My name is Ben. I’m graduating high school next week and heading to college this fall. Neurofibromatosis type 1 was confirmed by my pediatrician at my one-year old visit. I am the first in my family with the diagnosis. Thankfully, I’ve had minor complications with only one tumor removal and one plexiform tumor. Academically, I’ve achieved high honors and earned a partial scholarship for this fall.
As a high school wrestler with countless café au lait marks and visible fibromas, I frequently need to explain neurofibromatosis at skin checks and wrestling meets. I have felt challenged and exposed, but I consider it an opportunity to educate others about our under-represented community.
I do not know what the future holds for me physically due to the progressive nature of NF. I look forward to pursing a college degree and advocating for myself this fall at the University of Nebraska Lincoln.
– Ben
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