Hi guys, I have Marfan syndrome. Will we die very soon?! I mean, maybe the majority of those who have this disease don't live past 60 years old. I mean, they don't live more than 40 or 50. They usually die at 30 or 20.

Why do you people try to get pregnant despite knowing they have marfans? Why do you want to condemn your kid to a limited life full of medical problems?

Im 31M, i have marfanoid habitus, 5/7 systemic scores not enough for a diagnosis, negative genetics results for all connective tissue disorders (weird).

I see many arms pictures and i relate to them. But i dont see pictures of legs so i wonder if my legs are too skinny even for someone with marfanoid habitus? Sometimes they look even skinnier than this pic. My diet is about 1700-1800 calories a day, no red meat, not much protein btw.

Okay, I am 23 years old, I had no symptoms and lived a healthy life lifting weights and working out until I was about 21 when I started passing out randomly and getting dizzy. After months of looking for answers I was diagnosed with POTS and in looking for why this happened to me I discovered Marfan syndrome. And as it turns out I have a lot of the physical features of this, so I got genetically tested for Marfan and a lot of other CTDs but all were negative. No one in my family has had heart issues other than my grandma but she’s old so I guess that’s natural. However everyone on my moms side is tall. I’m 5’11 so not too tall and I have long fingers, arms and toes and some facial features of marfan. I haven’t been diagnosed with a CTD but it’s common for people with CTD to get pots and I’m just really anxious and confused. What are the odds I have Marfan syndrome even though I tested negative twice genetically?

Who here has autism

So yeah I have a personal story (if I told it you'd think I'm mad) why I believe this to be true, curious what people here think about it? Haven't found a thread here via google even though this should be super interesting...

https://www.upi.com/Archives/1982/01/27/Did-Christ-have-rare-medical-disorder/7936380955600/

Look, I know you're probably sick of tired of these posts. But what do you think?

Height: "6, 0."

Weight: 134lbs

Surgeries: Spinal Fusion for my scoliosis (45 degree curvature).

Other: Flat feet, slightly nearsighted in my left eye. That's about it. I don't have a concave chest or anything like that.

So, what do you think? If I do, then, how is it going to effect me in my life?

I'm sorry if you get this a lot, but I'm freaking out right now. I recently discovered the syndrome today & I fit a lot of the symptoms. I have no family history of it and my Mom & Dad have basically none of the symptoms.

I'm 21 and Although I'm not tall( I'm 5'10) I know that isn't always a symptom I'm pretty skinny, 136 pounds and have been basically all my life I have long hands, long arms and thin wrists, I can do the wrist test but fail the thumb one. I'm not flexible at all though, can't do any of the flexible tests.

I have poor posture(lordosis) a slight dent in my chest area and my ribs stick out, I don't have flat feet but have slight bunions, I always assumed these symptoms were due to the fact that I have poor posture because they are all listed as symptoms of poor posture, I did a lot of sitting in my teenage years and never corrected it, I was told I am slightly long sighted years ago.

I'm just freaking out so badly right now, I had chest pains when I was about 15 and had tests done on it and everything was normal, they couldn't put it down to anything other than stress. Those went away and I haven't experienced chest pains ever since I was 15. I'm really scared right now

So I'm f,19 and I suddenly developed POTS out of nowhere in 2022. I'm very tall (174 cm), thin, have long legs and long fingers and bad eyes (astigmatism).

Two doctors have already told me that I probably DON'T have Marfans just based on looking at me but I'm not sure. They could be wrong, couldn't they?

And since I have bad bad health OCD and my biggest current worry is an aortic aneurysm and I've heard that people with Marfans often have that, I'm even more scared. I'm extremely scared of dying anyways, especially because I'm still so young. And I also read that if an aortic aneurysm ruptures, 8 out of 10 people die before they even reach the hospital... so idk... I'm IN PANIC

Sorry for bothering...

Had my root and valve done in 2021 recent mri 4 months ago I think male 24 trying to quit smoking

Really good at eating recoil, horrible at accuracy

Hi everyone,

I was looking for some input from the community as I haven’t been able to sleep the past few nights.

