Marfan Syndrome

[Skullslammer12345]

I feel your pain. I to also have marfans syndrome which was a mutated gene too for me.

[magicfingers1366]

My eyesight is messed up from detached retinas. I have severe back pain from this. I am 6 foot 7. First the doctor thought I had acromegaly but the heart murmur was a distinct clue to my diagnosis. They said I would never make 40 yet I am 45 so doctors don't know everything.

[futher2k]

I wish we had all this information a long time ago. my brother had marfans, he died in 1997 because an aortic aneurysm...we didn't know 'till after his death that he had marfans. he used to go to the gym and he loved to ride mountain bike....if we only knew maybe he would still be here......

[schon74]

im 36 i have severe marfans so did my mother who died aged 29, i have had aortic valve and route replaced when i was 23 and harrington rod in my back when i was 13,my spine is now severly curved giving me alot of pain. in 2003 o had detatched retina gave me 3 weeks in hospital. on the plus side i have a 11 year old daughter who is fit and healthy and shows no signs of marfs :)

[groovysherrie65]

Marfan's or not, he is a very handsome young man! Strikes me a very kind person, too!

[TigronCCX]

@groovysherrie65 i wish i looked good. i used to think that i had long, thin arms because i never exercised, but i never knew it was actually Marfan's, so im stuck with having lanky arms. makes me feel wimpy. i do have friends though, so i do have supporters

[pacomonkey007]

I'm 19 and I got Marfans, it can go to hell. Ruined my chances of going to the military, pursuing a career in the FBI, and chances of going with a lot of girl when I was in school. I'm not gonna lie and I dont mind saying it on the internet, I got a death sentenceand I'm just live life fast and die hard.

[BlackValleyRequiem]

@pacomonkey007 Jesus Christ man, educate yourself better on your own syndrome. Those with marfans, if treated properly now have roughly the same life expectancy as a normal person, you just have to be careful about the thickness of your blood and not to over exert your heart. Just be diligent in treating it and you can live a full happy life -.-. My boyfriend has a shunt, an artificial heart valve and has had three more major surgeries and hes doing just fine.

[pacomonkey007]

@BlackValleyRequiem I know I have know I have a long life expectancy and all that sh*t but I don't find that long life worth lving if I can't pursue the goals I want in life. I know I can live a full life, but a happy one, eh maybe

[monkmell]

This is a really good video I think, you did a good job!! Sort of like 'giving Marfans a friendley face' if you know what I mean! The information is good, but Im afraid that the truth is it mostley does cause more problems the older you get, but so does normal ageing! Thankyou for doing this video....you have inspired me....Ive just got an Iphone and am just waiting for an excuse to use it!!!!

Well done and thanks again

lots of love Gillian xxx

[monkmell]

This is a really good video I think, you did a good job!! Sort of like 'giving Marfans a friendley face' if you know what I mean! The information is good, but Im afraid that the truth is it mostley does cause more problems the older you get, but so does normal ageing! Thankyou for doing this video....you have inspired me....Ive just got an Iphone and am just waiting for an excuse to use it!!!!

Well done and thanks again

lots of love Gillian xxx

[mrgbennet]

Yes, it iIS a deteriorating condition. Not a can be.

[SaveChinaTiger]

I have it too and none of my family has it

[wapawelek]

frfluffybottom relax  --- progress of medicine in problems of interest to us is enormous. Now, the average life is extended up to 50 years and growing.

[deepwells48]

I have marfans syndrome and my father has marfans.  we both have had aortic valve replacements. i had mine right after my 22 birthday and my father had his 20 years ago. I grew up feeling like i had a death sentence but i know now life goes on after the surgery, though i've had to make some changes in my lifestyle. marfans patients are bless to live in an era with advanced medical technology.

[stokmarknes]

pectus carinatum.

[jasonistics]

I've just discovered this disorder and it answers a lot of questions about my body. Wow. I really am a freak of nature. Spoon chest. Long legs, arms, fingers and toes. Hammer toes. crowded teeth. scoliosis. lower back pain. small, thin wrists. stretch marks on my waist. double jointed. knee problems.

They used to make fun of me in gym class - called me skin and bones and beat on me.

[WobbleDucky]

@jasonistics i feel u man, this is depressing, i wanna kill myself right now

[monkmell]

@jasonistics

Hi there!

You are not a freak of nature! I know of lots and lots who have this syndrome and you are wellcome to come and join the 'rest' of us freaks! Seriousley, its not 'cultish' or anything, just lots of normal, nice and understanding people. There is something called "the Marfan List" that has been a god send to me, give it a try...If you have any problems mail me!

