A little about me... and Neurofibromatosis.

I know a lot of you may be thinking, what is Neurofibromatosis (NF)?

NF is characterised by the growth of benign tumours called neurofibromas.  These tumours can grow anywhere in the body where there are nerve cells. There are three types of NF,-NF1, NF2 and Schwannomatosis.  

NF1-is characterised by multiple cafe-au-lair spots and neurofibromas on or under the skin. 

NF2 is characterised by multiple tumours on the cranial and spinal nerves, and by other lesions on the brain and spinal cord.  The hallmark sign of NF2 is tumours affecting both of the auditory nerves.   

The idea of writing a blog  was suggested to me by my auntie after seeing my article in the local paper during NF Awareness month (May). I played the idea over and over in my head, at times thinking "who would read my blog"?  I have come to the realisation that I need to do this as much for myself as for the fact of raising awareness. I have been through a lot in my life and have always been a closed book, shutting the world out.  Looking back on my journey with IVF, I can now see that holding everything close to me and not letting people in was not the best way to handle it.  I turned into a person that I no longer recognised and my relationship of 12 years broke down. Being diagnosed with NF2 has made me see what is important in life.  I appreciate life so much more, am aware of the little things and try not to take things for granted.

Gone is the closed book. The new Kylie is here and I would love to share my journey with you.