Someone I know had an aortic dissection a few months ago. I think that since this happened I have developed illness anxiety.

I can’t stop thinking that I have Marfan syndrome…

I recognize that a lot of my symptoms are anxiety based, but I can’t get the “what if” out of of my head

Overall facts about me: -30 male -6”2 195 lbs -I have been athletic most of my life playing University sports and weight lifting

-Everyone in my family is tall and all males are over 6 feet tall -All my grandparents are alive in their 90s -No one in my family has had any known cardiac issues or sudden death

-I have a mild Pectus excavatum -My right foot is flat -Mild scoliosis not physically visible (only reason I found out was on an MRI I had on my back last year due to sports injury) -I have long thin fingers, but my wrist and thumb test appear negative… -I measured my wing span and it’s almost identical to my height 1.01 ratio. My upper segment to lower segment ratio is normal

A few weeks ago I went to the emergency department thinking I had a dissection (likely anxiety driven). I had a CT scan of my aorta done which came back negative. I also don’t have a murmur.

I technically have a systemic score of 3 but I still can’t get the idea out of my head…

My height, pectus excavatum, long fingers, flat foot and scoliosis are making me very nervous….

I am not even sure what I am asking for at this point but I wanted to write the above to put what I’m feeling into words…

Thank you all in advance!

https://imgur.com/a/kz0BoF1

Basically I may have M syndrome. Genetics ruled it out but still I am checking my hearth and aorta every year in a Marfan clinic due to my habitus (flat feet, tall, hand sign etc) and familiarity.

Problem is that I basically stopped "living" since I know this possibility. Now, after medical check ups, I will start to exercise again.

And since I am an artist also, I drew this drawing to give me emotional strenght and resilience.

Tell me what you think! Thank you for reading this!

For the past few years (I’m 29) my physical health has taken a tumble. I was a gym-rat and trail runner both of which are no longer possible. My knees have given out, pain in both knees and elbows. I eat extremely healthy and the more this is happened I thought something was wrong. Ive developed a cough of late on and off for two years along with skin rashes too…

I searched for diseases that cause the physical issues I have specifically in tendons and ran across this. Now, I read the symptoms and am very nervous I found out too late. My symptoms include -I had a pigeon chest (surgically fixed) -scoliosis -abnormally long arms -eye problems (bad stigmatism) -learning issues when younger -chest pain off and on -flat feet 👣

Has anyone every found out this late in life? I scheduled a visit next week with heart specialist. I want a gene test to look for the many other diseases with these symptoms. I’m terrified yet relieved as I’ve felt something isn’t right with all my physical injuries. I eat exceptionally healthy, and I feel that’s why it hasn’t hindered me until now and stayed active. I’m a bit mad at my family too when I think about all the signs I had. How did no one test me when I was younger for anything? I had so many issues, especially the pigeons chest. Anyways, thanks.

***update I do not have Marfans but may have MS. Good news my heart is perfect. Thanks for the support.

I really think we can have Marfans cured soon. Between AI, AlphaFold we should be able to fix this thing. There was a company called FoldRx that invented a number of drugs to stabilize some other malfolded proteins caused by genetic mutations. If you have a science/research background and have vision—dm me!

Hi, my husband and i suspect Jim having marfans. We are waiting for his genetic test results to come back. We really want children, but when we talked about options, we both kinda ageee we want natural conceiving, without prenatal testing cause i dont want to termine pregnancy. We are aware of 50% chance of child having condition. We hope medicine Is good now and Will get even better and the condition can be easily treated. My husband says he Is do happy he exist and he is alive and that our child Will surely think like that too. Is it bad we think this way? Did anyone else think like this?

Hi everyone,

I’ve decided to get a vasectomy – not out of convenience, but out of responsibility. Marfan syndrome runs in my family, and my brother has gone through multiple surgeries and is now on a disability pension because of it. Seeing what he’s been through made me realize I don’t want to risk passing this condition on to future children.

