I was diagnosed with NF1 in 1962 when I was six. Prior to that, I had yearly visits to the cancer clinic at University Hospital in Saskatoon. My mom and the doctors were concerned about the tumour growing on the left side of my nose. Mom suspected that the forceps used in my delivery were the reason for the tumour.
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I found out I had NF1 when I was 14 years old. This happened only because I developed a few strange lumps under my skin on my forehead, one doctor thought it may be fatty tissue, and another doctor thought he would remove them and just to be sure. 16 years, and 6 surgies later I am a semi healthy 32 year. I can’t say the journey was easy, but it was a lot easier then so many other peoples that I guess I feel lucky.
Jesse is a vibrant young 5 year old boy who as well as having NF (passed on by his father Chris) was diagnosed in November of 2009 with type 1 diabetes and has multiple insulin injections daily. When he was 2 years old there was a neurofibroma discovered on his optic nerve. He makes a yearly trip to the Hospital for sick children in Toronto for an MRI to make sure the tumor hasn’t grown, and isn’t affecting his vision, thankfully to this point the growth has been very minimal. Through all his troubles with both diseases Jesse makes no complaints and does everything a healthy 5 year old would do. He is such an inspiration to our whole family.
Contributed by Jesse’s parent, Chris
My name is Elena. I was diagnosed with NF at the age of 7. I found out when I went to the BC’s children hospital in order to have a tumor removed from leg I had broken earlier that year. At this time I was only diagnosed with NF and the tumor was not removed. I ended up breaking my leg 3 more times when they decided to operate.
To some people, neurofibromatosis is a curse. It’s a disorder that causes painful tumors, deformities and life threatening illnesses. For me though, it’s something that has made me into a better person, and it’s something that I am beginning to appreciate.
I am the only person in my family living with NF, meaning I was a “spontaneous mutation”. For a long time, I felt like an outsider, I felt different than everyone else. All I wanted was for someone to tell me I was going to be okay, and that my NF would not take control of my life. Although I wanted to be reassured about my condition, I didn’t want any of my friends to know about my NF.