Comments on: Marfan Syndrome Pictures, Symptoms, Treatment and Life Expectancy

By: Judy R Gatewood

Judy R Gatewood — Mon, 20 May 2019 20:34:21 +0000

In reply to Judy R Gatewood.That should have been President Lincoln.

By: Judy R Gatewood

Judy R Gatewood — Mon, 20 May 2019 20:29:24 +0000

My ex husband, his mother, his sister and his brother all suffered from Marfans, Sister bled out on operating table when her aorta valve was being replaced. ex, his brother and their mother lived to be about 55 when heart gave out. My youngest son has it. He has had 3 open heart surgeries, 2 aorta and 1 mitral, has eye problems and 7 degree spine curve. His son and grandson are being tested to see if they suffer from this. No outward signs. Been reading about MEN2b and there are many similar symptoms between these two. President might of had Marfans and or MEN2b.

By: Emily

Emily — Wed, 22 Nov 2017 11:18:15 +0000

In reply to maria.

Hi Maria, I am very interested in your family history and wonder if you could answer some questions that might help with mine. My son is waiting for an echocardiogram for suspected Marfans. He has a lot of classic signs, but not severe (he’s 14 and quite athletic). My question is, can it be so mild that there are very few symptoms but still be passed down? My dad has pectus excavatum, bendy thumbs, has had a hernia and recently had a life-threatening blood infection, but has otherwise been very healthy (he just turned ninety, and is quite short). I also have pectus excavatum and bendy thumbs, but have never had any health issues (I’m quite short too, and 39). My son does not have pectus excavatum or bendy thumbs, but has very flat feet, long arms, scoliosis and kyphosis, a heart murmur, and very loose ligaments (his collar bone just dislocated for no reason). In researching this I just learned that a niece also has some connective tissue disease (she didn’t say what it was), and a nephew has a heart murmur, but none of us had ever heard of Marfan before, and I don’t know of anyone who has died early. Has anyone in your family who is confirmed with Marfan had such mild symptoms as me and my dad? Would it be worth doing the genetic testing? It’s so expensive, but if it effects many in my family and could be so serious I don;t want to ignore it!
Thank you.

By: Cindy Pyl

Cindy Pyl — Sun, 05 Apr 2015 22:27:18 +0000

My stepmom has marfan’s & I think she possibly may be the oldest living person with it @ 841/2. It has not been without it’s challenges. She has had heart valve replacement, cataract surgery in both eyes, almost died with a heart anuerism & many skeletal problems. She is wheelchair bound & can’t stand up though. She has beat the odds many times now & kept on going.
Unfortunately, my nephew that just turned 40 in Feb. had a brain anuerism, related to the marfans, & has had all kinds of problems since that the marfans has caused complications with, & now a brain stem stroke connected to it. He did have his aorta repaired at 28, but the only issues since then until now, have been skeletal.

By: Connie Young

Connie Young — Sat, 26 May 2012 04:57:08 +0000

If you think you have marfan syndrome PLEASE get more then one opinion because my husband has it. He is 38 now and up until now doctors have told him it was nothing and that “if” his heart complications were a emergency then they would fix it. Don’t give up, he has had 8 relatives to die from this anywhere from 1 month old to 51 being the oldest. Not to mention more that we are learning about now. The only dr that has helped us up to this point is a Genetic Specialist that we took my daughter to and when they saw him and heard his family history was very interested in helping him and putting us on the right track to “temporarily” fix some of his heart,eye,lung and pain issues. Whatever you do don’t stop at one opinion because alot of doctors don’t even understand this syndrome and they might try to help but sometimes miss the big issues an that can be fatal.

By: chris butler

chris butler — Mon, 23 Apr 2012 22:32:21 +0000

i have marfans syndrome and dont get checked that often just when am not well my chest sinks in i am 6 ft 2 have the high pallet and always get out of breath is there an opperation to corect a dented chest if so what is it

By: Kaitlyn

Kaitlyn — Fri, 16 Mar 2012 00:09:03 +0000

Hey i’m Kaitlyn XD i’m definatly not your average teen but the reason i am on this site is for a school project and i may have marfan syndrome (says my scoliosis doctor or orthopedic doc) but from what i have read i am pretty convinced i do have it which scares me because i’m very athletic and love to play sports and be outdoors if i do end up haveing marfans and have to quit all sports my world will come crashing down and make a mess that not even my mom will beable to clean… help me!

