Marfan Syndrome Public Service Announcement

[kjburger12]

I was wondering if anyone hear have heard of Marfan-Like Syndrome? It is what I was told I had.

[JonnyDMa]

@kjburger12 There are several diagnoses that physicians may consider if someone has some, but not all, features of Marfan syndrome. You shoudl call the NMF and speak to the nurse on staff- 800-8-MARFAN x 26.

[TheMarine1903]

my friend is a marfan he is actual the prince of the marfans. he says they are an alien race thats soon to take over the world. he consantly talks about bout his home planet of marfainia with has 26 suns revoling aroud it.

[sampsonitelodge]

bin laden died of this very syndrome in 2002 @ a hospital in dubai. What the white house is currently spewing is all BULLSHIT.

[DarkenedClarity]

You will always have it you are born with it... it starts to show in your teens. I have it im 26 years old so far so good but I dont go have check up like I need to but thats cuz I dont worry about it my times will come and I wll be ready for it all alone anyway so dont make it hard to say that crap.

[MissTwiggy96]

I had marfan syndrome my whole life and I am 15 now i am lucky and my condittion isn't verry bad. I am still tall at 6'3" but I am not as skinny and i have been able to live a normal life to a extent and the perc is you don't really participate in gym. I still ride my horses in rodeo even though my doctor doesn't like it so much but i still only live once and it is something that makes me happy so I am not willing to give it up.

[Lee420Boss]

my mom died from this wen i was 4. and after she died we found out that me and my twin sister both have marfan's.

[lolipop123654]

I have marfans syndrome... Luckily it isnt servere. I used to love playing sports and being active all together... But now i understand that i have to take it easy. It does suck, but i have learned to live with it and joke around about it with my friends.

[SentimentalXSydney]

i have marfans and i hate it

[cyitor]

The boy I grew up with died on Tuesday resulting from this disease...his heart literally broke, and that was it for him. He was only 17...

[puddinglord]

I was actually diagnosed with this 4 years ago at age 16 and back then they said my body would slowly start ''failing'' in the next years.

sadly enough it is starting.

[DigitaIL0VE]

I'm a Marfanoid, but am lucky enough to just have the pectus part..other than that and being 6'4 im quite normal. Lucky me

[irkofan]

My best friend (friends for 11 years now) has this disease. She's had major surgeries on her eyes, heart, and some for a pace maker. Her scars make hers horribly self conscious, but she is one of the most beautiful people I know--on the inside and outside.

[killallianceftw]

Its a witch walk around them

[DanteWhite]

i wish i had this

[roguegirl29]

@DanteWhite You're kidding, right?

[DanteWhite]

@roguegirl29 nope cus if i had it i would be tall and get chicks :D

[roguegirl29]

@DanteWhite Who cares about getting women? This is your life we're talking about here! Marfan Syndrome will KILL you. Jonathan Larson was 39 when he died. THAT'S scary.

[DanteWhite]

@roguegirl29 so, XD!! id rather only live 39 years of good times than live 1000 years of lameness

[SentimentalXSydney]

@DanteWhite  no you dont i have it trust me u donttt

[paddyjoejr1]

I Have Marfan Syndrome, I'm 54. Was Diagnosed In 1998 At 42. But It Hasn't Stopped Me As Long As I Keep Taking My Warfarin Once A Day I'm Fine!

[Lee420Boss]

@paddyjoejr1 whats warfarin im on atenolol is that the same

[jag00237]

I have Marfan's, I'm 22 now and I got diagnosed with it when I was 8....

[uraharafkedme]

god damnit im a freak!!!!!

[chris3d165]

noo i dont want to die im only 15 common just today the doctor said i have this now i have to do a whole lot

[tcpill]

im am getting a heart sonagram to coferm i have it and i show 10 the sympthoms

[Zytglogge25]

I've just discovered I have marfan syndrome... Will I ever have a normal life??

