The story of Dan

Hi, I’m Dan.

I know I don’t look like there’s anything “special” about me, but I was born with a rare disease called Neurofibromatosis type 1 (NF1). NF1 is a genetic condition, it can be passed down from parent to child, or, like in my case, it can be a spontaneous genetic mutation.

NF1 causes tumours to grow along nerve routes. Some people will have lots, other will have very few. They can grow internally or externally. My tumour grew internally on my optic nerve. I underwent 18 months of chemotherapy, which so far has stopped my tumour from growing.

NF1 can also cause learning difficulties, Autism and ADHD, all of which I have.

 

*Find others with Neurofibromatosis type 1 (NF1) on RareConnect, the online platform for people affected by rare diseases