Added: 4 years ago
From: drmdk
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  • I am only 15 years old, and my marfan cousin has become a father-figure to me, by making me his sole responsibility. I love him so much. I hope God gives him long enough time with us here on earth.

  • His eyeballs shake like gel, he sees floaters in his vision, he has a prolapsed heart vale, and he weighs no more than 75 pounds at 5'7 tall.  He's a hero: He drives like a pro, nobody can beat him on video games, especially basketball video games, he's an excellent writer, a self-taught computer tech.

  • My cousin, who currently takes care of me, has the Marfan syndrome severely. He has a very deep hole in his chest, his spine resembles that of the letter "S", his finger joints are easily dislocated, and so his knee joints.

  • Ok to all of you who think you have marfans syndrom just beacuse you can reach you fingures around your wrist does NOT mean you have it! You might just have long fringures or samll wrists. I have had marfans syndrom my whole life. I have had surgary almost everywhere. If you have questions please ask me before you assume your dieing lo thx :Dl

  • @PurpleTreesAtMidnite well can you pm me? i have a few questions and just off the bat...my thumb can touch my wrist my hands are big im about 6'1 i have pectus excavatum and im farsighted...and the drs told me theres something wrong with my heart

  • @Duvalinson63 Email me kit_cat_bar@live.com

  • Damn I think I have marfans syndrome my wrists my fingers :'( is this bad???

  • Abraham Lincoln had Marfan's.

    My mom is actually diagnosed as having Marfan's.

    Everyone on my mom's side of my family(or almost all) die of cardiac arrest.

    I have long finger, toes, I'm quite tall, I can do both of the signs, I'm near-sighted, AND I have scoliosis.

    Oh Shit, I have Marfan's. :(

  • @brian472 your doctor might think it's something else besides marfan, thats the only thing i can think of.

  • Just found out I have this. Any advice?

  • @fightingBRITISH Go to the National Marfan Syndrome website. It's a great resource, and you can connect with others who have Marfans. You can get advice from people who are going through it and have been through it.

  • @fightingBRITISH Take care of your heart.

    That's what you need to worry about.

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

  • I have marfan syndrome anyone wanna talk to a 26 year old hit me up. I have the hign end side of this crap. I got a bad heart long ass arms deep chest all the stuff you look for.

  • i have marfans syndrome ;) im 16 i have long fingers and feet too and im thin too but i dont give a shit if people dont like the way i look dont look at me

  • im assuming everyone here has marfans this is why you came here...well let me tell you....its a form of disability so id advise you to collect SSI as payments, sit back....and do something fun till you die (thats if you ever do) as long as your government thinks you have this syndrome, youll get paid... i know i have for over 10 + years, but ive already suffered a retna detachment, oh well... life lives on....back to porno, then sleep...then more porno again

  • @FunnyLooking77 what you mean SSI? How do I do this...?

  • I suspect that i have marfan syndrome. For some reason, i keep refusing to believe that i have this disease, but i do have all the symptoms. My chest, wrists, long fingers, are just like what he said in the video. i managed to change my shape a little bit by working out a lot, play basketball, all kinds of workouts because i didnt want to be this way, is there a way to get rid of this curse? Should I go to a doctor? My heart seems fine, but i am just not sure anymore

  • @4thKyuubi I have some of the symptoms to, but I've been getting blood tests and I've gone to specialists recently and apparently I don't have it. One of the bigger signs of the syndrome is if your arm span is bigger then your actual height.

  • @4thKyuubi Make an Appt. with your Doctor Very Soon!

  • thank you

  • damn, i can all those finger things! i can easily fold my thumb on the back of my hand, overlap my fingers around my wrist and get my thumb to stick out on the other side of my hand... mm shit, i am going to measure myself

  • It can be serious if untreated or if there are complications

  • is this a serious disease?

  • @xXMaDnEsSXx5469 Yeah, can be very life threatening.

  • @xXMaDnEsSXx5469 Of cause it is

  • ok i have every sign except flat foot and scoliosis

  • Do Marfan's really have super long Johnsons or is that just myth?

  • @turkeyishealthy I have Marfan's and my member is 7 inches flaccid.

  • @turkeyishealthy Just a myth. i have this condition and my Johnson is fairly normal.

    The Johnson s not a limb ie does not have a bone (not part of skeletan).

  • I'm 48 and have had 6 surgeries starting age 10. My dad checked out @46 but these days heroic surgeries pull some people through to 60. The variability is large, from mild to moderate to severe and even a neonatal form where the babies barely live a month. Fortunately, I squeezed in a medical scientist degree and had a good career so I get very good care. The pain and the quality of life is sometimes unbearable. Living with heart failure ain't fun. I live one day at a time.

