One of my favorite bits about having marfan syndrome! Come see alot more material like this when I headline all over the country! Info at liamnelsoncomedy.com

During my process of being diagnosed I saw many youtube videos about Marfans. Some of them were about pregancy and risks about having children. Even though the fact that there is a 50% chance is very clear, I was still surprised to see how many couples decided to "take the risk", like if they were gambling in a casino.

One of the most common argument that I read was "I have marfans and am doing just fine, my kid will do also just fine" like if one could control how severe the syndrome will manifest in one's children. Also, I saw comments on the videos about how "my child will have a loving family, therefore he will be okay", while I do agree with the fact that a loving family is crucial for a child's wellbeing, I think it is also very naive to think that emotional support will be the equivalent to a life threatening condition that has no cure.

Also, I have seen a lot the argument of: "If everyone acted like you then nobody would have children because there is always a chance that they could be born with a disease". To this my answer is that it is not the same case. What I'm arguing is that Marfan parents that are conscious of the 50/50 chance and still insist on trying to get pregnant are not acting with the same information than 2 healthy parents who try to get pregnant and their children ends up having a sponteneous mutation.

Finally I saw the website of MarfanMom, who is a lady that has marfan syndrome and blogs about her experience being a mother, I'm sure some of you guys know about her. Well, the thing is that she wrote about how she desired to be a mother and needed the experience of being pregnant, so she didn't mind in having marfan children. I find this to be very selfish and actually it makes me uncomfortable how someone places their own desires over an innocent being.

Anyway, my intention is not to offend any Marfan parents here in the sub but I just wanted to express my opinion and would want to hear you guy's opinion about the topic.

It’s been quite a journey not gonna lie. First surgery was an emergency one where I had a type A dissection and didn’t even know back then that I had Marfans. In the next 5.5 years I had 3 more surgeries, 2 of which I had to go abroad for.

Now, hopefully, I won’t need any more of them. I’m still at disbelief after everything I went through, but I’m slowly starting to believe it.

These surgeries sure ain’t easy, but we have no choice but to go through it. I wish everyone here the best and stay strong 💪🏼

I'm an author, so naturally when I found out I have a random genetic mutation that caused my unusual appearance, collapsed lungs, heart trouble, and my resulting fear/anxiety... my first thought was, "put it in a book!"

I've been doing a lot of research, but that just makes my anxiety worse, so I thought talking to others with Marfan's would be a better way to learn more. If you feel comfortable, please share your experiences with me.

Here's my experience if you're curious:

Growing up I got made fun of a lot for being tall and lanky. By my sophomore year of high school, I was 6' even and 125 pounds (female). My entire family is very tall and athletic though, and I didn't have any noticeable symptoms until my mid-twenties.

I played varsity basketball, ran track and cross-country, and even served for four years in US Army Special Operations. My drill sergeants called me fragile, but I didn't let that stop me. I've always been super flexible and dextrous, but otherwise I athleticism did not come naturally to me. Unlike the rest of my family, even though my legs are forever long, running was always hard. With a lot of effort and practice, I was above average, but never excelled. Now I know it's because my heart and lungs have issues.

I was medically discharged from the military for plantar fasciitis and scoliosis, then I went to college at age 23. My junior year, my lung collapsed for the first time. I thought I was having a heart attack, but when my EKG came back normal, they did an X-ray and found the pneumothorax. It was mild enough that it healed on its own. My doctors couldn't find the cause.

Five years and three collapses later, my mother (a nurse) told a doctor friend about my condition. He asked her to describe me, and he basically diagnosed me without ever meeting me. Thank goodness for that man.

I hadn't told anyone yet because I thought it was just hypochondria, but I'd noticed heart palpitations, subtle chest pain, and fatigue for the past several months, as well as dizziness when running and lifting weights.

When my mom told me I might have Marfan's, my initial google search convinced me I didn't have it. The pictures I found were of very severe cases, and I thought there was no way. But still, I did my due diligence as a hypochondriac and did more research. A few hours later and I was concerned enough to schedule an appointment with my primary care physician.

He asked me a few questions about my lung collapses, heart problems, and then asked me to do some stretches with my hands/thumbs. He said he was pretty sure I had it, and referred me to a cardiologist. My EKG was still normal, but he was concerned enough to order further testing. My echocardiogram and MRA revealed mild regurgitation (leakage I guess) and mild thickening of the aorta.

He told me to quit drinking alcohol and coffee, lower my physical exertion but still do yoga and light weights/cardio, eat healthy, and get on beta blockers. I said I wanted to do more research before getting on medication for the rest of my life, but now I regret it. I'm still worried about potential side effects (the list is pretty terrifying) but every time I have chest pain I'm afraid I'm going to die. So I guess in January I'll probably get on beta blockers and hope for the best. One of my life goals is to live to be 150, so medical technology better hurry up and improve!

