NF1 has been impacting my life since I can remember. I had an optic pathway glioma in my right optic nerve which, when I was younger, pushed my right eye in a weird shape and position in my face (now prosthetic).
I was not the most popular guy in school. I grew up in Italy where high school is 5 years, but it took me 8 years to graduate. It was difficult facing the learning challenges and coping with bullying. Later in life I decided to move to California, where I graduated with a MS in Biology. My thesis was a poster on the human genetic society in San Diego back in 2014…about NF1, of course.
Instead of stopping me, NF1 had given me the drive to fight, mostly because I feel what it means being disabled by it. The disability is not really physical (at least in my case), I think it is deeper than that because it causes you to doubt your potential and makes you feel different and inadequate. Even though I am employed and I am somewhat successful in what I do, it is extremely hard and very tiresome, almost exhausting. For a “normal” person 8 hours are 8 hours but for me they feel like 12. I need to keep attention to details and learn how to use my other fully functioning senses to balance what I can do.
Staying motivated is not hard since I am quite intrigued by the science behind this disease. I am fascinated by all sciences. There are a lot of questions with no answers. This condition is unpredictable in its course and affects thousands and thousands of people. I don t think that the fight is against NF1 itself by or against ourselves. I do think I am the only mean by which NF1 can made me brave or can discourage me. Just like any other genetic condition or disease we can learn them and try to fight them or we can succumb. I know that NF1 must have a weakness and I decided that I want to find out what it is. However, I need everyone’s help; I need all people with NF or not to encourage one another. I want to tell the young me in high school or middle school that those tumors or the way you feel it is just the journey that will make you the strongest of all.
I have a dream for the future: I want to obtain my PhD and I want to study at the University of Cincinnati. I need just the small push to believe in myself, believe I am not too old and believe I can do it.
QUICK TAKES
Hobby I like to ride my bike, swim, and I like to make new friends. Favorite Food Steak medium rare or alive (just kidding!) Motto “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” |
