5 ft 11 and I'm 12 Nd a girl just a message to those with marfan syndrome like me marfan syndrome isn't going to stop you from living ur life u have to be careful though and always ask a doctor for advice for problems no matter ur height always stay strong
loving life Don't forget,I used to have a family member with Marfan syndrome,He was a male,And his height was 6'4 at the age of 12,It looks like he has his pretty bad
Ive been reasearching marfans because, I was curious and I seem to have alot of the symptoms I am 5ft 10 and a half and 12 and also a girl I have back pain chest pain shoulder pain pretty much all the symptoms except the vision and heart I dont think Idk about the heart though because it has never been checked so im going to the doctors today or in these few days to see whats up😅😣 im nervous
I was only 7 when I was diagnosed with marfan syndrome and it affects my eyes and spine( I have severe scoliosis). My family cant afford the expenses if I undergo a surgery. The pain in my back is killing me and I'm experiencing discrimination. I used to attemp suicide bcoz of that but I'm still hoping that someday I'll find a man who will love me despite of my situation.
Jesus can healed you , believe in Jessu, the bible on Isaiah 53 says that Jesus took all our diseases on the cross, believe that he can heal you, give your life to Jesus, he loves u.
there are 12 symptoms of marfans..... to know for sure you must get a lab to check your genes. do not assume until you have the genetic results back . an echocardiogram is very helpful to see measurement of aorta and mitral but even then, only go to heart docs that specialize, the average cardiologist will pretend he knows what he is talking about. if your aorta is under 5 cm do not worry and no straining. gentle exercise only ! do not push yourself , God bless you, he can lead you. eat 2 whole fruits per day. no caffeine period.
Genetic test will show who has MFS and not a random doctor!Some may have pure Marfan type 1 or 2 and some may have Marfan like syndromes that include mutations in the fibrilline such as Elhres Danlos,Loyes Dietz , Familial thoracic aneurism and dissection syndrome,Mass etc.
I hate having Marfan's, the chest pains are always a burden and my spine limits motion. I do not have all of the problems that come with it. For example, I'm able to play basketball and football with no problem but sitting out sometimes
Yah, that's seems to be my problem, I have not been diagnosed with it yet, but I am seeing a genetics specialist for official results later this year. And of course I have the chest deformity! Ridiculously tall and skinny. 23 years old. I notice that all the articles and videos i watch read and see don't mention chest pain vary often. I think the Aorta problem is a diversion from the chest pain specific issue. Of course its going to hurt when it ruptures! What it looks like they always leave out is: it always hurts... not just when the aorta ruptures.
Hi everyone i have marfan also , i am 51 yrs old and i take beta blockers etc to help, but my biggest helper is the Lord Jesus he gives me the strength to go on when times are tough and they do get that way so please do not get down you all just need to find out what works for the best and go with that. If you need to find a cardiologist asap also so he/ she can put you on a beta blocker soon do not wait, the more you wait the worse it maybe for you. Jesus loves you and he wants to save you and help you.
My husband just diagnosed with pneumothorax and now he just get wsd on his chest, I googled and maybe he has this syndrome, thankyou for your comment, it gives me strength :(((
@@kchilz32 thank god, he is fine now, he has not smoked since the incident until now, and there are no more symptoms, 6 months ago he had a lung x-ray, the doctor said it was good and clean
Ok so I'm 5'11.5 with a 6'4.5 wingspan I've got scoliosis and my hands are 11.5 percent of my overall height. I had to have braces because of crowded teeth. My wrist joints are flexible I can touch my thumb to my forearm. I wear glasses because I'm nearsighted. Heres the concerning thing I was told 2 years ago that I've got heart murmurs which I never got looked at. What's the chances I don't have marfan syndrome?
My online friend had this syndrome and he was the one who showed me what this was. He unfortunately left this world by suicide on 9.27.21 Rest in peace Kevin miss u bro
Please if you are suicidal please call your friends or family or anybody to be with you because i promise as much as it feels like you are alone you are not. People love and care about you.
@@rokotrstenjak1895 I don’t know if it’s appropriate to say… he confided in me and I was his only friend. He had issues with his gender identity and took his life in his backyard.