  • Not true. Husband has had two heart surgeries and is about to be 50! Good News!

  • My son is 13 and just developed a really bad pectus cardinatum, lost weight rapidly and looks anorexic. He has always had what I thought was rheumatic pain in back and legs and I noticed from birth a high palate in his mouth. he says he has heartburn and asks for antacid tablets.

    Is it normal to be fatigued? He 's sleeping all the time and misses school due to tiredness. I have been to doctor loads of times who just says its ok the chest happens to lots of teen boys. Should I go to hospital?

  • Yes, go to a specialist. Fatigue can be a sign of valve problems. This can eventually strain the heart over time and cause some degree of heart failure. An echocardiography (simple, painless, non invasive test) should give the required information. Better to be safe and rule things out or in.

  • Thanks for your reply.

    I will get him checked out to be on the safe side.

  • tell this to my parents....

  • Marfan Syndrome PWNS!!!!!

  • i have the wrist sign, the thumb sign, the wingspan, i am too tall for my age, im 1,96m and im 15......i have long feet and fingers......sooo......my mother had heart problems as a girl.....ohh.. and i also have pectus excavatum.........

  • @MigiAssassin you should be followed closer with a cardiologist and an ophthalmologist from time to time

    good luck

  • I have it 2!

  • I was diagnosed with marfan's, I only have the long wingspan. I got X-Rays on my back later on and found that I had a crushed T1 in my neck... Still paying for the bills, doctors suck

  • marfans is considered a multy system disease like multiple schlerosis and as such qualifies for social security disability or medicaid. That should help pay for your medical test that a marfans patient must get or they are at risk of sudden death and life long pain.

  • How tall can somebody with Marfan's Syndrome get? I've read the tallest person with this syndrome is Dave Rasmussen from the documentary Gigantism. He was about 7,4". However, pituitary giants can get much, much taller than that.

  • hmm im not exactly tall but im rather skinny, i can do the wrist sign but NOT the thumb sign. My legs are kinda long but im sure my wing span is not taller than my hight. I havent got flat foot and my eyes work perfectly. Should i still get it checked out? please get back to me someone.

  • Oh and as far as im aware my parents havent got it. im 19, used to run many miles in cross country even with Asthma and never experienced any serious problems with my breathing, when i did it was because of my asthma.

    So far all my life i have been able to do what ever i want (phyically) e.g. playing football, running, drinking/partying and my heart and lungs seem to be getting on fine as ive had no pain in those areas. Im really worried as ive herd people with this syndrone only live to 40!

  • I heard joey ramone had this disease

  • whats diffrence betwen ectomorph and Marfan's Syndrome ?

  • YOu would not think I was Marfans as I am very overweight, not long arms or fingers but I have dislocated lens and scoliosis. My daughter doesn't have the disease but she has traits like long fingers, slight pigeon chest etc. Weird eh

  • wow that is strange. I thought Marfans are skinny.

  • I am not so sure about the span just being longer than the height. I would say the arm span should be significantly longer than the height for Marfan's to be considered. My arm span is 2.5 inches longer than my height and I know many many people are the same. In Marfan's patients, the arm span is usually at least 10% longer than their height.

  • I am 5,9" 140 lb and my wingspan is 6,2" but I don't have Marfan's. btw, I am not sure if I know anyone who's armspan is 10% greater than their height.

  • i learned this syndrome from abraham lincoln (he had it)

  • correct me if im wrong but i think scientists looked in to it further and found out that he diddent

  • Both my daughter and my husband died of complicatons from Marfans. I think that one of the names in our family cemetary was one of the names In Abe Lincolns family.

  • oh okk...lol... thought i heard it somewhere.... i have marfan!.... woo..... suks...lol

  • I believe medicine is more expert now than it was then. My daughter passed in 1994 and my husband in 1972 but I believe they have made significant treatments since then. It is most importent to have a good doctor.

  • yh... i go to dr mullen at the royal brompton hospital every 6 months

  • verotextech48: yes, gender does not matter in this hereditary disease.

    My diagnose was when I was 8. I was operated in age of 16 (not so common that young). Is there any other marfans with scar made early? Hope you understand my english, I`m not so sure about that spelling...

  • i was diagnosed with marfans at the age of 12 beta blockers no but cozar or lazartan does with the connective tissue for me it have been working great telmisartan is more concentrated more likely for those with a mild or barely high form

  • I am a 24 year old boy from a tiny island in the mediterranean called Malta. I was diagnnosed with marfan since I was a baby

    Unfortunately there is no permanent cure for this disease but for those that they have heard that many of the people with marf\an have a shorter lifespam I can say that we can also live till 70 or 80 years if age.

