Kay's Story: Me and Neurofibromatosis

Kay Ashton MBE has Neurofibromatosis type 1 and Scoliosis. She spoke to BodyPositive about what this means, and how she stays positive.

What is Neurofibromatosis type 1 (NF1)?

NF1 is caused by an abnormality in the body's chromosomes - to be precise, chromosome 17. Neurofibromatosis is the general name for a number of genetic conditions that cause tumours to grow along nerves.

Tumours are swellings formed by a growth of cells. They can grow anywhere within the body to any size. Neurofibromatosis type 1 (NF1) is the most common type, affecting about one in 3,000 births.

What is scoliosis?

Scoliosis is the abnormal twisting and curvature of the spine. For me, my spine curved into the letter S. I was placed into a type of back brace called a Boston brace from the ages of nine to 15, which I had to wear for 23 hours a day. The only time I could take it off was to shower.

I had a scoliosis operation when I was 15 years old. My spine is now fused into place with rods - the rods are probably worth a few thousand pounds! Complications took place during my operation due to my tumours.

When were you diagnosed?

I was diagnosed with NF1 at 11 weeks old, and I was nine when I was diagnosed with Scoliosis.

How does it affect your life?

Living with these conditions means I am in and out of hospital, have different types of tests and physiotherapy, and see doctors regularly to check up on my condition.

My NF caused scoliosis which then caused other issues such as foot drop. On top of these issues I have other medical conditions such as high cholesterol and am currently undergoing tests to see if I have polycystic ovaries. I take a cocktail of medication on a daily basis.

NF also causes learning difficulties and I am dyslexic.

I am in pain 24/7, but then again I can be a pain the bum to others!

What did you receive an MBE for?

I raised £175k for the charity When You Wish Upon a Star, published two books, and maintained a website from the age of nine. It was done to support other people going through similar situations. The money raised granted wishes for poorly children, like going to Lapland to see Santa.

What would you say to someone struggling with NF?

That you shouldn't compare yourself to other people with NF in terms of how bad it could be to someone - everyone is different and no two cases are the same. Some people can be affected internally and others externally.

You've just got to get on with life and do the things you can do and focus on achieving greatness. Make new NF friends and share experiences.

But don't sit and worry about the 'what if's. Deal with that when it happens. Because the 'what if's might never happen.

What would you like to change for people living with NF?

Every case is different but I would say pain and the unknown complications. But I can't change it. If I could, I would.