Photos

I know it seems dumb but I wish more people on here would post there pic up? there are alot of people who don't have one.

Report post

24 replies. Join the discussion

I get stared at and I know it is not my good looks if it was kids and some adults mostly kids would not say mommie what is wrong with that woman's face. A few years ago some OLD man thought that I had warts makes me laugh now, but not then.

Report post

My picture is not posted. I do have NF. I am not ashamed of It. It is what I have not who Iam. Iam on facebook too and my picture is not posted.I JUST DON"T WANT MY PICTURE POSTED.Besides most of the pictures posted looks like they do not have NF.

Report post

ur welcome :0)))

Report post

Thanx NF1DIVA1978!

Report post

I CAN UNDERSTAND HOW U FEEL PPL STARE AT MY ARM THE SAME WAY I HAVE A REALLY NOTICEABLE ONE BY MY ELBOW BUT U KEEP UR HEAD UP HIGH I THINK UR VERY HANDSOME MAYBE THATS WHY THEY STARE BECAUSE OF U CHARM AND GOOD LOOKS GOD CREATED US ALL IN HIS IMAGE :0)) STAY BLESSED

Report post

THNX HUN I HAVE COME TO REALIZE U CNT PLEASE EVERYBODY BUT THNX FOR RESPONDING :0))

Report post

Hi NF1Diva1978 --
I don't mind the caps for the caps themselves. I am not a quick reader and the use of capital and lower case letters guide me in reading to know where the next sentence begins and when I am looking at a name of a person or place. Not a big deal. I read your posts just like the others. It just takes me a little longer.

Report post

For me having NF on my face has always been a problem. I mean when you talk to someone or meet people its the first thing they see so when I talk to people I never give eye contact cuz I feel like thats what they're looking at so I've always felt insecure about it. Deep down I dont think thats ever going to change for me so I'll always probaly feel this way

Report post

i figured it out

Report post

i don't know how to post a picture

Report post

NO APOLOGIES NEEDED U ARE AN ADULT AND THAT IS UR KEY BOARD TYPE HOW U WANT :0)))

Report post

ONCE AGAIN I AM SOOO SORRY WHO FEEL THIS IS YELLING I REFUSE TO STOP TYPING IN ALL CAPS BECAUSE A FEW PPL FIND IT OFFENSIVE I CHOOSE TO TYPE IN ALL CAPS AND ONCE AGAIN ITS NOT INTENTIONAL OR TO OFFEND ANYONE NO DISRESPECT TO ANYONE BUT IF A PERSON DOES NOT LIKE IT THEN DNT FOLLOW ME OR RESPOND TO WHAT I SAY. IM COMFORTABLE TYING THIS WAY AND WILL NOT CHANGE TO MAKE A FEW PPL HAPPY SORRY BUT THATS JUS THE WAY I FEEL AND I WIL NOT TOUCH ON THIS SUBJECT AGAIN ANY PROBLEMS SEND ME A MESSAGE HAVE A BLESSED DAY AND ONCE AGAIN I AM NOT YELLING JUST SIMPLY STATING HOW I FEEL IN ALL CAPS THE WAY I LIKE TO TYPE




THANKU ...................MISS NF1DIVA1978

Report post

I did not about my NF till over 50. I always had cals and freckles but not on ace and hands untiol pregancy in late 30s and still the diagnosis was missed. I laways took bad pictures and was emabarassed and know as I aged definately my looks have changed in ways that are just aging.

Even with all this I would put up a photo if I knew how. I retired a few years ago after a 30 year career as a lawyer and was the last of the gerneration who had secretaries type their work. This was good bcause while I got As in most academic subjects except foreign langauge i was the worst at art gym and typing.

I actually have no clue how to upload a picture and send out emais where I do CAPS of what I think is important. A few months ago I read how that is yelling.

My daughter is on summer break from getting her MSW. I see if we can find a photo I like and she can teach me how to upload. I thought about using my late dog Buttercup both as my name and for a photo.

To everyone who is a mom or is honoring a mom next week Happy Mother's Day

Report post

Hi Gretchensmammy

I to don't like that he is ashamed of it and wish he would be comfortable in his own skin, outwardly unless you knew some of the finer telltale signs of having NF you would never know... I think for him it stems back to how his own parents where when he was young as neither of them have it and compared to siblings he was treated quite differently ( I won't go into detail) but is has definitely left some emotional scareing along the way. So out of respect I just don't post a pic.

Report post

hello,i am so sorry to hear that your husband is ashamed of having nf.i myself & 2 of my children have nf1,we have never been ashamed of having it.& we never will.all forms of nf makes us all differant.i hope that in time that he can accept having nf.i am not having ago at ur husband,i just hope it appears that way.and u dont have to put a pic up of urself or a family member it can be whatever feels right to you.

Report post

i sometimes bump my cap lock and dont realize it never thought about it being rude or yelling just not good on the computer and bump letters not intended sorry if it is so rude.

Report post

I totally understand that, it took me a while to get the internet etiquette figured out, and I am sure there is still a lot I have to learn. Welcome to the board- I think there are a lot of fantastic people here. . . . and i wish more of them would post photos too, but I understand that some people are uneasy about it. ;)

CG

Report post

NEVER THOUGHT OF IT AS SHOUTING I AM A CHRISTIAN MY INTENTIONS ARE NOT TO OFFEND PPL I JUST KEEP MY BOARD IN ALL CAPS. BUT WILL TRY TO REMEMBER

Report post

That is what she is talking about. All caps is the internet equivalent of shouting, and is generally considered impolite.

;)

CG

Report post

UMMM EXCUSE ME I WAS NOT YELLING I JUST TYPED IN ALL CAPS THAT IS NOT MY STYLE TO GO AROUND YELLING THANKU VERY MUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Neurofibromatosis Network

Help the Neurofibromatosis Network reach its goals and support people like yourself by making a donation today.

Donate to the Neurofibromatosis Network

Discussion topics

Beauty Mark Nation

Beauty Mark Network

Resources from NF Network

Find an NF Walk Near You

Find an NF Walk Near You

Community leaders