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Living with Neurofibromatosis

Neurofibromatosis Awareness

My name is Bryan Caruso and I have a disease called Neurofibromatosis type 1 (NF1). When I was 3-years-old, my mom noticed a tumor on my back and took me to a neurosurgeon to get it checked. That was when I was diagnosed with Nf type 1. We also have had genetics testing and no one in my family history has ever had Neurofibromatosis. I am the only one.

Neurofibromatosis has affected me physically, mentally, and psychologically. I have spots, called café au lait, which look like birthmarks scattered all over my body. I also have had cysts, called Neurofibromas, grow all over my body, some deep in my skin tissue and some superficial. Thankfully, they have been mild cases. I had many surgeries in my life to remove neurofibromas. I even had a neurofibroma removed from my brain when I was 12-years-old. Back in 2011, I had a plexi neurofibroma removed from my right eyebrow. If this doesn't shock you enough, they had to cut through my eyelid in order to remove it because of the location of the fibroma. The reason behind that is, there is a main nerve that runs across your face, known as the trigeminal nerve, that is responsible for all of your facial movements. If they were to cut exactly where the fibroma was, they would have damaged that nerve which would have caused me to lose movement of any muscle below that damaged nerve on my face. YIKES!

Neurofibromatosis has caused me to struggle with learning disabilities. I have struggled my whole life throughout school. It has been very hard for me to remember, comprehend, and perform well on test. I have had many tutors to help me through out my school years. I even had many attempts to complete college courses in which I struggled to accomplish. It also effects my way of thinking, reading, writing, and the way I speak. I have had numerous occasions where I have been fired from jobs because of my inability to perform adequately at work or as expected for the job. I have had numerous occasions where people would think I am high on drugs because of the sound of my voice, the way I do things and also my speed of doing things. (I always get complaints that im too slow)

As anyone can see, this is very emotionally hard and overwhelming for me and has left me with a great deal of depression and fearing for my future. Its hard for me to find jobs. Its hard for me to find friends who understand me. Its hard to learn and to be adequate at anything I do. I still live with my parents (im 38 years old) because I can't support myself on my own due to the fact that I can't find or keep a good job. I tried to apply for disability but I got denied because I can still use my hands and legs. I am scared! How am I going to survive when my parents pass on? Yes there are some government aids out there but I refuse to live under the government. Im trying my hardest to live a normal life.

You are probably wondering what is the point of my rant. It is to show the world what goes in a person’s mind who has to battle this disease. Also, the grammatical errors and improper grammar ,if any, were left intentionally to show you how a NF effects a persons mind. It is also to help gain awareness of this rare disease in hopes to increase the chances of medical researchers to helping to find a cure.

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