I’ll just come out and say it, it wasn’t and is still not easy.
I suppose when you visit these kind of things you expect it to be crammed with positive quotes, don’t get me wrong I always try to be positive but life just isn’t like that, we all have our problems, Cystinosis or no Cystinosis.
I wanted to create this blog because, in all honesty, because sometimes I feel like I’m alone in the world. Don’t get me wrong I have my mum who’s great, think Hyacinth Bucket meets Shirley from EastEnders, if you can imagine that? I also have great friends too, but it’s just me, you know? I’ve never met anyone else with the same condition that I have and for that reason here we are.
Okay we’re three paragraphs in, I should really give a brief history about me and my condition: I’m Joe and when I was almost two years old I was diagnosed with Cystinosis. It was thanks to the persistance of my parents that I received a concrete diagnosis after months of GPs telling them there was nothing wrong with me. I was then admitted to Great Ormand St. Hospital in London, who I seriously can’t praise enough, my consultant William Van’t Hoff and the staff were incredible. Fast forward to eighteen years old after a number of years of taking bucket loads of medicines and generally feeling ill, it was time for a kidney transplant.
I’ll leave it there as I’ve gone on too long already. Hopefully I’ll continue this story soon. Thanks for reading.
See you soon, Joe.
Picture: Me aged eighteen, two and a half hours before my kidney transplant. I won’t lie I was petrified but I was still hopeful.