Take care you and you are NOT alone, ok! xxx

[jasonistics]

@monkmell

Thanks for the interest. I'll definitey check out your link. At least I haven't had any heart problems yet at 36. Had a heart scan last year and all checked out ok. I feel bad for those who do.

[drfuture2050]

you are a clever guy

[Invisistill]

I like the part where he says he's "lucky" because he doesn't have many of the physical aspects of the disease lol, just the Aortic problem. The one that kills most of us :P We should make a huge wall that's just a collage of pix of all our scars and "deformities" that'd be cool for some awareness campaign.

Love to all my fellow "Mutants" out there ;)

[krozification]

@Invisistill lol I refer to us as "mutants'' too

[wapawelek]

My name is Paul . I am 40 (years old) fellow from poland . My feders dead in centry 38 year .

I am after whole operation aortic . I is felt presently very well .I am after Bentall operation and hybrid ( 3x stentgraft zenith ) Hybrid operation was pioneer in my country .

I accept any changes, from I exception of change me :)

[TainaAtheist1]

It is too bad that medical science cannot discover the outside forces that causes the "mutation" form of Marfan's as was mentioned at 2:05 of this video.

.

[krozification]

@TainaAtheist1 yes

[BluelightSpike]

You better go and check Michael Phelp's case...

[zoto211]

well i was told that i might have the marfans iam 6 and about 160 and long arms its  a part os this sys

[Lassielurv]

Conor, Wouldn't Being really tall be considered a skelatal deformity? I thought it was diagnosed when you showed more then a few symptoms? As he said, this is a conective tissue mutation, his aorta is weak, He has long joints, and risks from those. With a mutation, the symptoms vary. It is from my understanding that with a syndrome, the symptoms vary.

[ladyfox825]

I've had Mar Fan's Syndrome since I was born. My Father had it and his Mother had it before him.

[beking32]

hey im goin thru the same thng. hit me up on yahoo bk2003c04

[vhsdevil]

Im 15, and my chest really sinks in....it has been starting to hurt lately, This won't kill me right??

[cedricalien]

me 2 :(

[frfluffybottom]

I have marfans,I'm 19 and way taller than my brothers,I'm 6ft 4inches and my bro is 5ft 8!!!!!!!!!

but marfans killed my mother and two aunts so I do realise that its serious and that my life expectancy is slightly lower than most peoples.Hence the reason I promised myself to live life and don't be afraid of anything........I cherish everything and love life im not afraid of tryin anything and in a way am grateful to marfans for this.

[xAuBuRn]

I just got diagnosed with marfans today. I really don't know what to do.

[lori1451]

Jesus Christ can help you honey. He loves you very much, Pray for strength and wisdom.

[02footej]

enough of the religion ok? xAuburn i am an agony uncle and i am happy to talk if you need some comfort or just someone to let your anger out on, just message me if you ever feel alone, fortunately i will give you honest advice instead of just throwing 'jesus loves you' at you

[TheCroire]

You my friend are what the worl needs a whole lot more of, helpful, understanding people who don't give you religious bullshit

[jateb52002]

anyone know where to measure exactly for the upper body lower ratio thanks

[alexGRiM562]

my doc said i mite have marfan syndrome i don't think so im like in the state of denial. but yea can i still be in boxing?... if you can just private message me with a educated answer please

[radbrent]

I'm really scared. I think I have marfan syndrom.

[amberjohnston1989]

wow, why are u typing on youtube? go to the doctor.

[madboutspringsteen]

Fair play guy!!!!!! Very courageous to talk about it.

[memather]

So, everybody that has marfans... are you going to try to have children? 'cause it's a 50% risk of passing it along..

[caseyhunn]

hi my name is candace brown and i'm from newfoundland...my mom had died when i was two from not knowing she had marfans, before that my grandfather and unlce had died with marfans. i am 14 and i am going to the hosptial for check ups...i was in the hosptial about a month ago and they had found something by my chest and think that it my be marfans..i have never talked to anyone with this diease...my mom was also pregnant with me baby sister and had 3 heart attacks my sister had died 6 days after.

[BluelightSpike]

Holly shit.. u have it ruff gal.

Anyway... I didn't knew people could die of Marfan, i mean, Marfan its not like a viral disease... but.. i guess i have to do some research..

If you have marfan, there is nothing to be afraid off (Well... U have it rough... just.. hand in there), there are diferent levels, and (As far as i know) is not mortal.

It would be nice to know if you have the chest deformity? (Pectus Escavatum) If you do.. well, say hello to Marfan, if not, happy ever after.

[strawberrylaralara]

Thanks for the video I suspect my partner has it and his kids.

