Tim - A Face of NF - Neurofibromatosis Midwest

42 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

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“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
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“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
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“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
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“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
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“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
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neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Tim – A Face of NF

Posted By Diana Haberkamp | On May 14th, 2019

I am 64 years old with no prior neurofibromatosis family history and none of my 6 siblings have NF, making me a genetic mutation. I did not develop any fibromas until my late teens / early 20’s. My family doctor at the time (over 40 years ago) removed one, biopsied it, and simply said “nothing to worry about”. I am now 64 and my back is loaded with fibromas, also several on my limbs, and more recently I am developing some on my face, which make me a little self-conscious. Over the last 10 -12 years I have had over 100 removed, mostly from my back, and so far none have been cancerous. My adult daughter (38) inherited NF from me, and her symptoms are more severe than mine.

– Tim & Sue (wife of 22 years)