Neurofibromatosis Support Group

Yes, absolutley yes!!! I have bumps on my scalp, and sometimes they bleed, probably scrape them when I brush my hair. But the ones I hate the most are the ones on my face and neck. And yes, people stare at me in public. I try to smile and wave when they do. Usually they smile and wave back. That makes me feel somewhat better, but it still hurts. I have had people give me advice on how to deal with my "acne". I only wish it were acne, cause then I could find a doctor willing to help me. Some days I don't want to go outside, I wish I had a mask or a bag to put over my head. Good days, I try not to think about them. Wish I could give you some sage advice, but all I can say is, hang in there. You are not alone.

I also have a few on my face, scalp and neck. usially i i make eyecontact with padults who stare at me they will get the point... i guess what bothers me the most is inconsiderate parents. the ones who don't really watch their kids... the kids will walk right up to me and just stare... trying to be polite i turn the other way... the kid just walks around me so they can keep staring... meanwhile, they parents just look up to to watch their kid and say nothing... to their kid.... i swear next time it happens i am gonna walk up to the parent and do the same thing to them...

I don't. I never really let it bother me, though it used to when I was younger(with clearer skin than now). To be honest I don't know how I became the way I did, I grew up in Asia the first 12 yrs of my life where outer appearance plays even bigger role than here. (Like... girls with NF with just ONE, ONE quarter sized CAL on her knee refusing to wear anything that shows her knee)

Anyway,... somehow over the years I stopped caring what anyone else though of me. I wore a halter dress recently, I have dermal tumors on my arms and back...rib hump from scoliosis but apparently someone told my friend I looked hot.

The way people react to you depends a lot on how you see yourself. You may not think so but people can sense your self image and will often play off that.

What bothers me about my skin now is that I seem to be not healing so well so I have what looks like bruises but are scars.

I have bunch on my scalp got one removed b/c it kept on getting infected and caused pain.

This is in response to reply 2 ...
about a month ago a little girl did this to me, and to top it off she shouts to her mom! "MOM WHAT IS ON THAT LADYS SHOULDER??? IT'S BIG!!!" I turned the other way so the little girl could not see it, BUT she came around and looked again and said "SEE MOMMA, WHAT IS IT???, IS IT A BOO-BOO MOMMA???" Her mom did nothing and said nothing! I said out loud (not to her though) "NO it's a birth defect, teach your kid some manners!"

I had enough... I was to the point where I wanted to cut the darn thing off myself!!! BUT I only had a week until my next Dr appointment to dissucss another surgery I needed and I asked him to remove the bump on my shoulder and he did! I am so gald he did!

I don't have the bumps in my scalp ( yet) BUT I do have this bump it feels like one of those "Knots" you get after bumping your head real hard, but it feels "fatty" too! BUT it's not like the others! I also have a "fatty" pocket on my inner left leg that is purplish.

I have actually had enough of the stares, and the whats that on your neck. I just get so irrated. I actually have an Nurology(however its spelled) this Friday, My regular doctor told me to ask him if there is someway to prevent them from from forming, I hope there is something, I am just really tired of NF and willing to try anything at this point!

most of my bumps are very small but when the light hits just so you can see a lot of them
no one has really mentioned much and only notice when I mention it
the freckles and spots never got to me just the bumps
they do not effect me physically but it gets to me some days
my bf says he doesn't care about them because he loves me even after showing him on the Internet what it can turn into
keeping your head up is hard sometimes but it helps

i think we all know all to well how it feels to have nf. i to would like to think of myself as "pretty" but i cant not when i look in a mirror and see all those nasty little bumps.my boys do not have any bumps and i pray to God that they will never have them i dont want them to have to deal with it like that.its hard enough on them to watch the hell i go through but they are my angels and i can always depend on them to help me smile.

Yes I have a lot on my scalp, I have loads everywhere, but recently more seem to be appearing on my scalp.

i dont have any bumps yet and ive gone through puberty but if and when i get pregnate i might get some but anyways

i know its hard. my arm is messed up and its hard being in highschool.

i raise my hand and esp. at the beginning of the year with people i dont know they freak out. i mean yea its funny for me i enjoy it but its such a pain. I would love for once to be able to raise my hand and not have people stare or laugh.

its hard in relationships too. ive had guys dump me because they didnt like it or had people hate me for no reason other than me being deformed.

but i learned early on a complex i call the screw you complex. Basically if you dont like me because of something i cant control then screw you. i try to not let them get to me.