Marfan Syndrome

[47475464]

you know i think marfan is actually a miracale.its becouase i ALSO have asperger syndrom... but not the servere one. why you ask? bullying. so BECAOUSE i have asberger syndrom i WOULD get bullyed more frencruntly but becouse im godzilla hight i dont like a few days ago when i was sitting a kid was like"hey you wanna fight with me?!" then i stood up and he seid"thats what my friend seid not me!".plus i dont have a stretched heart -phew-. so to some it may be a curse but to me its a miracale.

[jssmenakokoska]

Expression on her face shows that she feels bad because people are always staring at her.

I am surprised by that, because I do not see any body deformity. what I see is a beautiful young woman.I have very similar body structure, and I have "lost" so many years worrying what do people think about it. It may sound a cliche but it really isnt worth it! So for all Marfans out there - just enjoy your body, you have the right to be thin, long, unique and to feel beautiful about it.

[shrek228]

If you recognize yourself in this video, you should undergo the genetic tests. It´s better to unnecessarily spend some money, than die in 30 or 40 years. Trust me.

[MusicTherapy82]

I just came home from my sons dr/s appointment ( him & my husband have it) I came on here to double check something I saw in his echo-cardiogram ... It is not a syndrome I would wish on anyone and I hope people who think they have it check with their doctor, untreated can kill you young and treated can help save your life ( my father in law died when he was 30 they had no idea the family carried Marfan Syndrome ) It is not bad if you take care of yourself, and follow all doc's instructions :D

[oDannnYx]

pretty sure I have this disease:(

[MusicTherapy82]

@oDannnYx I believe its a syndrome not a disease.. :D but definitely check with your doctor to know for sure .. it could save your life to know :D

[AGGIZMO360]

:O i know this is sorta bad but I WANT IT SO I CAN BE JUST LIKE L!!! XD

[mormonchick1011]

if i had that, i would so be the witch from l4d for Halloween!

[LoveMyAirman27]

I have it legally blind so far heart aorta is dilated more then normal but stable I thank god I did not get it very sever

[bmw0208]

I think I may have marfans, however I was okay sportswise in school stamina was excellent, strength okay, developed pectus excavatum during teenage years, height wise I'm average, 5.8, fingers are flexibleish,

However I recently been having heart murmurs or whatever u call it, at random intervals?

How do they diagnose marfan?

[jedmondson67]

@bmw0208 That I know of, there is no definitive test for marfan. Although considering it is a dominant autosomal disorder, there may be a genetic test. My guess would be that the diagnosis is done through an h&p (history and physical).

[teckiemom]

@jedmondson67 Actually they just changed the diagnostic criteria and yes there is a genetic test they can do (We know the exact location of our mutation).

Check out marfan org

[jedmondson67]

@teckiemom There is a genetic test that can be done, which is very complex, and is not difinitive. According to marfan dot org. Diagnosis is done by a specialist in connective tissue disorders, based upon multiple factors (genetic tests), and h&p

[pandabear42631]

I have Marfans so does my sister

My momma passed away from it

[HannahCampbellCo]

@pandabear42631 so sorry

[pandabear42631]

@HannahCampbellCo

Its okay im used too it by now (:

An we have amazing doctors!!

[BirdiewasHere]

Is it possible I'm just skinny and have weird hands and a bad back lol....Someone answer please.

[FengRuiXuee]

@BirdiewasHere It doesn't hurt to talk with your doctor about it. Not everyone with Marfan is unusually tall or have the really bad vision. How someone is affected varies from person to person, what is important is to get checked if there's any reason to believe you might have Marfan.

[BirdiewasHere]

@FengRuiXuee

I did get checked I just have bad posture and "ET fingers"

but he also took notice in my hair changing white and wants to see me again

said its not normal for someone my age

[teckiemom]

@BirdiewasHere There are several related connective tissue disorders that can have symptoms that overlap with Marfan's. I would check out the National Marfan Foundation website at marfan org (YouTube won't allow the dots) & look at related conditions & differential diagnosis. Best wishes!

[raybd]

the thumbs sign is called "Steimberg sign" and the wrist sign is called "Walker-Murdoch sign", just for curious

[dnrongo]

Marfan syndrome... MoreFun syndrome?!!!??!

[wildcat1366]

Having Marfan Syndrome is not the end of the world. Sadly my back is getting bad and my knees ache from arthritis caused by this.

[xXxSceneXGorexXx]

her hands remind me of hands in like animes ..

they are so pretty and nice D:

[LittleJamesL]

I'm being examined for this because when I was10 doctors discovered that my heart valve leaked and I'm 6,5" and still growing also I am double jointed have problems with my eyes and abnormally thin although I have all these symptoms doctors are still researching to check for other possible causes and at the moment my breathing us becoming worse so I may be starting to get lung problems

[emurphy66]

Like if you have Marfan's too!

Hey, don't knock it, Abe Lincoln had it too.

[LocoRico89]

@emurphy66 That's still speculated if he had it or not

[emurphy66]

@LocoRico89 No it's not. They examined his death mask.

[LocoRico89]

@emurphy66 Just by looking at the mask? That's it?

[MisterAlbertoPiano]

@emurphy66 And Rachmaninoff, Paganini, Austin Carlie, etc. Lots of people has this Sindrome

[DreamMaker199]

The length of my arm span is almost the same as my height . Im 13 and my height is 170cm . Does that mean i have marfan syndrome ??

[ariellestack]

@DreamMaker199 Do you have any other symptoms? I'm 14, and at 171cm my arm span is longer - at 174.

[YungMalThaKid]

nowadays in the past half decade bein dbl joint and lanky gives a person 2 stand out and b unique the generations changing esp in dance its a revolution

[cymercenary179]

she isnt that weird



[MelissaMockingbird]

She's so lovely! Look at her smile <3

[burrrandy]

her hands are so beautiful.