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

Steve – A Face of NF

I am 67 years old and I have NF2. When I was 45, I had my first acoustic neuroma (now known as vestibular schwannoma) surgically removed and my second one removed 10 years later at age 55. I had a cochlear implant placed after my second surgery, but it has never worked. The surgeries to remove the tumors left me profoundly deaf in both ears, as well as leaving me with no functioning vestibular (balance) nerve. No one else in my family has NF2 so apparently mine was a spontaneous mutation at birth. Also, since I did not have any symptoms until later in life and so far it has been a pretty mild case, I am considered to be mosaic meaning the NF2 gene deletion is not in all of my cells. However, this does not mean that I am not at risk for more tumors or surgeries in the future. I will always be at risk. I actually do currently have a meningioma, but it is stable and not causing me any problems. The fact is, NF2 has taken away many things from me over the years and radically changed the trajectory of my life. But life truly is really is what you make it and I have chosen to make my life good!

Soon after I lost my hearing and balance, I discovered NF Midwest where I found a family that has supported me, encouraged me, and motivated me to give back to the NF community in the same manner that I have received. Along with Susan Buono and Laura Didier, I serve on the NF2ACT! Committee of NF Midwest to help advocate for issues affecting NF2 patients and families. Since 2011, my wife Diane and I have served as the local NF Midwest representatives for Birdies for Charity which has raised over $15,000 in support for NF Midwest. The satisfaction of participating in these worthy causes is priceless!

For me the most important elements of learning to cope with NF2 have been my strong faith, my loving and understanding wife and family, who are equally (if not more) affected by this disorder and lastly, my ability to laugh at myself and my disability. Case in point: When my grandson was two years old and just learning to talk, he was trying very hard to tell me something. I was having a really hard time reading his lips, so I said, “I’m sorry Willie but grandpa’s ears don’t work.” Without hesitation he declared in a way that I could clearly read his lips “Fix ears PaPa!” as he scurried away to retrieve a toy screwdriver from his little toy toolbox to see if he could “fix” my ears for me!!! He is five now and I must say that he is more deliberate in his approach and more patient at trying to communicate with me through lip reading than many adults are. Oh, the sweet innocence of a child and the power of love! I am truly blessed!

– Steve


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