I have it too, and you shouldn't worry. Yes its scary at first but its good to research it and find out more about it. The great thing is that Marfan doesnt change your life span naturally, so you could still live a long life. Trust me its very scary in the beginning, but just know there are so many people on the same boat as you, and im one of them. I know this comment is late but i hope you read it and know that your not alone. Take care 👌✌️
Crap, my son might have this. Took him to a sports physical this afternoon and the doctor was very worried that he had it. Sent to get an xray of his back and his spine is crooked. He also gets winded really easily when he plays soccer and his balance is off sometimes. Oh man. Praying he's OK.
Not necessarily. People with MFS are usually taller than they would have been without MFS, but there are large variations, just like for others. Also, people with MFS tends to have a shortened torso (which the video gets exactly wrong). That means the overall height is shorter than it otherwise would have been, often making the height "normal". Kyphosis can also bring the height down. The arms and legs are almost always long compared to the body, though. A telltale sign is that the armspan is almost always larger than the height. Another is being able to scratch the side of your knee without bending. But as said, there are variations from the mean.
Woah, I kind of look like the picture at 2:08. I have that caved in thing in my chest (which I've been told is just genetic), my arms are different lengths, shoulders and knees different heights, long fingers, thin arms/wrists, and scoliosis. I'm not saying I have this disease, but I resemble the picture quite a bit (other than I'm a girl and that seems to be male)...
Get it checked out by experts. There are some Marfan Syndrome like conditions (like MASS syndrome) which are more benign, and some (like Ehlers-Danlos Syndrome) which have even higher mortality rates. Armchair diagnosis is not recommended.
My mom has it, her mom, aunts and uncles and her brother passed two years ago because his aorta exploded.. I just had an echo done today to see if I have it. I’m only 5’ 2” and my moms only an inch taller than me.
@@Lucas-wv3oq well, it won't explode if you catch it early and get it repaired with elective surgery. But echo is not the only test, many people have dilated aorta without marfan
@@radosawbadurek3219 like I want to fall in love with a girl, marry her , make some babies watch them grow etc. But who takes the risk on us ? I haven't seen the power of love towards me . Everyone call me weirdo or something else and rejects me . No one wants to hang out with me either .
Same... I just broke up with my gf she dont know why..its hurts her so much :(... i hope she got a good life...I hate my life no hope just live alone... waiting to die
Marc Sabaulan who the gell liked this message and ur not dying trust me I've had it since I was little and my life's perfectly normal with some hospital checkups every few months
When i was born the doctor told my mom i had a Ben spin and when i was around three years old thats when my mom found out i was blind and now i have pain in my heart aometimes and i have a leak in my heart and have marfan syndrome 💔
I mean, I have bad circulation, low fat percentage, bad vision, flexible joints, but othing in the chest, back or hands/feet like that. I'm just an ectomorph yo.
I went for a checkup today cause I had a cold then the doctor asked about my glasses and the crater in my chest and my height and hands. Looks like I have this 😂
That's uncommon. It's an autosomal dominant disorder on non-sex genes, which means that there's normally a 50% risk of inheriting it from an affected parent. If both parents have it, there's still a 50% risk of being affected, plus a 25% risk of getting both gene copies, in which case survival until adulthood is unlikely.
he can live a long happy life.. I've been reading a lot about it.. when someone we love has a disease we shouldn't read "symptoms" only it makes us scared.. we need to read how to live with that disease and how to support our beloved..
Why? It's a genetic mutation, but it generally doesn't kill until after the age of reproduction, so it's not selected against by evolution. It might even be selected FOR by sexual selection, in that women prefer taller men.
+Lucas Gomes i already went to doctor ..in bones and eyes and stomic ...but no one give me any advise ..marfan in egypt here not found..finally i have problems in my heart i will going to doctor
People, if you are not diagnosed, you do not have MARFAN SYNDROME. If you have symptoms get checked out ASAP, do not diagnose yourself
it is extremely hard to get a diagnosis.
Medical Gaslighting is a real thing
whre can u get checked out form marfan sy in serbia
@@shdhdhf google MarfAn tests there are many signs
Meh....... I'll be fine.
RadioactiveRamenPonies lol.....
