Kirsty Ashton M.B.E
Kirsty's Story

 Living with a condition called Neurofibromatosis (NF1) and  Scoliosis

Book Available "NOW"

Living with Neurofibromatosis and Scoliosis, with input from three doctors. Click buy now if you live in the UK.
This Book is also Available on
Kindle, please click here for more
information and for orders outside the UK.

 Last updated

    16th May 2012
I started I writing what life is like with Neurofibromatosis and Scoliosis when I was 9 years old (1999). I live at home with my mum (Julie), Dad (John) and brother (Chris). I suffer from two condition's, Neurofibromatosis (NF1) and Scoliosis. I have written a book about living with NF1 and Scoliosis, which is now on sale. I am excited to share my story with the world and those living with NF and Scoliosis and by doing so I hope to bring a little hope your way.

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My Diary
2012 		Diary Archive
1998-2011		 Mum & Dad's
Journey
with me		 What is
Neurofibromatosis?		 What is
Scoliosis?		 What is a
Boston Brace?		 Fun Things
That I Get Up to
Events for
Charity		 Money Raised
for Charity 		Items For
Sale 		Auction
Items		 Press
Cuttings 		My
Pictures		 My
Supporters


16th May 2012:

I have got a busy few weeks ahead of me, I am working on my course assignment, which is about NF, I have been busy filming people, interviewing people with NF and interviewing some doctors who know about the condition Neurofibromatosis.

I am also working on building a new web page. I have decided to get rid of my guest book so if anyone would like to contact me please do send me an email by clicking on the envelope to left.

I have also been back to see my Orthotic doctor (Steve) over my knee, foot and back brace. The knee brace that I am trying out is called a Q Brace, this brace is to help stop my knees from dislocating and hopefully help with the pain. They are very difficult to put on and even worse to take off when knee has swollen as with this brace you have to pull the entire support (brace) past the heel. Then from a standing position using both hands with a firm grip , pull and centre the support over the patella. I then have to position a "T strap" on the lateral side of the patella, all bit complicated. I am back to see Steve next week as he has ordered some more for me to try.

I have been having a lot of pain in my back so Steve is having a word with my spinal doctor (Mr. Oxborrow) to see if it would be wise to try a different kind of back brace.

I am also working on a variety charity night for "When you wish upon a star", it takes place on the 26th January 2013 and I am looking for lots of different talents, such as: dancers, singers, dog acts, choirs, bands, magic acts the list is endless, if you think you would like to join in the fun then please email me for more information.
I have also uploaded a new press cutting, please click on the link above to view this.

I am know going to be updating my blog on my front page and every time I do an update I will put the previous blog into my 2012 link. More information about my book can be found on the items for sale link . If you would like a signed copy of the book please click the "Buy Now" link.
I am sorry but I can only post signed copies to the UK. for copies outside the UK please
click Here

Take care and thank you for dropping by xxx

 

 

 

 

 

 



A big "thank you" to Keith, Pat, Alex. The Printon, Advanced Digital Solutions for there support.
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"Please Note"
As you read this please keep in mind that all treatment and outcome of results are
specific to the individual patient and results may vary. I hope that by sharing my
 experience with NF, Scoliosis and my spinal fusion surgery will help if you or someone you
know has any of the conditions.