[jennaj198]

I was diagnosed with MS when I was 19 my dad passed when he was 38 n I was 9 I took it hard still do they did a autopsy and it revealed he had MS and I was taller then my brothers to skinny to fit n so I looked into the symptoms I have reverse scoliosis, pectus carinatum, CHF, long fingers toes arms n legs so I went to Cincinnati OH Marfans Clinic and got the diagnosis now I want to have kids and they tell me I shouldnt cause of all the chances of passing it to them it hurts im depressd still

[PhilipineMan]

I was born very short and ate unbelieveable ammounts of food (Ate a box of KFC chicken and two large KFC chips at age 6... aswell as coleslaw and KFC.)

I have a short torso, thin wrists, very long toes, long legs and a thin head and occasional pains in the heart mostly due from surrounding muscle complications.

Other than the above I have a very mild case of mafran syndrome.

[TrueMoore]

I think I could have Marfan Syndrome.. I`ve got long arms and legs and a very long head.. also my fingers a re very long, and I had a inguinal hernia some time ago. Im 16 years old and kinda large for my age and really skinny. Do you think I have marfan syndrome ?.

[JonnyDMartin]

You should talk to your parents and your doctor about it. If you have questions, you can call the NMF hotline at (800) 8-MARFAN, ext. 26 to speak to the hotline nurse to discuss your symptoms and next steps in seeking an evaluation.

[isaiah4899]

@TrueMoore you could.. i have the same issue. i wouldnt really call it a problem tho, you should be fine if you see a doctor

[Thecrudetubers]

@TrueMoore im same age as you and have got the same symptoms and and caved in chest and i can dislocate my thumb and stuff

[722guy]

I have marfan syndrome... but I dont stop moving on with life.... its tough knowing in the back of your head that you can drop dead any time.... but u gotta do what u gotta do...

[LegoLee329]

i have marfanS

[BrandXdude1567]

there is also a simple test to diagnose marfan syndrome (not completely sure, check it out on google, type marfan diagnosis test or something) if your thumb can go past your hand it could well possibly mean ya got it, i was diagnosed at birth. im currently due in for a scoliosis op in january

[BrandXdude1567]

im currently 14 years old, male 6'2 - 6'3and have marfan syndrome. and at cedrication, im 10 stone and have stayed that way for a year now. my brothers both got it, by the time they were 16 they put it on a bit. just means we're unique, and you can crush the ignorant lil shits who dont get it xD

[wattever333]

or you can educate them.

[rastatouf2225]

Hey guys don't freakin up. I'm 19 years old, have marfan, and had a heart operation last summer because of that syndrome. I learn there that it doesn't mean anything if you are tall thin or other things. But if you want to be shure go check a cardio and he will may tell you. The last thing to say is that marfan is really hard to diagnostic, and I met a guy in my hospital room who had all the symptome and did the same operation as me, but the doctors couldn't tell him if he gots Marfan.

[thisissotardo]

maybe my bf has this :(

hes 6'3"

is crazy skinny with long limbs and skinny fingers

and has a funnel chest...

this really worries me... :(

[SIimeBob]

i have the marfan syndrome too

i have some strange marks on my back

i never gain weight even if i eat like a pig

and i can dislocate my arms easily without any pain (fun trick to do in class)

XD

(sry for bad english im french)

[cedricalien]

will I ever gain weight? cuz I have marfan syndrome.

[xthilde]

yes you will.

i was very skinny when i was younger, but now i look healthy. And i suffer from MS

[cedricalien]

thank u!

[cedricalien]

how old when u started gaining weight exactly?

[xthilde]

well, maybe it's because im not that ill. But, i look quite normal and im 18.

but, my only failours is, something with my heart and that im tall and such things. But, I guess i was about 16 when i started gaing weight.

[cedricalien]

thanks.

[evblazer]

Diagnosed when I was 6'2" 115lbs at 15 years old. Stopped the daily multi hour training in contact sports and started gaining some wieght. When I got married at ~22 I was up to 180.

Years and years of working in a cubical in a stressful job, long hours and eating crap got me over 310 so yes you too can gain weight when you have marfan syndrome don't ya worry. Once the youthful infinite fat burning wears off you can really pack on the pounds.