By: Collin Warren

Collin Warren — Thu, 18 Aug 2011 05:02:28 +0000

Hey! 🙂 My name is Collin,but that’s not important, I’ve recently regained my interest in Marfan syndrome…. I studied it dispassionately at 10 but that was quite a while ago and I’ve honestly forgotten most of the prevalent information, and so my presence here. Having reviewed the symptoms I think there is a good possibility I may be affected with Marfan syndrome… a mild form. Family history, while none of my relatives have exhibited obvious signs of Marfan, my grandfather has heart problems that required surgery and a replacement heart valve, as well as cataracts and partial blindness in one eye, my father sometimes notes that his heart will skip a beat every now and again for seemingly no reason, (it is also noteworthy to mention that my mom is nearly 5’11” my sister is 5’11” at twelve with moderate scoliosis requiring surgery and my paternal cousin also suffers from scoliosis.) me and my elder brother and I both are tall with long thin arms and fingers that are abnormally flexible, (more so my brother than I for the thinness and flexibility although I can bend the fingers in either hand backwards to a slightly less than 70 degree angle if I try.) I myself have long fingers (I can nearly touch my wrists with my finger tips…) and slightly diminished dexterity, and when I exert myself (specifically in running) I often find myself ridiculously out of breath for about two minutes, once or twice to the point where I even got dizzy and light headed. I have no signs of scoliosis or protruding sternum and I do not believe my palate is higher than normal, however I do suffer from mild back pain in both the spine and muscle even when I have not overexerted myself, and this is pretty consistent but largely ignored when I say something about it, due to the fact I’m still growing and show no signs of scoliosis, my back has stretch marks that have actually been mistaken as scratches by about four doctors (one even asked me if I’d been physically abused, I think.) My vision is actually better than most though I am a bit photosensitive and have slight astigmatism according to my optician. My recent EKG showed no abnormalities (or if they did the doctors didn’t say anything) so that’s a blessing, at least. I also occasionally have unusual feelings in my chest, (in what I’m assuming is the heart area) that didn’t last. Also my feet (and sometimes hands) are almost constantly cold even to the point of discomfort, and I am under blankets at 70 degrees, signs of poor circulation. I also may suffer from sleep apnea, although I do not believe this has been confirmed by a physician. All are possible signs of Marfanism. Oh since I appear to have neglected to mention it, I am 6’2″ and still growing. And it wouldn’t surprise me that I inheirited a genetic condition as several others run in the family as well, Autism, thyroid disease, scoliosis, and a rare genetic condition, whose name I cannot remember, that killed two of my cousins. However, I can’t really be certain if I do in fact have Marfanism as all the signs aren’t particularly conclusive and especially because there doesn’t appear to be anything wrong with my heart. Plus I have inherited at least one of the other genetic conditions I mentioned… confirmed with diagnosis. I guess what I’m looking for here is some sort of assurance that it may or may not actually be this condition, because I’ve always been called a hypochondriac, but it’s a very hard one to get a concrete answer on… I dunno, I guess it doesn’t matter, because even if I happen to be affected by it, I’ll just have to go to a doctor for a check up every now and then, my life wouldn’t be too terribly changed… Sorry if you feel like I wasted your time, Au revoir.

By: ana marie manzon

ana marie manzon — Fri, 12 Aug 2011 15:03:29 +0000

my son has been diagnosed with marfan syndrome just this week,and i was very very lonely i cant accept it. me and my husband dont have that desease. he had a displacement of lense in both eyes. and the doctor requested me to have him tested for ecg. i hope he dont have problem in heart coz he is a very active boy.even he had a problem in eyes he can play til night .and can run and run

By: gerry

gerry — Fri, 12 Aug 2011 13:45:58 +0000

My son age 16, is to be refered to a geneticist-he has agressive scaring on his back, hyperbobility, pretruding chest, he is not exceptionally tall-he is 5ft 11 so far,but his span exceeds his height, he has flat feet,all of which I understand are symptoms-to date he has no sight or heart problems-these will apparently be investigated-as a parent I am scared of what the future holds and dread confirmation-this will devistate him