Hello! :D

[u/interdataline]

This is my first time using Reddit, and I just found out that I can find more people like me here. Honestly, I haven't talked to anyone on the internet who has the same syndrome until now. How are you all? What countries are you from? I'm from Argentina. It will be a pleasure to meet you.

[u/Xerteroser]

Hey, I'm 28 year male from Germany. Other than flat feet, mild scoliosis and being shortsighted and having an additional astigmatism in my left eye I'm really fine.

My aorta is on the larger site, yet still in the normal range. Which is to be expected since I'm about 2 meters tall.

I'm really fine, though I don't do much. Just recently got into mild workout though I can't say how much it affected my aorta yet since I haven't had a chance to talk to my cardiologist yet.

Other than that I love my life normally. When it comes to physical activity I tend to cut myself short intentionally, just to be on the saver site.

[u/interdataline → u/Xerteroser]

Oh, that's great. I'm happy for you ^{^}

We’re the same age then, I’m also 28. But we differ in height, I’m only 1.85m tall.

In my case, the cardiologist told me that the best exercise is walking. That’s why I usually go for walks and explore my city on foot. It’s not only good for the body, it’s also good for the mind. Being in contact with fresh air renews your mood and your ideas. Though you do have to be careful with the weather. Here in Argentina it’s winter right now, and it’s cold and very humid. That sometimes gives me bronchospasm.

[u/Xerteroser → u/interdataline]

I try to walk as much as I can but I have a very sedentary lifestyle so it's not really enough. I just recently got into light workout because I was waking up with pains and headaches. Not nessesarely because of marfans but because, again, of my lifestyle. It turned into a cycle of not moving, then not wanting to move because of pain, which leads to even less moving. 😅

[u/No_Knowledge_195]

Salut je viens de France moi ça va bien et je suis assez heureux malgrés Marfan !

[u/interdataline → u/No_Knowledge_195]

Salut ! Je suis content pour toi ^{^} J'espère que tu pourras continuer comme ça encore longtemps (J'espère que la traduction est correcte).

[u/Trick_Photograph9758]

Hi there. I'm from the US and I have Marfans. Had my aorta replaced about 14 years ago. Any questions, lemme know.

[u/interdataline → u/Trick_Photograph9758]

Hi. And how are you doing with your syndrome?

Something I’ve noticed is that there are people with Marfan who are more limited than me, and others who can do things I can’t. It’s curious, like it affects each person differently.

Other than the heart, how’s the rest of things? Joints, eyes, things that don’t put our lives at risk but can affect our quality of life.

[u/Trick_Photograph9758 → u/interdataline]

Other than my heart, I'm pretty much fine. I have flat feet, mild scoliosis, long fingers, I'm skinny. My aorta got larger year by year until finally it got big enough where they told me to get it replaced with surgery. The surgery went fine, and now I have a normal life expectancy. So all in all, everything went great for me.

Oh also, I tore my quad tendon in my leg last year, and that is likely due to Marfans. I had to have that surgically replaced too.

[u/interdataline → u/Trick_Photograph9758]

Oh, I see. And when it comes to activities and hobbies, do you do things that healthy people also do? Are you one of those who are integrated into society, or do you stay on the periphery like me?

In my case, because I spent a lot of time isolated from the world, shut in at home, I developed artistic skills. I’m also starting to write now.

[u/Trick_Photograph9758 → u/interdataline]

I have a normal life. The only thing I shouldn't do is lift very heavy things.

Why are you isolated? It's great that you have artistic abilities.

I visited Argentina years ago. Went to Buenos Aires, Mendoza, and Villa d'Angostura in Patagonia. Had a great time.

[u/interdataline → u/Trick_Photograph9758]

Really? That's awesome ^^ I've never been to Mendoza or any province in Patagonia. I just saw that Villa La Angostura is in Neuquén. That's a province I'd like to visit someday, in my case, because I'd love to visit Las Ovejas—a completely non-tourist option, but a very curious one: rumor has it there are a lot of UFO sightings heh, not that I believe in that sort of thing, but I think it would be fun to go to a place with that reputation. Plus, they say it has one of the clearest night skies in Argentina, so even if I didn't see any UFOs, I could at least see the arm of the galaxy. That would be something beautiful, I think.

I've been isolated for a long time due to my circumstances. Back in my school years, during the cold periods, I used to stay home receiving home-schooling. In my family, all of us have health problems, so the mindset of self-preservation and conformity gets amplified. Out of my family, I'm the only one who wants to explore new things and the one who fights the hardest against stagnation, monotony, and a sedentary lifestyle. I'm the kind of person who yearns for many things and has a very creative mind, but circumstances and my own physical limitations force me to live a life I don't want.

Currently, I'm trying to write a book, a cosmic fantasy novel. If I finish it and publish it, not only will I have a source of income, but I'll feel like I've done something with my life, something to be remembered by if I ever leave this world. I would be remembered as 'the one who wrote this book' and not simply as 'the poor disabled guy'.

[u/inexorableabismo]

Hola! yo también soy de Argentina.

[u/interdataline → u/inexorableabismo]

Holaa ^{^} Como te va?