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Growing up a Bendy #MarfanMonday

Posted By HMSA Social Media Coordinator, May 8, 2017

Growing Up Bendy – Marfan Monday

Growing up with a HDCT can often be quite tricky and Marfan certainly threw a few obstacles into my life as I grew up. I suffered with aching joints, often referred to as growing pains by my doctors, that I’m sure many of you can relate to regardless of which condition you have, but I was a pretty determined kid and if I wanted to climb that tree then I was definitely going to climb that tree. I think my Mum struck the perfect balance of letting me do what everyone else was doing but also protecting me from potential harm, for example I gradually stopped playing some sports during my PE lessons at school due to risk of rupturing my aorta or damaging my eyes.

There were also often things that I could do with my joints that I didn’t know others could do until my classmates were impressed by my bendiness, sensible adult Shona now knows that doing such tricks is not good for me but at the time it definitely seemed fun to freak everyone out. It was probably not until my teens that my true differences stood out though, I was always much slimmer than my peers and my long legs and arms were clear to see. I was bullied for this at the time but now I get only compliments about my long legs from people who wish they had them, of course they don’t know the reason behind them. Growing up I always thought that I would stand out all my life, I would never fit in and be like anyone else but now I am past those years I can see that standing out doesn’t have to be a bad thing. I get stares all the time when I’m whizzing around in my powerchair and back then it would have really bothered me but these days I just acknowledge that people can be curious and I whizz off and get on with my day!

Growing up is tough for everyone with all those with hormones racing around and whilst us bendies may have a few additional battles to face I know for sure that when you look back things usually don’t seem so bad!

– Shona (HMSA Marfan Ambassador)


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