A new friend has joined us, Patricia Stokley

Hi Reggie

I am so glad I found your web site, I have looked at several different NF websites and all I ever saw was support groups for children, not that I don’t think kids don’t need support, they do, I know how mean kids are so very mean. but adults need support also,

I do feel that I am luckier then a lot of other people with NF, most of my complications are hidden except for my speech I had to take years of speech in school, I could not even call my sister by her name, Linda, it was too hard, my tongue is deform in the back, I have a hard time hearing, I can hear noise, but so many times I just cant understand what is being said, and i know people get aggravated with me when i ask them to repeat themselves more than once, but I just cant understand, I have seizures, and there are few other problems I have I only have a few of the tumors (my mother always called them bumps) and a lot of the cafe spots (my mother called them birthmarks)

The only people in my family that has nf is my mother, myself and my daughter, we don’t know where or when my mother got it I was born with it and so was my daughter.

I do have a good life, I am 43 I have a husband who loves me, and he knows that one day I can have the bumps all over me like my mother, and he says that it does not matter to him My daughter loves me and does not blame for passing nf on to her so far all she has is the cafe spots, I do have a job but not a very high paying one, when people hear me talk they think i not that smart

But I have been wanting some sort of support group, with people who have nf, or least know what it is, when i tell people what i have they don’t have any idea what I am talking about, plus i cant say the word neurofibromatosis, nf is a lot easier for me to say I have some people ask me (who know my mother) why she does not get them removed, I even had a physicians helper at a neurosurgeon office who did not know what nf was,

It seems like so little is known about nf, but it really affects more people than what I realize, I grew up thinking it was a skin disease it was not until I started having seizures that it was the nervous system that it affected, that my speech problems were a part of my disease, and a lot of my other problems if I had only known then what I know now, may be my life would have different.
Thank you for putting your web site out there

Take Care

Patricia