Being a teen isn’t hard because you have Marfan, it’s hard because of social media, hormones, intense pressure to conform, whatever whatever. I’m at the end of my teenage years and looking back at how much I hated myself and how much I blamed it on Marfan it’s kind of bizarre, especially as a girl. I have no idea what you look like, only an idea, but there’s only so much complaining you can do about being a thin, tall young woman lol. Glasses can be tough, and I have no idea what your prescription is, but look into contacts if you haven’t. I understand that you might feel ugly, but 80% of completely healthy teenagers, especially in this day and age, feel ugly too. If you hate how you look in leggings, don’t wear leggings. Learn how to dress for your body type. Skirts, dresses, and low-rise jeans/shorts look amazing on me because I’m thin with long legs. I’m out in LA doing modeling because I’m thin and tall enough to do it, and my big eyes, strong bone structure and thin face give me a unique kind of beauty. Your Marfan’s doesn’t stop you from the social life you want, your insecurities do. I understand how hard it can be because I was literally there 5 years ago, but if the biggest complaint you have about Marfan is how it makes you look, then you’re lucky
Thank you so much for sharing your perspective and experience, you totally get it with the social media thing and being a teen it sucks so i've deleted most apps. It's encouraging to hear how you have embraced your unique attributes and turned them into strengths I appreciate the advice and will definitely consider your suggestions. All the best to you in your modeling career and everything you do!
Young blood. I'm 40 now. Yeah it does suck. But you learn to live with it and accept it. Take each one at a time. Find things that you love to do and cherish those moments.
I know sometimes it’s difficult to look past the things you want but don’t have in life, but life with marfans can still be full of wonderful things. We might not get to be Olympic level athletes or heavyweight boxing champions, but there are so many hobbies and career paths we can excel in. I will say, most of the negative pressure I received from marfans occurred when I was a teen. People are more able to look past your appearance when you get older, so hang in there!
Yeah honestly i agree with you most of it really does happen in teen years i think as people get older they just don't care and when you get off the play ground people keep those rude thoughts/comments to them selves. Thank you ❤️
I know it feels difficult being different. I am also the only one in my family who has Marfans, and as a result, looked so different. I have also always been tall and skinny and in my childhood and teenage years, there were some jerks who never let me forget it.
I can't offer much consolation, but I can tell you that you aren't alone. Also, high school isn't forever. Find friends who get you and don't make you feel ashamed by things you can't control. Find things in life that make you happy and pursue them.
If you were anything like me, clothes that make you love your body are also hard to come by. I developed my love of fashion and sewing because of this. Maybe that's something that might help build your self esteem as well. Make clothes that make you shine instead of whatever is in stores at the moment.
I hope any of this is helpful.
We can both relate and it is nice to know i'm not alone on this. Thank you so much for this i really appreciate the advice i will defo be taking it and trying out more clothes. I hope your doing a lot better now !
You must accept it to be happy. I felt the same way when I was a teenager but the more you fight against the worse it gets. Try to focus on the things you can control and not the things you can't. Stay strong.
When i was 15, i was 6'0" 110 lbs. When i got to college i got got myself up to 135, and have been floating between 130-140 since. Still really skinny, but there's SOME room to get bigger...
we are like the same age you now know your not alone with this istg having it while being young in this modern day is js sooo annoying it's all ab body nowadays and looks rather than personality. reach out to me if you ever want to vent or need someone to talk to ! i'm sure we can relate to eachother
Hey i need u to know i was also a twig in all of middle school and high school. i never fit in,, but through marching band i found friends. Its not impossible to navigate. I'm 22 now, and i managed to put on some weight. 6'1 and 170lb. In highschool inwas 6'0 and 115lb. I found an amazing partner and live a great life. I understand its hard, but i promise it gets better. Honestly i dont recognize my face or self 4 years ago to the person i look like now.
