I’ve held off posting about CHD/ Heart/Marfan Syndrome month so far because 7 years ago today I was diagnosed with Marfan Syndrome.
For those who don’t know, Marfan Syndrome is a connective tissue disorder that pretty much effects everything in your body – heart, eyes, bones, lungs and joints. Everyone with the condition is affected in different ways and not everyone has all the Marfan features.
It’s funny really, you look back at your life pre-diagnosis and the signs just shout out. I was born with severely flat feet, this meant by the age of 13 one of my ankles would actually touch the floor when I walked. I was relatively tall growing up, I have a heart condition, I have tunnel vision, my limbs, toes and fingers are long (and can do the Marf test – see below) and my arm span is longer than my height – yes this a thing, the average person’s arm span is the same length as their height!
At 12 I was forced to give up all sports – I know to most people this would be a dream but believe me I’d rather be outside playing hockey in the rain then copying out of those p.e books like it was some punishment, because that’s what it was, I was being punished because I couldn’t physically do something I loved doing.
In the last 7 years I’ve been learning a lot about what Marfan Syndrome is and what my symptoms mean to me – well really I’m still learning! Last week I found out that my eyes are aging a lot quicker than they should (apparently when we get old we get wrinkles in the jelly of our eyes) so that was fun. There’s a lot of don’t with the condition that can often lead to questions on what you can do… Another thing I’m learning.
I really don’t think I’d be who I am today if I wasn’t diagnosed. I guess I’m pretty lucky. I am the first to be diagnosed in my family (spontaneous mutation) so there’s going to be a lot more questions as I get older. I was diagnosed at 16, now 23 and I am so so fortunate and appreciate every opportunity my condition has given me, friends, a purpose and the sense of wanting to help more people who may have also had a tricky start.
So here’s to celebrating this day for many many more years to come!