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Stories of NF: Nathan S.

By June 6, 2019December 5th, 2023NF1, Story of NF

I was diagnosed with neurofibromatosis type 1 in infancy, but my parents knew I had NF at birth. I am 4th generation in my family to have the condition. Starting with my great-grandmother, grandfather, father, and my brother and me.

My days are met with a little more difficulty. I don’t really have plans for the future; I don’t think I want to have kids so as to avoid passing the condition.

I live with daily pain caused by tumors on my spinal nerves and throughout my body. I have a tumor behind my eyelid that is intertwined in optical nerves and is pressing against the lid causing it to swell and droop. I have had multiple surgeries to correct the drooping, but the most recent surgery I had was the last I could have without causing more problems. I deal with impaired vision and hearing.

I take each day as it comes, and always remind myself that it could be worse. NF has made me stronger because it has gave me a better understanding of pain, and gave me more compassion.

I work in a warehouse, picking orders and getting them ready to ship out. I really enjoy spending time with my family and watching movies. Or being outdoors taking in nature. I also like cooking, working on cars and building lamps out of reclaimed materials.


Motto “You build on failure. You use it as a stepping stone. Close the door on the past. You don’t try to forget the mistakes, but you don’t dwell on it. You don’t let it have any of your energy, or any of your time, or any of your space.”-Johnny Cash

Dream Vacation Somewhere with warm sand and a cool salt air breeze

Favorite Song Grandaddy’s Gun by Aaron Lewis