AMann's Story:
i have had nf type one for almost 15yrs i am now 34. they started appearing when i got pregant with my twins. after i got divorced i never thought i would meet someone that would love me because i feel very ugly. i don't have many on my face but was ashamed of my body. I have more on my back then anywhere else. i have a huge one on my neck which i hope to get removed i will know if this is possible on may 3rd 2001. they are not sure if they can remove it because it might be growing on a major blood vessel god i pray that it is not.the good news in my life is i did find someone to love me. he is a great guy. he recently adopted my three children. he says no matter what happens he will love me no matter what.
i do not wear shorts or a swim suit. i wear long sleeves most of the time yes even in the summer, i will put myself through misery in the heat to avoid embarrassment.
i thought i was alone with this disease but just found out i am not alone. i found this wonderful chat room for nf patients they are all very friendly in the room.
Well i am ending my story may god be with all of u with nf.
AMann / Added July 2001