Story about Haemophilia .

How Haemophilia Changed My Life in 100 words or less (kinda)

Dec 14, 2015

By: Ben


Haemophilia has been a part of my life from the day I was born. When it came to my diagnosis it was a pretty simple process considering we already knew my mum and her dad had Haemophilia so I was confirmed at only a few weeks old, that is something I have always been thankful for. Growing up as a bleeder wasnt easy, the cuts and bruises werent fun but the really hard part was the looks from others who didnt understand. It really made me feel like I was in a separate world to the rest of them, a far more dangerous world where I was the only inhabitant. This brought me to the point where I was suffering depression; believing I was hopeless and that all life could have in store for me was more dissapointment and pain. What turned this around for me was when I started getting into the yearly HFV family camp and the boys only Blood Brothers camp run with Purple Soup; meeting other people who really understood the struggle made the difference I needed and getting to test my limits and prove what I was capable of helped me believe in myself and really turned my life around. By 16 I was self infusing, by 18 I was living by myself, at 19 I was employed my Purple Soup to help run the camps and now at 21 I am on the HFV committee and have graduated from my undergrad at uni.

For anyone out there feeling lost in all this please don't be afraid to ask for help. I have already achieved so much with my Haemophilia and without the help available to me I'm not sure I could have made it. For me Haemophilia can he a daily struggle, and I've had my close calls with crippling injury and even death, but when it comes to the skills I've learnt and the amazing people I've met I wouldn't have it any other way.

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