[cedricalien]

but u still have a thin wrist? 310 lb!

[evblazer]

@cedricalien

Yes I do have thin wrists. I am down from 310 but was posting a reply because I hadn't seen any morbidly obese folks with marfan syndrome throw that in there. Obviously with a connective tissue disorder carrying around an extra hundred and fifty lbs on your person is even harder on joints and everything else compared to a non-marfan person and is a bad idea. And the limitations on physical activities do make it difficult to lose that weight and keep it off.

[cedricalien]

@evblazer thanks for the info.

[ichigo1847]

cool video

[SaberStriker2416]

I figured out I had this disease about a year ago and i have every physical characteristics of marfan syndrome and yes i do have a chest that grew inward and if anyone has any questions please feel free to ask.

[198RayMan198]

one of my best friend have this

=[

[runstephanierun]

i have all these charcteristics. Except flat feet, and hammered toes. :(

im kinda scarred now.

[lennyt11]

It's hard to tell your friends if you do have marfan syndrome T.T

[Maxito4321]

i tell them freely i have most features but i never went a surgery or anything i workout regularly it takes more tiem i guess for my msucles to build up

[jfrancisco19]

im a marfan patient,, i have all the symtoms of the said disease.. I was operated last 2007 in aortic aneurysm.. Im a Filipino.. but now im still surviving w/ that disease. To all the marfans out there dont be scared w this disease but be brave and pray to our Lord Jesus Christ to give us strength and wisdom.. Last year i thought im already dead by now.. but still here and almost normal,, to all marfan... dont hesitate to mssge me.. what ive been going through at this moment..

[bsboy20]

fuck you jesus doesnt exisit you die and nothing will happen but the happy people how wont have to support you

[ljohnf]

if i die then i die no imaginary man is going to save me. Why would God let thousands die only to save one man?

[Timxgr]

i have Pectus excavatum and i m so distressed =/

[PancakeFlaunter]

Yeah. I thought having pectus was bad enough, but I recently found out that I have many of the signs of Marfan Syndrome, ie: Arachnodactyly hands, a high palate (in the mouth), high eye pressure (could lead to glaucoma), etc. I'm going to try to get it properly looked at sometime soon to see if I really have it.

[SaberStriker2416]

yea i have pectoralis excavatom 2 and its hard to deal with it but if u need any advice ask me if u want

[Timxgr]

thx for your help my friend :) I'm going to gym and I try too hard to fix my chest :) There is a nice improvement so I continue :) I don't want to go for the nuss procedure, it's painfull! I think my body is ok , it's not bad :)

Thank you again !

[UchihaDraco]

o_o wow i might have marfan...i have almost all of those symptoms except near sighted, and the flat foot / hammertoe thing. kinda scary o_o...

[Pixelbuddy]

Me too. Although I don't have heart problems... as far as I know.

[BrawlinBaird]

i pretty positive i got marphans in the skeletal area, im 15 yrs old, heart's strong, vision's awesome, no colapsed lungs; but i wear size 13 in shoes (mens), stooped shoulders, spider-like hands, and my armspand is 4 inches longer than my height, and im 6foot..

[lastdispatch1717]

fuckhead

[blinkedd18]

My doctors test me and said I dont have it.

But I'm still worried.

I can do the thumb and wrist sign, and I think its a very major sign.

What do you think? Should I trust my doctors?

[JonnyDMartin]

The thumb and wrist signs are consider minor criteria. If you have other questins you should contact the National Marfan Foundation's nurse at support(at)marfan(dot)org, or 1 (800) 8-MARFAN x 26. She will be able to help you with your question.

[blinkedd18]

So you think I shouldnt worry about it?

I always thought its a very major criteria.

other than that, I dont have any major criteria symptoms, and the doctors already ruled it out.

What do you think?