[supersmash43]

I think a lot of folks could possibly have Marfan's syndrome whether or not it's a dormant or dominent gene. But I think most extremely tall and skinny folks don't necessarily have Marfan's (i.e. Manute Bol).

[assezfolle]

i'm not particularly tall but i have many, many of the other symptoms...it's quite strange :P

[waveatatteredflag]

It -is- a dominant gene, but it can develop slowly and has variable expression which means that it can manifest itself differently in each patient. And it is one of the more common genetic disorders, approx 1 in every 3000-5000 people suffer from Marfan Syndrome.

[csustudent209]

One of my friends has it too. He doesn't have the heart thing but everything else he does. He is 6'10ft and wears size 15 shoe size.

[Asmarelda777]

I was diagnosed with Marfans when I was five, both my mother and brother have it as well. I am 26 now, and have undergone corrective spinal surgery, extensive dental work, and am preparing for eye surgery. This is pretty cool to meet so many people that know what Marfans is, and what kind of impact it can have on ones life.

[gostosa0315]

abraham lincoln was also assumed to have this disease and it has been foun in many of his family members who are distant relative living with this disease today. it can be very painful and very debilitating making life very difficult for the more seriously affected individuals

[gostosa0315]

it is an autosomal dominant disease that can present with many different problems including skeletal anomalies, vascular anomalies, and also dislocation of the lens of the eye causing a characteristic floating iris. It can present also with pectus excavatum (chest wall domed out). It can also cause aortic aneurysms which is why it is so deadly. They are usually extremely long limbed with spider like fingers, and may or may not have a heart murmur that can be up to a 6/6 in severity.

[YoJimBoHugabaJoe]

I was diagnosed just this week,after being misdiagnosed several times,it wasnt til my lung colapsed that it was diagnosed correctly.I have the crazy joints,headaches which cause vision spirals,low back pains,chest pains,arm pains,shortness of breath,unexplained fatiguehigh mouth paletee,speech problems when i was young(ok now)hunched back,unexplained strechmarks,cold hands/feet and stomach pains on the belly button,blueish hands I am also of the spontanious mutation as no family members have it

[Dansak8998]

im 18

[Dansak8998]

ive hd marfans since i was basicall born my mother has it 3 of my uncles have passed away because of it my grandad had the "mutant" gene as they called it it started of with him, i have to have my aortic valvve replaced on the 31st of this month n the mitro valve repaird iive also had an operation 2 years ago i had my aortic route replacement n i cnt see well enough to drivr so ive got it quite bad, my mums ok tho

[pxlslayer]

ive had marfans since i was 2, im 17 now. its a pretty gay disease. i hate the skinny part =(

[assezfolle]

well technically u've always had it...u were diagnosed at 2!

[mateyboy07]

I'm 22, I only found out I had Marfan's today, really wish I hadn't found out.

[supersmash43]

The most obvious physical characteristic of Marfan's syndrome is disproportionately long legs and arms, but obviously not all lanky person have Marfan's although beyond a certain point a person's lengthy ness mighty be considered unnormal. I am pretty sure several people I know right now have Marfan's.

[ChimeraFace]

I can use Wikipedia, too.

"Classifying a condition as a disease is a social act of valuation, and may change the social status of the person with the condition (the patient). Some conditions (known as culture-bound syndromes) are only recognized as diseases within a particular culture. Sometimes the categorization of a condition as a disease is controversial within the culture."

There, we're both right.

[ssamantha27]

A disease is an abnormal condition of an organism that impairs bodily functions, associated with specific symptoms and signs.

In human beings, "disease" is often used more broadly to refer to any condition that causes discomfort, dysfunction, distress, social problems, and/or death to the person afflicted, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes

[VICKISTICKI]

who ever says marfan is a disease is stupid i am a marfan and so is my brother we got it from our dad and i have gave it to my children i will never see marfan as a dirty illness yes marfans have problems but it could have been worse we could have been born blind and never have seen the world and all the wonderful things all marfans need to learn to just enjoy life and never let marfans get us down because as soon as you let it get to you you might as well be blind or even dead smile people

[ssamantha27]

AS YOU CAN SEE I CUT AND PASTE THIS FROM THE MARFANS WEBSITE FOR YOUR EDUCATION.

What are the signs of Marfan syndrome?

Sometimes Marfan syndrome is so mild, few if any, symptoms occur. In most cases, the disease progresses with age and symptoms of Marfan syndrome become noticeable as the changes in connective tissue occur

[grandbleu1985]

Hi ! I'm french and I'm marfan. I have 22 years old and I wish speak with other marfan if possible.I know nobody with marfan syndrome in french and it's not easy all day. Thank you and sorry for my english !

