Life Challenges Living with Neurofibromatosis

Having to live with Neurofibromatosis can be a hassle at times, and it will always have their moments. There are three types of Neurofibromatosis: and they’re Neurofibromatosis type 1 & 2 and then its Schwannomatosis. The type that I have is type 1, and it cause wherever nerves are in your body for tumors to come out, learning disabilities, blindness, scoliosis, cancer, bone deformity and sometimes death.

The total of times that I’ve been in the hospital for surgeries to remove tumors was 18 times since birth, and I vaguely remember the first time I had surgery, all I remember was they wanted to remove a tumor from off my left foot because, it began to bother me and the doctor had told my mom that they wanted to cut off my foot, but my mother had told them “No, she’s too young and I’ll let her make that decision when she gets older.” So, the doctor said “okay, we’ll give her some pain medication to help her with the pain.” My mom began to do just that and began to pray. Another doctor tried to correct the length of my legs by putting a rod in my left leg because it was shorter than the right one and that didn’t help because, I wasn’t able to walk until I was 3 years old.

By the time I was about to start school my mom would have to bring documents stating that I have this medical condition, so they could understand what is going on. There was this one teacher that I did have when I was in middle school, my teacher Mrs. Smith, she would always stand over me saying that “you’re lying about having that medical condition because, I don’t see any tumors on you.” Then when I had surgery on the back of my neck to remove a tumor that was causing me headaches which caused a lot of pain and discomfort every day, when I had gone back to school after the surgery my so called teacher told everyone that I was contagious and for everyone to stay away from me, which that had caused me to cry. I just couldn’t understand why they treated me so horrible, when I didn’t do anything to them.
That night my mother was able to figure out what had happened with the situation at school, so both of my parents decide to go up to the school and speak to the principal about the whole situation. My dad was furious about the situation because, he wouldn’t allow anyone to mess with one of his princesses, and he told the principal “Call that lady Mrs. Smith down to the office so I can talk to the both of you.” As soon as Mrs. Smith came into the office and she look like she was afraid to see me and my parents, so both of my parents began to ask her and the principal why they were treating me like this, it’s not my fault that I was born with this condition.