5 ft 11 and I'm 12 Nd a girl just a message to those with marfan syndrome like me marfan syndrome isn't going to stop you from living ur life u have to be careful though and always ask a doctor for advice for problems no matter ur height always stay strong
loving life
Don't forget,I used to have a family member with Marfan syndrome,He was a male,And his height was 6'4 at the age of 12,It looks like he has his pretty bad
Ive been reasearching marfans because, I was curious and I seem to have alot of the symptoms I am 5ft 10 and a half and 12 and also a girl I have back pain chest pain shoulder pain pretty much all the symptoms except the vision and heart I dont think Idk about the heart though because it has never been checked so im going to the doctors today or in these few days to see whats up😅😣 im nervous
I was only 7 when I was diagnosed with marfan syndrome and it affects my eyes and spine( I have severe scoliosis). My family cant afford the expenses if I undergo a surgery. The pain in my back is killing me and I'm experiencing discrimination. I used to attemp suicide bcoz of that but I'm still hoping that someday I'll find a man who will love me despite of my situation.
Reality hits me, no one will love a human like me. I will be a pain in their butt.
Same I dont tell to my family that I have this disease....cause their hopes in me..im going to job with my backpain....
Jesus can healed you , believe in Jessu, the bible on Isaiah 53 says that Jesus took all our diseases on the cross, believe that he can heal you, give your life to Jesus, he loves u.
@@beatrizmelendez4709 its genetic disease no one ca help us
@@jovierosemilca2236 your Instagram???
My brother, mum and I have it. My nana died from it before I was born. It affects my body and heart.
Sorry for your loss man. Feel bad for you...
How does it affect your body
Makes you skinny and makes your limbs long. Watch the video.
@@PhantomTransmission no dumbass I asked him , he said it affects his body , since it affects everyone in many different ways I’m asking what are his
Jesus fucking christ calm down bro
there are 12 symptoms of marfans..... to know for sure you must get a lab to check your genes. do not assume until you have the genetic results back . an echocardiogram is very helpful to see measurement of aorta and mitral but even then, only go to heart docs that specialize, the average cardiologist will pretend he knows what he is talking about. if your aorta is under 5 cm do not worry and no straining. gentle exercise only ! do not push yourself , God bless you, he can lead you. eat 2 whole fruits per day. no caffeine period.
I’m a guy and it’s difficult not to strain
The information was well presented but I hate being spoken to with a robotic voice that has numerous mispronunciations.
Genetic test will show who has MFS and not a random doctor!Some may have pure Marfan type 1 or 2 and some may have Marfan like syndromes that include mutations in the fibrilline such as Elhres Danlos,Loyes Dietz , Familial thoracic aneurism and dissection syndrome,Mass etc.
I already have this syndrome. I am 19 years old. I hate this extreme thinness and these symptoms. A miserable life
مرحبا اخي كيف عرفت انك مصاب انا لدي جميع علامات لكن لا اعرف ان كانت عندي ام لا
وانا ايضا ...كم طولك اعاني منه بشكل مفرط
John Ritter had undiagnosed Marfan's; he died from an aortic dissection
I hate having Marfan's, the chest pains are always a burden and my spine limits motion. I do not have all of the problems that come with it. For example, I'm able to play basketball and football with no problem but sitting out sometimes
Yah, that's seems to be my problem, I have not been diagnosed with it yet, but I am seeing a genetics specialist for official results later this year. And of course I have the chest deformity! Ridiculously tall and skinny. 23 years old. I notice that all the articles and videos i watch read and see don't mention chest pain vary often. I think the Aorta problem is a diversion from the chest pain specific issue. Of course its going to hurt when it ruptures! What it looks like they always leave out is: it always hurts... not just when the aorta ruptures.
@@curtiseisenbeis2484 I feel like most people are misinformed about marfan’s and not a-lot of people know they have it.
Hi everyone i have marfan also , i am 51 yrs old and i take beta blockers etc to help, but my biggest helper is the Lord Jesus he gives me the strength to go on when times are tough and they do get that way so please do not get down you all just need to find out what works for the best and go with that. If you need to find a cardiologist asap also so he/ she can put you on a beta blocker soon do not wait, the more you wait the worse it maybe for you. Jesus loves you and he wants to save you and help you.
My husband just diagnosed with pneumothorax and now he just get wsd on his chest, I googled and maybe he has this syndrome, thankyou for your comment, it gives me strength :(((
I write this comment while in the hospital, take care of my husband, hope he Will be better and live longer :((
@@lilcaramel0 you welcome
@@lilcaramel0 how’s your husband doing?
