Be careful about what these people are telling you. It is true that the survival for people with Marfan syndrome
is much better now than it used to be, but it is VERY IMPORTANT that a patient with Marfan is seen regularly by a doctor who knows what to look out for.
The main thing to worry about is aortic dissection
. People with Marfan syndrome have a defect in their connective tissue
which makes them more prone to aortic disease that can eventually rupture. This needs to be followed regularly with ultrasounds and/or MRIs. If the aorta
starts to get big, surgery may be necessary to prevent eventual rupture.
The good news is that with modern surgical techniques and screening practices, ther average life expectancy of people with Marfan's has increased dramatically. For men, the average survival has increased from 41 years to 70 years since th 1960s, and for women, the average survival has increased from 49 to 74.
For more information, visit the National Marfan Foundation website.