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

Ali – A Face of NF

I was diagnosed with neurofibromatosis type 2 (NF2) at the age of 10. Six Months after I was diagnosed, I had a tumor removed that made me deaf in my right ear and affected my balance. Very soon, I’ll be completely deaf. Tumors in my spinal cord cause me almost constant pain, a tumor by eye is limiting my eyesight, and my balance continues to get worse. I’ll continue to need treatments and surgeries throughout my life. NF2 will slowly and gradually destroy my central nervous system, and it is possible that it will take my life.

I am trying to make the most of my life, have fun, and travel while I’m still able to. I’m fortunate to have been able to participate in clinical trials and to have NF Midwest events to help me meet others with NF. Having NF2 really forces ME to count my blessings, and to treat every day as if it were my last.

“I’m grateful every day that I still have some hearing, balance, and eyesight, and the ability to do the things that I love most, like baking and golfing.”

neurofibromatosis, neurofibromas, neurofibroma, nf, nf1, nf2

Comments (1)

  • Ali, Thank you for sharing part of your story in a positive way. My 16 year old daughter has lost her hearing. Keep your head up. I will pray for you Ali.

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