannon characters or create characters that have Marfan Syndrome (a rare connective tissue disorder) makes me so happy because there's literally no . Anything about it ever . And so seeing someone talk about or draw or write a character that has it makes me feel so much better and makes me so happy

#marfan syndrome #i just think its neat that other people know the thing i have exists

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thexspiral · 2 months

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Bro said "You aren't disabled and your arm looks fine" and then this is my arm.

#scott rambles #disability #hypermobile #hsd #hypermobility spectrum disorder #eds #ehlers danlos syndrome #heds #marfan syndrome #marfans

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k1mch1-pancake · 10 months

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So. i just got back from watching ATSV and am currently having many thoughts. the first one being that the spot 1000% has marfan syndrome

#serotonin is stored in the chronic illness hc's #but for real #the second that dude showed up on screen i went yeah #pointing like that one DiCaprio meme #marfan syndrome #chronically ill #headcanon #the spot #spiderman #spiderman atsv #across the spider verse #atsv #atsv spoilers

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raebowenwrites · 1 year

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Marfan Awareness Month

February is Marfan Awareness Month! Marfan syndrome is a connective tissue disorder that is close to my heart (pun intended) 😏. In fact it was an old Marfan awareness bracelet that inspired an important quote that shows up multiple times in my novel "The Silver Hunt". It's just one of countless ways that living with this syndrome has inspired my writing.

You know what you should do? Have heart! Learn more about Marfan syndrome and how you can help by visiting this website: https://marfan.org

#marfan syndrome #marfan #words #awareness

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derpkind · 9 months

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Been having a lot of Dysmorphia the last several years especially. Keep thinking about my mom and families comments about "needing to put some meat on your bones", it always felt so futile because no matter how much I ate and tried , I always looked thin gangly, my limbs and height always set me apart, my ribs would poke out and family and kids at school couldn't not point out how I looked. This year I find out about Marfan syndrome; That people with it have a more stretched out structure; often have overgrowth in ribs and dips in their sternum, and have a hard time putting on weight no matter their efforts. Heart conditions are common too.

I fainted a lot growing up, there were times where mother was worried I had a heart condition but the most that happened was blood pressure and heart rate readings... I still getting close to my 30s deal with presyncope, heart palpitations, tachycardia, blood pressure swings.

It's my hope to see a Cardiologist soon and make sure things are ok there, I haven't recieved a diagnosis for marfan syndrome yet, but would like to try to at least get it checked out by more than my PT who thought connective tissue disorder was at least probable.

Being chronically ill, having a myriad of health issues that have traces back into my childhood makes me so angry- If they felt I looked wrong they should have made sure nothing was wrong. My dad was a doctor and should have made sure I was okay but barely took the time to be around and available.

I am who I am, I have a stretched out physique and health issues, even if I dont have Marfan, I shouldn't have been ridiculed because of my body. No one should.

#tw: weight #tw dysmorphia #body dysmorphia #health #marfan syndrome #derpkind speaks #tw vent #vent post #chronically ill

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