[sharpdemon]

i have marfans

heres wut i have

all the things listed in the video

shortness in breath

tall height

the main thing i look at is the curve dat goes inwards in ur chest

go to a cardiology [heart] doctor

[brian472]

Hey just woundering if anybody else here had to give a blood and urine sample as part of testing for marfan syndrome?

Im woundering because i have done some research on this but could not find any reason why my docter would need to take blood and urine

An educated answer would be greatly appreciated..thanks

[JonnyDMartin]

You should contact the National Marfan Foundation's nurse at support(at)marfan(dot)org, or 1 (800) 8-MARFAN x 26.

 She will be able to help you with your question.

[boredtaco]

(cont.) We also get to learn about how cowardly people truly are-people wonder why we're so thin-if we're anorexic, bulemic-but they don't have the balls to come ask us, instead they'd rather assume there's nothing wrong and mock us.

[boredtaco]

Um, from what I understand, we basically can't gain more bulk no matter how much we eat/work out. I don't mean that LITERALLY, of course we can get bigger muscles for example, but they'll still be smaller than a normal persons even if we can lift more. So I guess it's good for deception-we look weak as shit but can lift alot. I'm only 16 but I've discovered that Marfan's actually brings out the evil in people because they like to judge and mock.

[kerrymckenna]

I have Marfans along with my mother who is in ICU after a lot of heart surgery last week. I have had many operations on my eyes and I have many of the Marfan traits...

[WingChuApprentice]

- extreme near-sightedness

I do have problems with my eyes, but for long range (because i stayed too much on computer)

- your arms are longer than your height by a significant margin

My wingspan is about 5 cm shorter than my height

- pectus severe enough to require surgery

I do have pectus, visited a physiotherapist, and got some exercises. Not severe though.

- scoliosis greater than 20 degrees

Nope, not a 20 degree. 9 I think.

Does that mean I don't have marfan's syndrome?

[JonnyDMartin]

Only a qualified medical professional can make that determination. You do NOT have to have all of the features to have Marfan syndrome.

[supersmash43]

Shouldn't it be your wingspan that is longer rather than shorter than your height? btw I am only 5,9 1/4" (and 140 lb) but my wingspan is 6,2" and I have huge hands and size 13 feet and I don't have Marfan's.

[boredtaco]

That's the problem with Marfan's, it's a checklist where not everything has to be checked off. I personally have it, but am short for my age and for having Marfan; only 5'7''. My palms are larger than my fingers (although my palms are also very small compared to today's youth) and my fingers aren't that long, neither my toes, for example.

[adfasdfasdfluy]

lol. ive got marfans. and i got diagnosed at 14. i dnt rly care. lol

[emmamariewalker]

my boyfriend has marfans syndrome and i love him more than the world. i hope that people who do think they have marfans or have the symptoms go and see a doctor as soon as possible.

[triniety22]

if both of ur parents doest have marfan u need 2 major criteria & 1 minor criteria in different body parts to confirm it.

[brian472]

i have many symptoms of this but my docter told me it was unlikely because i have no family history of it and my heart appears to be in good condition.wat do ye think?

[JonnyDMartin]

Approximately 25-30% of people with Marfan syndrome have NO FAMILY HISTORY. If you have "many symptoms" you should be evaluated. Contact the National Marfan Foundation at 800.8.MARFAN (extension 26) for more information.

[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

[mafanskid]

just because you were tested and it came back negative doesnt mean you dont have. the test could be a false positive, thats what happened to me. or maybe you dont have marfans but have a different connective tissue disease like ehlers danlos. you should go look it up. it could save your life

[Dragslo]

There's so little about marfan in my language, arent marfan people able to gain weight?

[iloveskiing13]

my brother also has marfans disease he is ten years old, this video is sooo sad :[

[xzero0100]

it sux!

[foetsiegirl]

sooo sad for the people who have this.

for people with Marfan's syndrome - I wish you all the luck I can wish you

really good luck

[Tyreleon]

I'm only 5'11 but i have a wingspan of 6'4, and 37 inch legs and a 20 inch torso.