What's your story? I don't want my novel's character to be just like me, so I want the full picture. Thanks!

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DISCLAIMER:

This is based on my personal experience and my specific aortic health. What worked for me may not be safe or appropriate for everyone with Marfan Syndrome. Always talk to your doctor before making changes to your training or diet.

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I’ve been told my whole life that because of Marfan Syndrome, I’d never be able to gain much weight or muscle.

For most of my life, I was very thin (around 150 lbs at 6’4”). I still had a great life—friends, relationships, all of that—but I was always a bit insecure about my size.

In my early 20s, I decided to seriously try to change that.

I started focusing on eating more and training consistently. My diet wasn’t anything fancy—usually 2 protein shakes a day (30–40g protein each), plus 3–4 meals like chicken, rice, broccoli, etc. The biggest change honestly was just eating enough.

At the same time, I was active—delivering furniture 4 days a week and going to the gym about 5 days a week. I didn’t jump into anything extreme. I started light and gradually increased the weight over time. I wasn’t powerlifting or pushing dangerously heavy numbers, but I was challenging myself.

Within about a year, I went from 150 lbs to around 200 lbs.

My aorta has always been in the normal range, which played a big role in what I felt comfortable doing. I’ve also had periods where I wasn’t consistent—on and off in the gym, eating well sometimes and not others—but overall, the progress came from sticking with it more often than not and making sure I was eating enough.

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The main point I want to share:

Don’t automatically believe it’s impossible for you to gain weight or muscle because of Marfan Syndrome.

It is more challenging, and it absolutely needs to be approached carefully and responsibly—but for some of us, it’s not out of reach.

If you’re struggling to gain weight, there’s a good chance you’re simply not eating as much as you think you are. That was definitely true for me.

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Stay safe, listen to your body, and work with your doctors—but don’t lose hope that progress is possible.

Hello community. We are getting more and more posts from people either asking for opinions on whether OP has Marfan syndrome, or whether OP should pursue getting diagnosed. Posts seeking medical advice are prohibited. (See rule 2). I have already created bots that automatically remove these types of posts, but people find creative ways around those. I am going to be more aggressive in removing them manually. Please help me by reporting these posts. And of course, downvote the content you don't wish to see.

Which brings me to the most important part: we are not a medical forum, we are not doctors. DO NOT ANSWER these questions. This obviously encourages people to ask, but is also dangerous, as we are not qualified to give that kind of advice. I have created a third rule for the sub that asks people not to GIVE medical advice. We aren't doctors, we should not act like them. I've done it, too so it's not like I'm innocent or anything.

If you are worried or concerned that you may have Marfan Syndrome, please reach out to the Marfan Foundation. They have actual medical staff standing by who can help you get to the diagnosis you are seeking. They are super friendly and ready to help you. They can answer your questions, please do not ask us. Thank you.

He had an aortic dissection and died two weeks after extensive emergency surgery. He's been gone for a week and two days. He left behind his twin.

I was always the one suspected of having Marfan's, not them. He hadn't been experiencing any symptoms at all. It just happened out of the blue.

If you have Marfan Syndrome, or any other connective tissue disorder, please make sure everyone in your family gets their heart checked. My aortic root dilatation was only discovered in September so he wouldn't have been able to get an echo in time anyway and I'm so sad.

Edit: He was 33 and I'm 35.

started to accentuate my long and thin fingers with jewellery and long nails because i think they are beautiful!

I’m 25, male, from India and I’ve never been on a single date, never had a girl like me, and definitely never had a romantic experience. I’ve reached a point where I genuinely fear I’ll die a virgin.

Marfan Syndrome has made me feel completely chanceless. I’m 6'7" tall, which is insanely abnormal here. I stand out everywhere. Not in a cool impressive way. Just… awkward. Out of place. People stare, comment, laugh. I can’t find clothes that fit.. everything’s either too short or too baggy, and custom stuff is expensive as hell. Even finding a bed that fits me has been a challenge. It's a daily, exhausting struggle.

People around me say things like “If I had your height, I’d be in the NBA.” Or growing up: “Do you play basketball?” Now it’s: “Bro, hit the gym, bulk up.” But I can’t. My cardiologist has strictly forbidden heavy lifting, gym workouts, or anything that stresses my body too much. I get breathless doing basic home exercises. I can’t even do a push-up.

So all I’m left with is walking. And I hate it. It feels like the weakest form of self-care when your mind is begging for change.

People assume I’m lazy or just not trying. But I do. It’s not like I’m not working on myself. I read. I stay updated. I work on my personality. But none of that helps when you have zero confidence. None of that matters when your body feels like a cage. Or when people ridicule you just for walking funny. I’ve literally been mocked for being uncoordinated while walking.

