Kirsty's Story
Living with Neurofibromatosis and Scoliosis
by
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Neurofibromatosis (NF) can be a very cruel condition and no one can say what life holds for someone with NF, with me it caused Scoliosis, which required major surgery. An operation at The Manchester's Children's Hospital in March 2005 to place two titanium rods on ether side of my spine to correct my scoliosis came with risk. Eight hours into the operation the surgeon had to stop due to complications. My parents were called for,
The surgeon told my parents he had never seen so many tumours on anyone's spine.
I have been told I have at least one tumour on every nerve on my spine. I also have many internal tumours that have given me lots of other problems. I wear a back brace, knee braces and leg/foot braces on both feet due to the tumours on my spine causing foot drop in both feet. But even though I have NF I am not about to sit back and let NF take over my life. I have sat in hospital after hospital with my mum and seen doctor after doctor and not understood a word they have said, just sit back and think how many times have you come out of your doctor surgery not understanding what he/her has said? Well, for me it's been almost every time. So I decided to write a book using words that young people can understand. My book is not all about gloom it tells of the good things that have happened to me, I even got to meet Prince Harry and Prince William and have tea with them.
I hope by sharing my story with you it will help you to understand a little more about Neurofibromatosis and Scoliosis and that my book will answer some of your questions
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About the Book
In 1998 Kirsty was enjoying weekly swimming lessons; and she had also joined the same dance school as her brother (Christopher). Chris had been having dance lessons for a few years and Kirsty wanted to dance on a stage like her brother and was looking forward to her next stage show. Ten years on and Kirsty can no longer dance or swim as well as she could when she was eight years old. She had to give it all up due to being in so much pain. She depends on elbow crutches and use's a power scooter when out shopping and needs help with some of her everyday needs. Kirsty's story tells how and why her life changed due to the problems caused by Neurofibromatosis and Scoliosis. And how she's managed to overcome any obstacles put in her way.
When Kirsty was 11 weeks old she was diagnosed with Neurofibromatosis (NF1), which caused no problems until she was eight years old when she was also diagnosed with scoliosis. She now lives a very different, but full life, where she is surrounded by her family and a large group of friends, some of whom have made a contribution to this book with their own thoughts.
Kirsty's story is a remarkable one. Physically she remains weakened by her condition but her personality and character remains undamaged.