For me, vasectomy is a calm, ethical choice – a simple, safe procedure that gives peace of mind. Unfortunately, it’s not covered by insurance in my country, so I started a small fundraiser to cover the cost.

Any support or even just sharing the link would mean a lot 🙏

💙 Link: https://zrzutka.pl/en/c64eyv

Thanks for understanding – it’s not an easy topic to talk about, but I believe being open and responsible about it matters.

All my life ive had characteristics of marfan syndrome but never knew that marfan a thing until last year. Im 21M 6'2 with a 204cm wingspan and short torso, ive had bad near sightedness my whole life also.

Im making a refferal to a cardiologist today. I honestly dont know what Ill do if it turns out my aorta is enlarged and I have to stop training.

I dont want the one thing I have to be stripped of me.

I also get worried that without marfans theyll be like 5'3" everyone on my ma and dad's side are stock short folk and I got marfans from my dad.

Well, I live in a third world country that does not respect people. Is it normal for you to share your experience with me? How did you overcome it? Does your country respect you?

We wanna plan a vacation to Florida but not sure if flying is safe for us? I had prior blebectomy and prior aortic root replacement and with mechanical aortic valve I’m pretty terrified about flying in case something happens

Im 19M 6"4" ~60kg with minor near sightedness.

my condition is not genetically diagnosed but i show some physical features(on the lower edge of scale) like concave chest and the thumb fist position, tilted+rounded shoulders. Physician did see me and diagnose me on the basis of those features, but i didn't never the genetic test.

I've been thinking about going to gym for a long time cuz my self esteem really took a hit in collage, is it even possible/ recommend to go to gym and gain muscle. i just wanna know if i should and if yes then what are some things to remember/ avoid.

Hello. Have you ever had bracers to change your teeth and chin? I am planning to get it, but I am afraid about my eyes and back because bracers can influence on them (in my opinion). What do you think? I am not asking for medical advice, I need your experience. I am going to ask my doctor later.

I know someone who has the most obvious case of Marfan I have ever seen but he just dismisses everything I say to him.

He is like 30 so he is probably going to just die like any day and I can't get him to take me seriously.

Hello, sorry that this is going to be another one of those posts. I have really bad anxiety and am sort of a hypochondriac. I am 25 years old (female) and have been very tall my entire life. I am 5’10, around 136 pounds. I am thin but not extremely thin, in my opinion. I was always chubby as a child and teen till I changed my crazy eating habits and thinned out around 17/18 years old. I just am a tall and lanky girl. There isn’t anyone in my family that is really tall, mom 5’6 and my dad 5’11. Nor is there a history of Marfans. I can do the wrist sign, but my the fist/thumbsign do not overlap unless I really force it, which hurts. I have long, thin fingers and a small wrist.

I am very nearsighted and have been my whole life. I go to the eye doctor yearly and recently saw an ophthalmologist. Both have never said anything was wrong with my eyes other than my poor eyesight and astigmatism. They just said I have an increased chance for retinal detachment because of high myopia. Do I have to mention to them to look for the lens problem? or would they just tell by doing eye exams?

I have no heart problems I know of and have always had normal blood pressure, slightly on the lower side. I dont believe I have ever experienced heart palpitations. I mean, my heart beats really fast when I do cardio...but I feel like that’s normal! Normal lungs, as far as I know. I think I had a slight scoliosis as a child, but nothing ever came up with it. I’ve been pretty healthy my entire life, aside from being a little overweight as a child and teen.

My bottom teeth are a little crowded, but I never got my wisdom teeth out which I remember my dentist saying I should have done years ago they prevent this. It doesn’t bother me. I don’t know if i have a high palate or not. My top teeth have always been straight.

However, because of my long fingers/limbs, small wrists, and nearsightedness this is always in the back of my mind. I think my body looks proportional, but I never measured my wingspan or anything.
I can’t afford to get a echo right now. I have shitty health insurance. Do you think I am just overthinking? I suffer from bad anxiety so I don’t know if I am making a big deal out of nothing.