Neurofibromatosis Support Group

yep..they make me feel hideous espeacially when i try on clothes at the mall and walk out of the dressing room to look in the triple mirror..sales gals cackle at me..even my own sister tells me how ugly i am...

Yes, we know how you feel. Those who have NF that is. Those who do not can't even imagine what it is like. My wife says it does not bother her and that she does not even notice 'them', as if those words are supposed to be comforting. Of course, she did marry me knowing I have it. Regardless, I cannot change how I feel. Though I do not take any, or see a Pyhsc, I
doubt if either would alter my thoughts.
What really gets me though is here disbelief that I do not like the beach or refuse to take off my shirt. Saying I would rather die than remove my shirt if somewhat over the edge, but it is close. Like I said from the start, I do not expect those w/out this to understand. Then I am asked why I wear a long sleeved shirt to work during the summer time.

i think the only bump i have is on my scalp if thats even what it is. as for the spots they never bothered me. except maybe the one on my neck because people tend to think its a hickey. My ex gf thought my spots were hot and liked to kiss them

i have bumps on my scalp. and when i get my hair done and they hit one it makes me dizzy dont know y. but it dose. my boyfriend alwaz tell me im pretty ever day. i just say thx u. i feel the bumps make me ugly cause there all over my body my boyfriend says its not whats on the outside its whats on the inside that matters 2 him.

I Know just how you feel I too have those on my scalp as well as a cluster above y eye as well as every where else any way I know it hurts if you brush over one while brushing my hair. And believe them when they say youre pretty your still so young don't let nf make you feel any less. I wish I had listened to tis same advice years ago, I might be a lil better at helping my girls w self image, although they do seem so much more confident than I ever was .

This is old but I need to reply.. I have definitely been made dun for my bumps. I have one that is quite noticeable on face and several on my arms. I have had people ask me why i don't remove them all.. They do make me feel a bit bad at myself sometimes

I think that annoys me more than anything, when someone asks me why I don't have them all removed, I have hundreds all over. I want to hold out my hand and say, "just give me like 20,000 dollars and I'd be glad to." Haven't had the nerve to yet, but when just the right person asks.

Ya i got made fun of in high school for my bumps. I had a tumor on the side of my head that I just had removed... they even gave it a nick name nelg my hame speeled backswards. I just played along. even though it made me mad

In response to Michelle,
I ams orry that happened to you. I have to ask...Is that you in your profile picture? You don't appear to have on your face. only on your neck? Honey that aint bad. I have them on my face and neck pretty much all over. About the comment someone made to you "they aren't very attractive" you should say, "funny, you say that,I was gonna say the same thing about you".I bet she would shut up then! Yes i have them in my scalp and oh well. I would much rather have them there than on my face.
In response to Marah,
Honey yes...people make comments about my "acne" all the time. This one lady was like "you should come get a facial i can get rid of all that acne" I said "it's a skin condition, not acne" If i told her the name she prbalbly wouldn't understand. When i tell some people they say,"I have never heard of that before".Sometimes i want to say "yeah well you're not the sharpest tool in the shed" I do have a little acne and I see a dermetologist for that.

I guess everyone has a differen experiene as far as their bumps go. I have them on my head, body and arms. I have one that bleeds or gets scabs once in a while but still get my hair cut though. May be it is because I'm a guy but it really hasn't bothered me. If people ask about them, my answer depends on how much time I have. Not everyone knows what NF is, there are Drs that have never seen it before. I don't hold it against anyone for not knowing.