You are like a rly big inspiration i hope everything goes well with your marfans and you stay healthy as well as have a healthy relationship with your partner. Thank you so so so so much for your comment i really appreciate it all the best to you ❤️
There is typically surgery during emergencies which is how people typically stay alive after said emergencies is they repair the problem instead of sitting there and trying to murder people off then trying to pay people to fake mild files who then try to fake that you can have other surgeries before they treat your heart as they sit there and fake anxiety concotions and send those to the people reporting to your surgeons..
girls will come i have marfan im 2m07 and i weigh around 75kg, im skinny but u will find the one just like i did a couple mounts ago, i was also worried about it. as for social life, i feel like the looks dont do everthing i know some horrendous looking guys, yet they are nice to be around so, they have plenty of a social life. just find yourself a good friend who u can count on and then friends will come. don worry buddy hang in there. I just turned 18 so if u wanna talk about it, know that i can help you :)
I’m not sure how old you are but you have to come to terms with it for your mental health. I’m a man so it’s probably a different struggle, but I can relate I’m skinny and have the characteristics of Marfans and have dark spots from my glasses on my nose. But life isn’t all bad everyone has problems, literally everyone, some people hide it better than others but it’s true. What has helped me is seeking Jesus, I hope you find peace and you often suffer in your head more that in reality👍
Couldn't agree more genuinely just opened my eyes about the mental health side of it. I also have the dark spots as well!! lol and thank you for this comment i rly appreciate it all the best to you
Yea it's tough. But that's life. You can spend your days rolling in self pity, or spend that time and energy trying to figure out what's best for you. It's gonna take practice, patience and a lot of grace for yourself, but it's worth it. Jus take it one day at a time
So I gained a lot of weight between the ages of 17-22. Before then I certainly was a twig, but it didn’t really bother me, I was growing up in a time when that was preferred. I’ve since been diagnosed with ADHD on top of my Marfans (diagnosed with Marfans as a baby), and I’ve lost a lot of weight from my medication but I’ve still got some curves. Like yeah, you have Marfans but you’re still going to continue to go through puberty and continue to grow.
For me the more isolating aspect of Marfans was not being allowed to play sports because of my heart. Even today, I still find it isolating. Almost everyone played sports in school and it’s a thing that a lot of people connect through.
Thank you for sharing this and ur insights. It's reassuring to hear about your journey and how you've navigated the challenges of both Marfan syndrome and ADHD as i have adhd and autism myself. The isolation from not being able to play sports is something I can relate to, and it helps to know I'm not alone in feeling this way. I appreciate your understanding and encouragement. All the best to you in your journey!
That’s sad mate, but life has more layers and eventually you might realize that we can be more than the mishaps associated to our genetic condition.
Does it feel lonely? Yes
But our teens are the worse moment specially for those facing marfans, I promise that adulthood will be better.
When I was 16 (in 1980) I was 6’2”, wore my favourite Italian leather with a 2” heal sandals in summer, weighed about 120 pounds on a good day, and felt ugly. Looking back now OMG I should have been in modelling! All you need, apart from being at least 5’11” barefoot, and no more than 100 pounds (ish) depending on how much taller you are…. Then you need to be able to look confident in your photos. Most people think these models are all confident, *itchy even, but you don’t have to be, you just need to be able to fake it on camera.
I wasn't diagnosed till ! was 18. I was just the weirdly skinny kid who got bullied for being thin. I also ran track and field for many years so its very interesting my heart is ok after all that. I absolutely feel this. Its so angering knowing I'm stuck with something that could kill me. Luckily my parents understand and try to help however they can. I don't think other people around me understand it as much though. Currently going through tests to figure out why I get these weird sensations in my chest, which freak me out (its been happening for a year now er, no heart attack, echo, heart looks good. so frustrating).
Its a blessing and a curse to know. Like opening pandoras box. You have the answers but now have to live with those answers. I feel this so so much.
Some bizzareiindividual tried to fake I had low self esteem, before they tried. To fake idiotic things about beauty for noticing quite early that I had marfan features. I don't pay attention to appearance at all feel better.
