There are many reasons why I shouldn’t be here. If you’d shown my ten-year-old self my life as it is now, he’d have been stunned, mostly because he half-expected an early death. My father, who had Marfan Syndrome, the genetic condition I have, died when he was in his mid-40s, when I was two, and the conventional medical wisdom of the time was that this was normal, almost expected.
Marfan is known as a “disorder of connective tissue”, meaning numerous systems of the body can be affected – the connective tissue of the heart, joints, eyes are liable to strain or tear. In my teens, I had multiple spinal surgeries, but there was always the spectre of sudden aortic dissection: a potentially life-threatening tear in the aorta, the body’s largest blood vessel. Like walking around under a storm cloud, never knowing if or when the lightning would strike.
