Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Ben – A Face of NF

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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Comments (1)

  • Thanks for sharing. My husband has a mild case of NF1 he also has to explain to others. Keep educating and good luck in college .

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