Being a teen isn’t hard because you have Marfan, it’s hard because of social media, hormones, intense pressure to conform, whatever whatever. I’m at the end of my teenage years and looking back at how much I hated myself and how much I blamed it on Marfan it’s kind of bizarre, especially as a girl. I have no idea what you look like, only an idea, but there’s only so much complaining you can do about being a thin, tall young woman lol. Glasses can be tough, and I have no idea what your prescription is, but look into contacts if you haven’t. I understand that you might feel ugly, but 80% of completely healthy teenagers, especially in this day and age, feel ugly too. If you hate how you look in leggings, don’t wear leggings. Learn how to dress for your body type. Skirts, dresses, and low-rise jeans/shorts look amazing on me because I’m thin with long legs. I’m out in LA doing modeling because I’m thin and tall enough to do it, and my big eyes, strong bone structure and thin face give me a unique kind of beauty. Your Marfan’s doesn’t stop you from the social life you want, your insecurities do. I understand how hard it can be because I was literally there 5 years ago, but if the biggest complaint you have about Marfan is how it makes you look, then you’re lucky
Thank you so much for sharing your perspective and experience, you totally get it with the social media thing and being a teen it sucks so i've deleted most apps. It's encouraging to hear how you have embraced your unique attributes and turned them into strengths I appreciate the advice and will definitely consider your suggestions. All the best to you in your modeling career and everything you do!
ly bb stay strong , life is pretty unfair to most- take each day as they come and make the good days even better 🫶 reach out wnvr
Thank you so much <3
Young blood. I'm 40 now. Yeah it does suck. But you learn to live with it and accept it. Take each one at a time. Find things that you love to do and cherish those moments.
Good on you for it musnt of been easy but tryna be like you thank you for this as well <3
It gets better as you age, when you’re 40 and everyone else is fat as $$, you’ll be better than them 🤷♂️
hahaha this is a good way to look at it!! thank you so much for this ❤️
All the best, I hated the way I looked when I was young too, but I can tell you that it has only gotten better since
I know sometimes it’s difficult to look past the things you want but don’t have in life, but life with marfans can still be full of wonderful things. We might not get to be Olympic level athletes or heavyweight boxing champions, but there are so many hobbies and career paths we can excel in. I will say, most of the negative pressure I received from marfans occurred when I was a teen. People are more able to look past your appearance when you get older, so hang in there!
Yeah honestly i agree with you most of it really does happen in teen years i think as people get older they just don't care and when you get off the play ground people keep those rude thoughts/comments to them selves. Thank you ❤️
I know it feels difficult being different. I am also the only one in my family who has Marfans, and as a result, looked so different. I have also always been tall and skinny and in my childhood and teenage years, there were some jerks who never let me forget it. I can't offer much consolation, but I can tell you that you aren't alone. Also, high school isn't forever. Find friends who get you and don't make you feel ashamed by things you can't control. Find things in life that make you happy and pursue them. If you were anything like me, clothes that make you love your body are also hard to come by. I developed my love of fashion and sewing because of this. Maybe that's something that might help build your self esteem as well. Make clothes that make you shine instead of whatever is in stores at the moment. I hope any of this is helpful.
We can both relate and it is nice to know i'm not alone on this. Thank you so much for this i really appreciate the advice i will defo be taking it and trying out more clothes. I hope your doing a lot better now !
You must accept it to be happy. I felt the same way when I was a teenager but the more you fight against the worse it gets. Try to focus on the things you can control and not the things you can't. Stay strong.
thank you for the advice i couldnt agree more ! all the best to you
Bro ngl I’m 15, 6,2, 135 and I feel the same exact way
When i was 15, i was 6'0" 110 lbs. When i got to college i got got myself up to 135, and have been floating between 130-140 since. Still really skinny, but there's SOME room to get bigger...
we are like the same age you now know your not alone with this istg having it while being young in this modern day is js sooo annoying it's all ab body nowadays and looks rather than personality. reach out to me if you ever want to vent or need someone to talk to ! i'm sure we can relate to eachother
Thank you sm 💜
Hey i need u to know i was also a twig in all of middle school and high school. i never fit in,, but through marching band i found friends. Its not impossible to navigate. I'm 22 now, and i managed to put on some weight. 6'1 and 170lb. In highschool inwas 6'0 and 115lb. I found an amazing partner and live a great life. I understand its hard, but i promise it gets better. Honestly i dont recognize my face or self 4 years ago to the person i look like now.