[LDrewski]

Generally, you should be concerned if you have many of these symptoms you should check into it: - extreme near-sightedness - your arms are longer than your height by a significant margin (I have arms longer than my height by 2 inches and I don't have Marfan's... having long arms doesn't mean you have it!) - pectus severe enough to require surgery - scoliosis greater than 20 degrees

Just because someone is tall, nearsighted, skinny, and has pectus doesn't mean he has Marfans...

[LDrewski]

Remember that our minds our tricky little devils that will convince us we have things that we really don't.

There is such a thing called an ectomorph. I.e., a body type characterized by long limbs, low muscle mass, etc.

However, those of you who are convinced you match enough symptoms, SEE A DOCTOR BECAUSE THIS IS IMPORTANT.

I was convinced I had Marfan's because I am an ectomorph (6'4" skinny and lanky) unlucky enough to have pectus that required surgery. Turned out I didn't have it.

[ajdog15]

im 6'5 lanky and slim with and i recieved pectus excavatum surgery to fix my incave chest. i have giant hands and feet and was tested for marfans syndrome but didnt have it. Are you by any chance athletic? i know this sounds weird but im curious

[LDrewski]

Hard to say. I was actually diagnosed with infant cerebral palsy but got all sorts of therapy as a infant so that my brain would relearn certain neural pathways... if I remember my mom explaining it to me correctly.

Considering that, I'd say it's a blessing enough that I walk without a limp and can play basketball just like any other guy.

[OPHELIABUSH]

oh yeah im very tall 6'5 and the age of 14, also i have stretch marks on my arms and legs

[OPHELIABUSH]

i have about 5 of those psysical symptoms, i have a curved spine, long arms and legs that are double jointed, very long fingers, and my eyes are very blurry on the sides, even then i can not see very far, and my joints ache constantly. I am wondering if i have this Syndrome, i am a little bit worried but i have had these problems my whole life, and i am not afraid to die, but that would suck to die at the age of 14.

[llennroy]

phelps has marfans but his torso is long not short. I could understand if it's normal but his is the complete opposite

[supersmash43]

proof?

[JonnyDMartin]

To clarify: While Michael Phelps does have many features suggestive of Marfan syndrome(long arms, tall stature, crowded teeth, large hands, and more), he indicates in his book that he was evaluated for Marfan syndrome at Johns Hopkins in Baltimore, but the doctors determined at that time that he does not have the condition.

[ajdog15]

i had a incave chest, i am 6'5 160 pounds size 15 feet and long fingers which are many of the symptoms but i too got tested and they said i did not have it. the odd thing is, like michael phelps, not to brag but i am very athletic and cordinated but i have many of the common symptoms

[Behindyew]

I have this 16, Problem with my heart vessels waiting on a cardioligist for god knows how long =.=

[Cmoneythegreat]

Man I Went To The Doctors I Have This

[Irishnozz]

eh i need to get tested soon for this, but everything about it sums up to what i have lol stretch marks cold feet tall, chest cave, very thin wrists, tall ahhh lol thank god most of it can actualy be fixed so looks like a have a adventure to look forward ta!

[batistafan98]

I have Marfan syndrome. i am 17 years old very tall have stretched marks and near sight but thank god i dont have problem with my heart vessels

[supersmash43]

somebody say that having an armspan longer than your height is a syndrome of marfan's...lol then most people in the nba must have marfan's then.

[haraldg]

actually, some of them do ;)

[batistafan98]

i Have marfan syndrome too im tall and a curved chest inwards and near sidedness

[fenderbender92]

me too, we should go bowling sometime :)

[haraldg]

lol

[YoJimBoHugabaJoe]

i have this,and my lung collapsed on thursday,just out of hospital,PAIN

[woodystrummer]

Is Marfan's associated with OCD? Just wondering, I know someone with both.

[assezfolle]

I have marfan's, and my bro has ocd, but neither of us hav both :P

[DrFeelgood04]

NATIONAL MARFANS FOUNDATION is a great organazation to get information on Marfans.

[clksportsgal]

you cant cure marfan syndrome they haven't found a cure yet.