@@kchilz32 thank god, he is fine now, he has not smoked since the incident until now, and there are no more symptoms, 6 months ago he had a lung x-ray, the doctor said it was good and clean
Ok so I'm 5'11.5 with a 6'4.5 wingspan I've got scoliosis and my hands are 11.5 percent of my overall height. I had to have braces because of crowded teeth. My wrist joints are flexible I can touch my thumb to my forearm. I wear glasses because I'm nearsighted. Heres the concerning thing I was told 2 years ago that I've got heart murmurs which I never got looked at. What's the chances I don't have marfan syndrome?
See a doctor, there's a genetic test that's very revealing, but most importantly, get an eco of the heart to check your aorta in the 1st place!
My online friend had this syndrome and he was the one who showed me what this was. He unfortunately left this world by suicide on 9.27.21 Rest in peace Kevin miss u bro
Please if you are suicidal please call your friends or family or anybody to be with you because i promise as much as it feels like you are alone you are not. People love and care about you.
@@krystalriley10 why was he suicidal. Sorry for your loss
@@rokotrstenjak1895 I don’t know if it’s appropriate to say… he confided in me and I was his only friend. He had issues with his gender identity and took his life in his backyard.
That was the year of redemption for me sorry for your loss
I have marfan sydndrome.
(why did i look this upp im scared)
pastel candy is how you feel
I have it too, and you shouldn't worry. Yes its scary at first but its good to research it and find out more about it. The great thing is that Marfan doesnt change your life span naturally, so you could still live a long life. Trust me its very scary in the beginning, but just know there are so many people on the same boat as you, and im one of them. I know this comment is late but i hope you read it and know that your not alone. Take care 👌✌️
pastel candy me to I have Marfan syndrome I can't watch this anymore 😭
I feel bad for you. Don't be scared only if you get diagnosed with a horrible case I hope you will be ok.
@@Jc-587 aww love you and your comment, I'm not afraid anymore
Crap, my son might have this. Took him to a sports physical this afternoon and the doctor was very worried that he had it. Sent to get an xray of his back and his spine is crooked. He also gets winded really easily when he plays soccer and his balance is off sometimes. Oh man. Praying he's OK.
so people with this are really tall??
Alessa Dolan yes, im 17 y.o / 170cm, my sisters 21 y.o / 190cm.
Not necessarily. People with MFS are usually taller than they would have been without MFS, but there are large variations, just like for others. Also, people with MFS tends to have a shortened torso (which the video gets exactly wrong). That means the overall height is shorter than it otherwise would have been, often making the height "normal". Kyphosis can also bring the height down. The arms and legs are almost always long compared to the body, though. A telltale sign is that the armspan is almost always larger than the height. Another is being able to scratch the side of your knee without bending. But as said, there are variations from the mean.
Taller than anyone in their family,like me 😂😂😂
My brothers only 17 and 6,7 ft and I’m only 15 and 5,11. My brother and I both have it
Is shoulder subluxation part of Marfan
my son was just was told he had this and he been having bad speech problems. .. now ik u can have speech delays
I think I might have this. Because I am so tall compared to the rest of my family and have cold limbs. Should I be afraid?
Celeste Eckhard ask your doctor
Bro I also have
My son might have it..I'm so scared after this..
Hey! No need to be scared.....you can visit a good doctor and get the test done for marfan syndrome .
@@vandita4006I did, He didn't have it but I still think he does..just too skinny..
thank god i dont have the heart problem yet. i do have marfans sydrome
When you think you have lumbago, and trouble breathing... Call an ambulance. I made it...
Woah, I kind of look like the picture at 2:08. I have that caved in thing in my chest (which I've been told is just genetic), my arms are different lengths, shoulders and knees different heights, long fingers, thin arms/wrists, and scoliosis. I'm not saying I have this disease, but I resemble the picture quite a bit (other than I'm a girl and that seems to be male)...
Well, Marfan is also just genetic.
Damn I have marfan im really fucked up
I think I might have this
Get it checked out by experts. There are some Marfan Syndrome like conditions (like MASS syndrome) which are more benign, and some (like Ehlers-Danlos Syndrome) which have even higher mortality rates. Armchair diagnosis is not recommended.
The Titan what symptoms do you have?
Oh my fucking god. Im fucked. I literally ahve every single thing.
