The story of: Alex

I was diagnosed with NF at birth. I already had over a hundred birthmarks. The doctors found that I had a glioma in each optic nerve. They also found a few small tumours in my brain. I also developed scoliosis as a child. 

At the age of 6, I suffered an epileptic seizure that left me completely paralyzed for over a week. I also lost my hearing due to several ear infections. I finally got my hearing back.

The specialists always told my parents that I would have a lot of trouble at school and might never finish high school. I had a lot of trouble at school. I was followed by speech therapists, special education teachers, and private teachers at home. I also had very few friends and very few social relationships. When I was a teenager, a malignant tumour the size of a ping-pong ball was removed from my arm. A few years later, I also had 3 small painful benign tumours removed from my neck.

Now 36, I’ve had over 50 MRIs and visual field tests. I’ve always been closely monitored by several specialists. Fortunately, the disease is stable, and my follow-ups are more distant. Despite my many difficulties, I’ve never given up, and I’ve always persevered. My parents always encouraged me, and that helped a lot. I now have a bachelor’s degree in health and physical education. I have my own tenure and work full-time in a school for students with autism spectrum disorders.

I believe that neurofibromatosis has helped me to be resilient and to enjoy life to the full. I’m also very understanding of students with difficulties. Finally, if I had three words to say to parents who have children with NF: persevere, encourage your children, and support them.

– Alex