[grandbleu1985]

hi ! I'm marfan and I have 22 years old. I'm french and I wish speak with other marfan.

[BoxxingTheStars]

Not sure if you took english class or not. It's - I have Marfans and I'm 22 years old. I'm french and I wish I could speak with other people who have Marfans.

[marisabia07]

i knew exactly what you were talking about

[MindWraith02]

what a coicidence, i just went to the doctors today to check out my heart

[sunflash1313]

There is a more rare syndrome that I have that is linked to Marfan Syndrome called Beals Syndrome, and they have alot of similarities.

[ChriXcore]

buckethead has marfan syndrome, and so do I

[xLilycakesx]

I hate this!! They always talk about the odd physical features that marfan patients might have!! but only like a quarter of people with marfans really have a an odd appearance! the rest are NORMAL! God, they make it look like people with marfans are completely deformed which ISNT the case! They only talk about physical aspects. Never about how the lungs may deflate, or how the lens in our eyes may be loose, or how our sinuses may be narrow which lead to low oxygen! were not all disproportional!

[JonnyDMartin]

It is the notable physical characteristics of Marfan syndrome that prompt people to go and get checked out. True, not all people with the disorder have all of the physical features, but most have at least some of them, and they should be paid attention to in order to get people diagnosed.

[muzikdude]

I have Marfan syndrome. I'm 15 ( 16 in Sept. ) and I had the operation to fix my aeorta (sp?) in May 06.

If anybody else that has marfans would like to share experiences or just talk about anything that they've encountered.. please talk to me on MSN =). Crash149.

[mwicked]

how do i tell my friend that he has marfan syndrome. he won't believe me. i've showed him this video and its obvious he has it.

[krispykritta]

tell him to get an ekg that would prolly tell him if he has it or not or atleast if he has heart rhythm problems tell him to get a checkup and to look for signs, and if he says he wont do it because he dosent think he has it tell him to go just to shut you up then

[1970sHippy]

I have marfan syndrome. thanks a bunch for the vid! gotta check out that website

[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 !

[alainnangel]

I had informed my brother that I thought that we have it. He is currently in the army and his first doctor thought that not to be true. Luckily, with other doctor's opinions it holds to be very true. Now he will be going to a very well known hospital to have his concave chest fixed and hopefully that will help with his constricted enlarged heart and his constricted lungs. Thank you for trying to get the word out.

[MindWraith02]

Really? How is he getting it fixed? My doctor said one of the only ways was to get some ribs broken and repositioned, which i dont like the sound of.

[alainnangel]

I believe many people are dying of Marfan's syndrome because not a lot of people know about it. I believe it could be fairly common, being that it is a genetic connective tissue disorder. Hopefully we can get the word out. And it is unfortunate about his death, hopefully your video will help and save lives.

[xLilycakesx]

w00tw00t marfan represent!!

:D

[hollywoodphony]

I have marfan syndrome and trust me: it's awesome!

[jzev]

I fear that I may have that. AHHHHHHHHHHHHH.....I don't want to die young!!

[Rebecca761]

Marfan's will not cause you to die young if treated. Most people who die of it did not know they had it. There are medications you can take to reduce your risk of aortic dissection, and it can be surgically repaired.

[krispykritta]

false, my cousin was younger then 30 when he had to b rushed in for surgery he would have died if he hadnt been treated, and he almost died twice wile being treated

[jzev]

..I don't have Marfan--I'm just weird-looking.(thank god) I have all the symptoms except the facial, chest, and connective tissue disorder. Whew! Didn't wanna go tits up before the age of 30.

[dajona22]

I have something along the lines of Marfan Syndrome. It's called Turner Sydrome and instead of growing too much I'm very underdeveloped.

[Rebecca761]

Marfan's patients do not grow too much. their bones are just longer.

[FEDAMALE]

very good advice, i got marfan syndrome

[mfctillidie]

Wow! I have Marfan Syndrome

[smiles809]

why is that funny and hawt aka hot?

[SweetestGoodbye4]

Haha thats hawt.