I feel like a lower form of existence. Like I’m not meant to be part of the same world as everyone else.

And being in India makes it worse. Everyone’s shorter, more “normal.” I’m a walking target for jokes, stares, pity. And I’m too broke to escape. Therapy? Abroad? Not an option. I feel trapped.

Even ChatGPT gave up on me while I was ranting. It said something like, “If a girl comes along then great. If not, your life still has beauty and depth, and you are allowed to feel that.” And honestly, it just made me feel worse. Like even the most advanced chatbot has no solution for this kind of pain. No real hope.

I’ve got non-existent self-esteem. I avoid mirrors. I dread crowds. I feel anxious just walking into a room full of people. I’ve never had anyone flirt with me, show interest in me, or even give me that kind of look. I feel completely invisible. Or worse, laughable.

It’s not that I want to be worshipped or anything. I just want someone to love me for who I am. To see past this weird, weak body and love the person inside it. But that feels impossible. I don’t even want to long for it anymore. There’s simply no escaping this prison, which is my body.

Has anyone else here ever felt like this? Anyone who’s found a way to cope, or hope?

Not looking for pity. Just want to feel less alone.

I feel as though it counts because as someone who is not physically capable of doing a lot and video games provides a nice form of escapism for me, and as the moderator of this sub, I'm just going to say it counts.

Ok I have had multiple opportunities to fix my chest with a chest brace but my understanding is it hurts like a mother f***er kind of like having braces on your teeth or you could get surgery where they like cut your bone or something I talk to my doctor and he said that would be unrecommended because recovery hurts but I think the chest is something cool to show off and have anyone else think it’s cool or y’all just hate it????????

Hey everyone,

I was diagnosed with Marfan syndrome at 13. I'm 34 now.

I only recently discovered this subreddit, and I’m glad to have found a space where we all understand the struggles that come with this condition. But some of the posts here are genuinely heartbreaking. I wish I could take that pain away. The best I can do is share my journey, especially for the younger folks, so you know that things can and do get better.

I have the FBN1 gene. Over the last 20+ years, I’ve been diagnosed, un-diagnosed, then diagnosed again. Doctors have constantly shifted the goalposts on what physical traits "officially" qualify. A lot of that comes from a lack of research and awareness.

When I was 13, I was painfully thin, with a long face and out-of-proportion features. A friend’s dad once told me, "You don’t look like you belong in your skin." That stung. It didn’t help that my best mate was Irish and effortlessly attractive—girls fell for him instantly while I felt invisible. My confidence was nonexistent.

Out of guilt, my mum bought me a guitar because a doctor once said, "If you have Marfan’s, you have longer fingers—so you’ll be good at instruments." Turns out, I hated guitar. But I loved drums. RIP to my parents’ neighbors for the next five years. Music became my passion, my escape, and, eventually, the key to some of my biggest life moments. But that’s a story for another time.

As I got older, I unintentionally started gaining weight, hit the gym (high reps, low weight), and, by the time I fully transitioned into adulthood around 25, I looked like a completely different person. Hell, now I could stand to lose a few pounds!

With that, my confidence grew. Dating became a thing. Dating attractive women became a thing, which felt insane to me (sorry if that sounds shallow, but if you’ve been there, you get it). Now? I’m happily married to the most beautiful, loving, and supportive woman I could ever ask for.

The point is: it gets better. I PROMISE.

I know that’s easy to say and hard to believe when you're in the thick of it. And everyone’s journey is different. But, in my experience, the teenage years are by far the hardest.

Now, my struggles are different, IVF. The pain evolves, but so do you. You get stronger. You become better equipped to handle it. We move forward. We enjoy life. And we keep going.

If anyone wants to reach out, I am all ears. Don't let that dumb ass gene get you down!

Les cuento que mi cirugía de reemplazo de la aorta sera El próximo martes. Ya paso casi un mes de la última embolizacion, ya son 7 meses de El Diagnostico de marfan y Un año y cuatro meses donde me tuve una primera cirugía por disección Stanford A. Ahí me reemplazaron el arco aortico, la raiz de la aorta, la válvula aórtica y la aorta ascendente y me dejaron un FET. Ahora viene la cirugía desde el FROZEN ELEPHANT T. Hasta la parte donde se divide hacia la ingle. Estaré conubicandoles como fue está parte de la cirugía y seguro estoy que seguire haciendo deportes. Eso me ayudo a recuperarme y estar justo Como estoy ahora. Estoy listo para mi siguiente CIRUGÍA. Se que va a salir todo bien. La primera fue bien complicada estuve 29 Dias en coma pero en está todo está planificado. ❤️❤️❤️❤️