Written by Bianca
I was 4 years old when I was diagnosed with NF1, the same moment I was told I had an optic nerve glioma that would require immediate treatment. I’m the only one in my family to have NF, so that must mean I am special.
I don’t remember much about the first round of Chemo as I was only four, but I certainly remember the following rounds as I got older.
Primary school was good with only a few kids asking why I had so many spots. I would say they are just my “beauty marks”. My Café-au-lait spots don’t bother me at all, I know they are harmless.
When I was in Grade 5, I gave a talk about NF at my school. It was at this same time that I had to have Chemo again to save my vision. I cried a lot when my Mum told me I had to have Chemo again. I remember feeling scared and angry that I had NF, particularly when no one else I knew had it. I felt like my friends wouldn't understand what I had to deal with.
But once I gave my talk to my classmates, I felt so powerful. By explaining my NF journey to everyone, it felt like I finally had control over what was happening with me.
Having chemo at age 10, every week for one year was stressful and scary. I hated not having any other option to save my vision. What helped me deal with my fears and anxiety was music. I use music to help me deal with my feelings and find singing really load helpful. I even started to write music lyrics.
When I finished chemo, I was over the moon. I just want to be free like other kids my age. Sometimes It’s hard when I have so many doctor’s appointments. I don’t feel different from my friends, I’m just more aware of what other people have to deal with because I have seen so many children in the oncology department.
Right now, I have eye check-ups every 3 months. I still get nervous waiting for my results. What if, my eyes have gotten worse? What if I have to do chemo again? It’s the best feeling when the doctor tells me my eyes are “stable”. I just want to jump for joy, but I know it can change at any time.
I also have MRI’s every 6 months. It does not hurt, but the loud banging freaks me out as I try to lay completely still in the machine. I have been having MRIs for 8 years now and you would think I would get used to it, but I still get anxious.
I do worry about my future. It’s filled with a lot of unknowns. What else will NF bring for me? I’m very scared of going blind; having low-vision is bad enough. How many bumps will I get? Will they be big? Will people stop hanging out with me because of the way I look?"
I wish there was a cure for NF so I don’t have to worry about getting anymore tumours.
Having the NF1 condition is terrifying and lonely. It's harder when no one is familiar with it.
I have to live with NF1 everyday of my life. Life would be so much more easier if people had awareness and are more understanding of what I have to live with.
I have no control over my NF1, the one thing I can control is help bring NF out of the shadows and into the spotlight.