    What I hate in this syndrome is that for many people we are considered as total mutants and that hurts me alot because apart from marfan I am a normal boy

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

  • can girls get this disease?

  • i have been diagnosed with Marfans, a distant family member has similar symptoms, he is taller than me by a few inches, and has stretchmarks. I don't have dilitation of the aorta, I have that 'wrist sign' but not the 'thumb sign', the high arched palate. I think I;ve got the dural ectasia but no lens symptoms. Is there any Drs on here?

    What is the blood test, does it look at chromosome 15? or does it measure levels of TGFBeta

    what beta blocker do people take and what are therequirement

  • yeah the stretch marks suck,it looks like you into heavy bondage which some of my friends thought when they saw my back

  • All Marfan's don't show all the features. Also, the variation in severity is large. (see my post above)

    The diagnosis is still a clinical one, as blood tests by themselves are not definitive. The drug regimen chosen depends on many factors including your ability to tolerate side effects, other drugs you take etc. Typically, Losartan or Telmisartan 25/50 mg per day, sometimes combined with 25/50mg of Metoprolol to control some rhythm problems if any. Your Doc. will decide the best one for you.

  • i have marfan too..iam 17...i was just diagnosed last year...i have aorta dilation..and i take beta blocker..i was just asking if there was any permanent cure for aoarta dilation...actually i am a table tennis player and i read that its moderately strenous to me to practise table tennis...but i still practise it...and i wonder if there was any cure for this aorta dilation...thnxs

  • Angiotensin receptor blockers HALT aortic diliation. For some reason this is not getting the press it deserves..

    Forget the beta blocker it wont do jack. The ARB is what will do the trick...

    Telmisartan is the best one..cozaar is one of the weaker ones but the most used

  • cozaar33: There is some variability depending on the studies. Long term data on a large population are still being collected. It is worth though to get on some ARBs as the risk is low. Annual (or 6 monthly) check ups are a must as well.

  • ur totally marfan!!!

    my best friend has it

  • I am a boxer who had aortic diliation. I got on a good dose of Angiotensin Receptor Blockers (Micardis) and it completely REVERSED my dilation !!!

    These are miricale drugs !!! Get on them and dont take no for an answer.

  • Thanks For Replying, I Think I Have About 2/3 Of Those Above, Im 13 At The Moment, And I Was Diagnosed Last Year, Me And My Mum Were Very Curious About It Thank You For Answering

  • i have marfan too, damn, how expensive the operation is, dont u know??

    hmm ):

  • I've been told i have marfan's syndrome, but I've never had a marfan's specialist look at me (I don't think there's any in my city). I have the thumb and wrist sign, high palate, the eye thing (my optomotrist picked it up), long arms, super flexy joints...but i'm actually very average in height and skinnyness (5ft six, 120pounds)...I'd really want a proper diagnosis, things like this help tho...thanks!

  • Not all Marfan's patients are tall. I have marfan's i'm 6'6 my brother also has it he is 6'3. However i have a friend in louisville kentucky who has it. He however is like 5'5 he's had rods placed in his back. Not all marfan's patients are tall in stature. I have to say being tall isn't all it's cracked up to be. I can't count how many times my head has met low ceiling fans

  • How about somebody 7,3" with a 8,1" wingspan?

  • my cousin justin is 7'3 i don't know his wingspan

  • you definately got it.

  • There is a blood test for Marfan's Syndrome. I don't know much...or how expensive. The E.R. doctor told me I should visit my family doctor, which she will order the blood drawned and be sent to the lab that examines genetic defect.

  • Very cool, and informative video DrMDK.

    I'm 16, living in Ontario, Canada, and I just thought it was cool seeing Marfan videos on YouTube. Have you ever met any people with Marfans?... Feel free to private message if you think we could chat it up =)

    -Ryan

  • hi i've always wanted to help marfans patients especially females considering pregnancy. i have marfans and am currently 14 weeks pregnant. to speak to others would be fab. this is by far one of the best videos on here

  • thank you for telling me more about this syndrome

    i have a Marphans habitus and i can do all those hand things you done on there please could you explain marfans habitus for me please?

    thank you

  • Very similar to Marfan's syndrome but there are problems with the digestive tract especially the intestintial tract is prone to infections because of some reason I don't know of. Less severe aorta problems but intestintial putrictication is still pretty severe.

  • Fankoo

  • hi! thanks for talking about marfan's syndrome.. not many people know about it. Theres one thing though: with marfans syndrome also comes lung problems, as well as the other problems you talked about, which means that people with marfans have difficulty breathing, and may have collapsed lungs.. thats all!

    thanks for the video!

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