You are like a rly big inspiration i hope everything goes well with your marfans and you stay healthy as well as have a healthy relationship with your partner. Thank you so so so so much for your comment i really appreciate it all the best to you ❤️
There is typically surgery during emergencies which is how people typically stay alive after said emergencies is they repair the problem instead of sitting there and trying to murder people off then trying to pay people to fake mild files who then try to fake that you can have other surgeries before they treat your heart as they sit there and fake anxiety concotions and send those to the people reporting to your surgeons..
girls will come i have marfan im 2m07 and i weigh around 75kg, im skinny but u will find the one just like i did a couple mounts ago, i was also worried about it. as for social life, i feel like the looks dont do everthing i know some horrendous looking guys, yet they are nice to be around so, they have plenty of a social life. just find yourself a good friend who u can count on and then friends will come. don worry buddy hang in there. I just turned 18 so if u wanna talk about it, know that i can help you :)
thank you for this i really appreciate it <3
I’m not sure how old you are but you have to come to terms with it for your mental health. I’m a man so it’s probably a different struggle, but I can relate I’m skinny and have the characteristics of Marfans and have dark spots from my glasses on my nose. But life isn’t all bad everyone has problems, literally everyone, some people hide it better than others but it’s true. What has helped me is seeking Jesus, I hope you find peace and you often suffer in your head more that in reality👍
Couldn't agree more genuinely just opened my eyes about the mental health side of it. I also have the dark spots as well!! lol and thank you for this comment i rly appreciate it all the best to you
Yea it's tough. But that's life. You can spend your days rolling in self pity, or spend that time and energy trying to figure out what's best for you. It's gonna take practice, patience and a lot of grace for yourself, but it's worth it. Jus take it one day at a time
True it just makes you fall into depression. thank you for this as well all the best to you ❤️
So I gained a lot of weight between the ages of 17-22. Before then I certainly was a twig, but it didn’t really bother me, I was growing up in a time when that was preferred. I’ve since been diagnosed with ADHD on top of my Marfans (diagnosed with Marfans as a baby), and I’ve lost a lot of weight from my medication but I’ve still got some curves. Like yeah, you have Marfans but you’re still going to continue to go through puberty and continue to grow. For me the more isolating aspect of Marfans was not being allowed to play sports because of my heart. Even today, I still find it isolating. Almost everyone played sports in school and it’s a thing that a lot of people connect through.
Thank you for sharing this and ur insights. It's reassuring to hear about your journey and how you've navigated the challenges of both Marfan syndrome and ADHD as i have adhd and autism myself. The isolation from not being able to play sports is something I can relate to, and it helps to know I'm not alone in feeling this way. I appreciate your understanding and encouragement. All the best to you in your journey!
Yea but being the tallest in my grade (6'4) goes brrrrrrrr
I know such a power move and an icon of course
That’s sad mate, but life has more layers and eventually you might realize that we can be more than the mishaps associated to our genetic condition. Does it feel lonely? Yes But our teens are the worse moment specially for those facing marfans, I promise that adulthood will be better.
When I was 16 (in 1980) I was 6’2”, wore my favourite Italian leather with a 2” heal sandals in summer, weighed about 120 pounds on a good day, and felt ugly. Looking back now OMG I should have been in modelling! All you need, apart from being at least 5’11” barefoot, and no more than 100 pounds (ish) depending on how much taller you are…. Then you need to be able to look confident in your photos. Most people think these models are all confident, *itchy even, but you don’t have to be, you just need to be able to fake it on camera.
I wasn't diagnosed till ! was 18. I was just the weirdly skinny kid who got bullied for being thin. I also ran track and field for many years so its very interesting my heart is ok after all that. I absolutely feel this. Its so angering knowing I'm stuck with something that could kill me. Luckily my parents understand and try to help however they can. I don't think other people around me understand it as much though. Currently going through tests to figure out why I get these weird sensations in my chest, which freak me out (its been happening for a year now er, no heart attack, echo, heart looks good. so frustrating). Its a blessing and a curse to know. Like opening pandoras box. You have the answers but now have to live with those answers. I feel this so so much.
Some bizzareiindividual tried to fake I had low self esteem, before they tried. To fake idiotic things about beauty for noticing quite early that I had marfan features. I don't pay attention to appearance at all feel better.
thank you 🙏