Living With Marfans

Jon living with Marfan Syndrome:

I was diagnosed with Marfan Syndrome at an early age (due to my sunken chest, poor eyesight, long limbs and a heart murmur). As I got older and entered puberty, I grew very quickly and became very thin. It was extremely difficult for me to gain any weight. In school, I was picked on due to my thinness. I was called "bones", "skelton", "beanpole", and a lot of other lovely "skinnyisms".
Being an active teenager, I played a lot of neighborhood sports, including street hockey, baseball and basketball. I was always more winded than the other guys, but I felt it had to be due to my sunken chest and I'd just learned to deal with it. I also had some pretty severe headaches that were different than the typical pain in the head type I had experienced at a younger age. They were more painful and usually were accompanied by spots in front of my eyes and sometimes a nauseous feeling. I did notice aches in my legs and arms but just associated that with growing.

As I completed my teens and entered into my early twenties, I began to put on weight, I started to workout with weights (not knowing at the time of the dangers of doing so)  and increase my calorie intake considerably. I noticed some increase, but it was extremely difficult to put on the pounds.


Jon at the age of 18.
July 1977