))
Me too, except eye problems and joint pain.
Lincoln had this
whre can u get checked out form marfan sy in serbia
Pa je l si trazio na guglu
My mom has it, her mom, aunts and uncles and her brother passed two years ago because his aorta exploded.. I just had an echo done today to see if I have it. I’m only 5’ 2” and my moms only an inch taller than me.
His aorta exploded???
Oh cool, I'm going to die in a horrible way 🤦
@@Lucas-wv3oq sadly yes it did
@@Lucas-wv3oq well, it won't explode if you catch it early and get it repaired with elective surgery. But echo is not the only test, many people have dilated aorta without marfan
Did you end up finding out?
@@billiswilling mines is minimally dilated at 3.9cm and last year was at 3.7cm
So I'll be single forever 😂😂😂
Yankee TM why do u think so?
@@radosawbadurek3219 who wants to take a risk like this , loving me
sometimes love is much stronger than the common sense telling us that something is risky and that the disease may affect our children
@@radosawbadurek3219 like I want to fall in love with a girl, marry her , make some babies watch them grow etc. But who takes the risk on us ? I haven't seen the power of love towards me . Everyone call me weirdo or something else and rejects me . No one wants to hang out with me either .
Same... I just broke up with my gf she dont know why..its hurts her so much :(... i hope she got a good life...I hate my life no hope just live alone... waiting to die
I'm going to cry
Well today
im dying
No!You are not!
Marc Sabaulan who the gell liked this message and ur not dying trust me I've had it since I was little and my life's perfectly normal with some hospital checkups every few months
Don’t worry, be happy, ooohohohohohh.
Not unless it’s bad extremely
I subbed to you
When i was born the doctor told my mom i had a Ben spin and when i was around three years old thats when my mom found out i was blind and now i have pain in my heart aometimes and i have a leak in my heart and have marfan syndrome 💔
Prayers
Well today?
Hi Siri!
My fiance has this!
So you are saying I'll get a girl too ?
Yoooo they look like endermen.
I mean, I have bad circulation, low fat percentage, bad vision, flexible joints, but othing in the chest, back or hands/feet like that. I'm just an ectomorph yo.
I also have marfans
You well today
why they make all the models so deformed goddamn
I went for a checkup today cause I had a cold then the doctor asked about my glasses and the crater in my chest and my height and hands. Looks like I have this 😂
Hatred Clay lmao god no me too
me too 🤦🏽♂️
Hatred Clay please lwoant now more apaut the marfen
Hatred Clay you don’t have it until you’re diagnosed
That is no laughing reason
My arms and legs are always warm like always even if im freezing to death
I have this disease
My whole family have this and me
That's uncommon. It's an autosomal dominant disorder on non-sex genes, which means that there's normally a 50% risk of inheriting it from an affected parent. If both parents have it, there's still a 50% risk of being affected, plus a 25% risk of getting both gene copies, in which case survival until adulthood is unlikely.
I have 10 siblings...6 of us have features of marfan including me....
So is my boyfriend :(
Why marfan why?!?!
he can live a long happy life.. I've been reading a lot about it..
when someone we love has a disease we shouldn't read "symptoms" only it makes us scared..
we need to read how to live with that disease and how to support our beloved..
irvin dirden relax marfan syndrome affects people in different ways he could be fine
He can still live a long life, but if not treated and checked it could be dangerous. You shouldn't worry, just give him support
Why? It's a genetic mutation, but it generally doesn't kill until after the age of reproduction, so it's not selected against by evolution. It might even be selected FOR by sexual selection, in that women prefer taller men.
i went to a geneticist And it seems i've got this thing
can you help me or advice me? i have marfan syndrome
Abdallah MOHAMED i mean, i have not much experience at it, but untill now, the geneticist is helping me a lot, u should see one .
+Lucas Gomes i already went to doctor ..in bones and eyes and stomic ...but no one give me any advise ..marfan in egypt here not found..finally i have problems in my heart i will going to doctor
Abdallah MOHAMED until now i had no problems in my heart, but i am still only 16 yo, i wish i could help more, but i know very few too
+Lucas Gomes thanks
don't smoke..what tall is you? im two meters
I'm literally fucked
I've got marfan syndrome
loving life you got lucky :D
vitoldas lizas what do u mean