[YYZRUSHTASTIC]

Welcom to my life lmao

[ChimeraFace]

It's not a disease, educate yourself before you make a video.

[ssamantha27]

Its a connective tissue disease, so there for its a disease

[ChimeraFace]

No, it's not. No one calls it "Marfan Disease', of 'Marfan Syndrome Disease'. Calling it a disease makes it sound ten times worse than it is. It's melodramatic and annoying as hell. AIDS is a disease, Marfan Syndrome is not.

[TobyHine]

Too right; it's a syndrome. A collection of symptoms that suggest a genetic mutation. Look it up.

[charlieclown]

I don't like how he cut off his mom when she was answering a question, then he goes on to say he was a mutation thanks to his mom drinking or doing drugs. She looks like she is crying on the inside.

[hh73]

can that be? the bit about drinking and drugs causing marfans?

[waveatatteredflag]

I did a project on the syndrome. From all that I read, drinking and drugs wouldn't cause the mutation of the gene which causes Marfan, unless the mother was doing heavy drinking or drugs during the first few trimesters of her pregnancy to cause a spontaneous mutation of the gene. Only 15-25% of all Marfan cases are caused by spontaneous mutation. It is said that approx 50 000 people suffer from Marfan Syndrome in the USA. A person is BORN with the disorder. Hope that helps.

[waveatatteredflag]

Also note, it could just be a random mutation. I'm not saying that the mother actually did any drinking or drugs. That is just the only link I could think of between the syndrome and what had been said.

[xLilycakesx]

Hey i have marfans too! im 14 and i was diagnosed when i was 2. I had two eye operations to remove my lense when i was 4, and have heart, eye and lung problems. Physically, im completely normal [5'6 - my parents are tall but don't have marfans -] exept im underweight. I talk alot of medicine too, and ill probably need aortic surgeries.. If anyone wants to talk, email my youtube!

[smiles809]

i have marfan syndrome and im not tall im only ft 5 2"

[supersmash43]

Well, there are certainly some advantages for Marfan's syndrome: long limbs and great height!

[BlueBoo123]

thanks for making a serious video instead of doing it as a joke. i was diagnosed with marfan's when i was 2.

I had surgery when i was 10. i got lucky.

[enpop1]

Hi - I'm 33, and was diagnosed with Marfan Syndrome when I was about 9. The posts here from people who have gone through surgery - were you on beta blockers before? What was the diameter of your aorta at time of surgery? Was anyone here also diagnosed with scoliosis and/or kyphosis? My advice - know your physical limitations, don't be TOO defiant (doctors know some... but they don't know EVERYTHING), and for all the young men out there that have this - girls love tall guys.

[MindWraith02]

I have scoliosis. and yes, girls do like tall guys :P

[sundog47]

60 years with marfan.they didn't even have a name for it back then.I have had a complete disection arch-arch(type b). I'm still alive after 3 aneurysm operations. Work on core body strength and maintain a healthy diet.Join NMF and never let em see you sweat.

[linkasofia]

Marfan Syndrome is NOT a disease, it's a genetic disorder. Sorry but that is a serious pet peeve of mine.

[VICKISTICKI]

thanks for saying this it gets to me when people says its a disease we are not dirty we can only pass it on to our children

[momadhtr]

AMEN AND THANK YOU!!! I was diagnosed with this when I was 21. I am now 38. I am 6' 08" and weigh 285. My chest is deformed (concaved). I struggle, but I get by. I do have heart problems too, but I am not going to stop living.

[raspopitul]

Hey there guys and thanks for this video !

Im a 26yo guy and 2 months ago i just had aorta disection and a lot more complications !

Now im almost okay (or i think i am) but i know the danger is still near ! Now i know what it means to have Marfan Syndrome and i would like to find others from my country (Romania) to start a fundation or something like that ! Maybe we could help others !

[kandikane64]

Wow great video, very informative. My son has it and too was around the same age as you when they found it. How old were you when you had your first surgery?

[alainnangel]

Thanks for sharing that also. My brother and I have it, but he has it worse than I do and he is in the army. He has to have surgeries done and as for me, I'm waiting for them to completely diagnose him so then I can get checked out. I'm sorry that you have it and I hope things get better.More people should know about Marfan's.

[carcrazyman]

Very good testimony! I also have Margan Syndrome and have had my Aortic valve replaced with a mechanical valve. FYI: I am the first male on my dads side of the family to reach and pass age 39. I am now 46.

So remember that when you start to feel down or afraid

[ILovePiJays]

Thanks for sharing that. More people should know about Marfan's.

[tantelotte68]

Veldig bra informasjon

[treatment32]

driver du med skolerapport?