I've personally known about 'NF' my entire life...so I've had 35 + years to read up on this disorder and how it affects people. But I never wanted to believe that it was something that would affect me.
Even at 5 yrs old, I could say the word "Neurofibromatosis", and explain to other people that my older brother Mike was getting chemo for a brain tumor.
But 'NF' was always something HE had....Not me. It wouldn't be until I was 33 yrs old, that I would be officially diagnosed with NF myself. A devastating blow, but one that I knew was coming.
I had the bumps, I had the birth marks, I had the freckling...But why had I gone undiagnosed for 33 yrs? Why had no doctors recognized NF in me? I was scared, but at least I knew what I needed to do, for ME and for my children.
My oldest child who has NF has made me the proudest I could be...She has started a blog (without prompting I might add) About being a child living with NF. I am quite impressed with her. SHE is continuing the legacy.
Life has its twists and turns and unexpected bumps in the road (pun intended) -- So what are you going to do with that? NF has taken our family down a road that I never ever wanted to go down. But here we are. The choice is up to us in how we choose to make our journey....it could be a long and torturous one, or we could choose to take what God has given us and do good with it.
NF isn't fun, I know that and understand that. But we can't just hide and suffer in silence. People need to know what it's like living with NF. Please reach out.... I know what it's like to want to hide from NF. I was scared too. The best information comes from people who actually have Neurofibromatosis. All we have to do...Is to get people to LISTEN.