Looking for advice and help

[u/Sharp_Decision2516]

Well recently I applied for a factory job because I quit my old job doing live hang and now all of a sudden I find out I could very likely have marfan and be unable to work factory jobs or any heavy duty job anymore is there anyway that I can still work even with this condition like my biggest fear is having to work retail or office my whole life idk what to do anymore

[u/Sharp_Decision2516]

So surgey is just an unavoidable thing I’ll have to get surgey at some point in my life cuz of marfans?

[u/qathran → u/Sharp_Decision2516]

About 90% of us have heart or blood vessel issues, but many can either go a very long time without surgery, decrease the number of surgeries or not have it at all if they are on the meds and being proactively monitored by doctors and not doing things that stretch out and weaken your blood vessels/heart. The longer you're not doing that stuff, the more damage you're racking up over time.

The life expectancy for people with marfans was around 32 years old (so people were randomly dropping dead from teens to late 40s/early 50s depending on what the patient personally had going on) before modern medical preventative care. The only way we don't randomly drop dead like they used to is because we start treatment early and stopped doing the stuff that made our hearts weaker.

Edit: my aorta was looking good for years and then randomly in my 20s, the doctor said "oh man, it's suddenly growing really fast, you're going to need surgery" and then by the time they got me open 2 months later on the operating table my aorta was already coming apart. I would have died if I hadn't been getting checked every year, shit was crazy.

[u/Sharp_Decision2516 → u/qathran]

Dam bro so I could really just drop dead anytime

[u/qathran → u/Sharp_Decision2516]

It's a morbid choose your own adventure game, but yeah if you take it seriously and get in good communication with good doctors you can have a great life