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

Sam – A Face of NF

Sam, 33

I was diagnosed with neurofibromatosis type 1 (NF1) while being treated for scoliosis when I was 4 years old. I had to have a spinal fusion with a long recovery.  Later, beginning at age 10, I ran into several other NF-related conditions: two brain tumors, shunt revisions, knee surgery, bone grafting to repair soft lesions on my leg bones, and eye surgery. I also have several dermal skin tumors, a large plexiform tumor in my back, and was diagnosed with learning disabilities while in school. I’m the only one in my family with NF.

Six years ago I had severe pain in my leg.  It was a peripheral nerve sheath tumor (PNST) located in my thigh, inside the sciatic nerve. After two surgeries, removal of the sciatic nerve, radiation, and chemotherapy, I’ve been cancer-free for four years, although my lower leg doesn’t function. I am able to get around with a leg brace and live independently in my home. I’m unable to work and on disability, but I still enjoy cooking, music, and gardening.

“I am still able to enjoy life and remain active, thanks to the help of family, friends and work with my family to improve NF for all through our annual SamJam music festival.”

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Comments (3)

  • You truly are ‘a fighter and an inspiration. Thanks for sharing your story, Sam … may god bless you.

  • Sam it’s lj it’s been a long time buddy but you’ve always been the most positive person I’ve known with all you have been through. I had two back surgeries and I’m no where near as positive as u with everything u have been through and I could only imagine the pain. Keep it up buddy you are an inspiration to lots of people. Miss ya buddy!!

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