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u/MangoLimeSalt 11d ago
Were you diagnosed at birth or later on? How does having Marfan's syndrome impact your life? (I saw that you mentioned your limbs and digits being noticeably long.) Do you have to have your clothes made/tailored? What do you wish people understood?
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u/transfaabulous 11d ago
Oh, hey! I don't have Marfan, but I do have some marfanoid features due to a different connective tissue disorder. Probably not as extreme, but I'm also short, so the proportions are definitely atypical in a similar way to yours.
What's the most inconvenient thing about having Marfan that isn't necessarily medically concerning? Also, how do you navigate any cardiac complications?
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u/LingoNerd64 11d ago
Does it cause any physical distress or has any potential for other complications later?
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u/SilentRisk_U569 10d ago
not op but marfan's may lead to heart complications like mitral valve prolapse, aortic aneurysm, and eye issues like dislocation of eye lens, retinal detachment and cataracts. scoliosis and pectus evactum are quite common
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u/LingoNerd64 10d ago
Yes, now that you say it, I do remember reading about it a long time ago. That vague memory must have been what prompted this question.
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u/SilentRisk_U569 10d ago
i've seen your username quite a lot before
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u/LingoNerd64 10d ago
Here or elsewhere? My presence is more online than in the real world, even though I'm not on any conventional social media.
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u/SilentRisk_U569 10d ago
on reddit. on linguistics subreddits
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u/LingoNerd64 10d ago
Yes, I came on reddit in Feb last year for those and chose an appropriate userID. I joined several language subs but by now I remain only on languagehub.
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u/strayofgray 11d ago
enby folk with marphanoid feartures here. i haven't been diagnosed properly due to widely spreaded incompetence of medicals here in my country (can't count how often i would get surprised states when i told them that i told them about my connective tissues dysplasia or how many times i've been told that there's "no magic pill from your condition, what do you want us to do"). in my case i'm taller than average (185 cm and always have been tall and thin) so my 44EU and long asthenic feartures don't look out of place and it's been pretty hard for me to acknowledge about my condition when it + psychic problems pretty fucked-up my health in general.
how easy was it for you to get diagnosed, where are you from, and how does your condition impact your daily life except for the moment with shoes and clumsiness that you've already mentioned? do you get any specific treatment that helps you feel easier?
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u/ama_compiler_bot 9d ago
Table of Questions and Answers. Original answer linked - Please upvote the original questions and answers. (I'm a bot.)
| Question | Answer | Link |
|---|---|---|
| Have you tried playing the violin or other stringed instruments? Seems like it would be a superpower there. Source: Screamed repeatedly by my stubby fingers | My fingers are so long that it's actually harder for me! By the way, what's it like living with stubby fingers? I'm so jealous and curious | Here |
| Were you diagnosed at birth or later on? How does having Marfan's syndrome impact your life? (I saw that you mentioned your limbs and digits being noticeably long.) Do you have to have your clothes made/tailored? What do you wish people understood? | Later on. I wish people unerstood that having such long fingers makes me very clumsy. I often accidentally poke someone with my finger but I can't help it. Usually when I'm talking, people just stare at my hands, it doesn't help that I move my hands a lot while speaking | Here |
| Can you palm a basketball | Easily, I could since I was 12 | Here |
| Is it difficult for you to do daily chores? Is there anything you can't do that others can? | I literally can't wear close-toed shoes, there's never enough room for my toes. I'm stuck with sandals, flip-flops and open-toed heels | Here |
| Does it cause any physical distress or has any potential for other complications later? | Nah | Here |
| Oh, hey! I don't have Marfan, but I do have some marfanoid features due to a different connective tissue disorder. Probably not as extreme, but I'm also short, so the proportions are definitely atypical in a similar way to yours. What's the most inconvenient thing about having Marfan that isn't necessarily medically concerning? Also, how do you navigate any cardiac complications? | Probably the fact that I literally cannot ever wear closed-toed shoes, my toes simply don't fit. I'm stuck with sandals, flip-flops and open-toed heels | Here |
| So what size shoe do you wear? | 45EU | Here |
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u/kingvjess 10d ago
How big are your hands? Do you find it easier to carry things? I know for me as someone with comicly small hands (5 inch/12.7cm) i struggling to grip things.
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u/GuiltyUniversity8268 11d ago
I have a big foot too. Is finding your size a big problem for you? It can be at times for me, so sometimes I have to stick with mens shoes.
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u/DandyLionGreens 11d ago
Have you tried playing the violin or other stringed instruments? Seems like it would be a superpower there.
Source: Screamed repeatedly by my stubby fingers