People with Marfan's used to have a very short life expectancy. That has improved now with a small, but larger than it used to be, population of doctors who are even aware that it exists. My baby sister is 49 and is severely impacted by it.

My mother was put on a drug that was supposed to protect her aorta, propranalol, according to some studies that were done with Marfan's teenagers over a few decades. My mother got it around 1984, when she was in her fifties. Unfortunately, it kept her up wide awake all the time, and by the time I was put on it for high blood pressure (not for Marfans) about 10 years ago, and realized that it kept me up and wouldn't allow me to sleep, Mom had been sleepless for literally decades. She had moved, and switched doctors, and the new doctor kept her on it because the old doctor did, and the new doctor didn't know why, didn't know anything about Marfans, etc. Mom was so terrified of Marfans that she wouldn't question the doctor, or get them to change it. She turned 86 last October, still barely sleeping a wink, and the health ramifications of that have hit her hard, now. Her heart has been fine, and maybe never would have been a problem. She slipped into a severe dementia last month, and my sister and I went with her to the doctors, and finally got her off of that crap...but now, she can't sleep because of her dementia, she doesn't know the day or the time of day or where she is, etc.