Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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fabulous 06/14/2007

NF can be a pain (for me) in the summer. I dread the summer months. I dont wear shorts sleeves or shorts or sandals.. So I look like winter in the summer and winter in the winter. I live in hot Florida and just dont know what to do. I mean its cotton shirts but oh well, its either wear the short sleeves be happy have everybody stare, or wear long sleeves be hot and miserable and everybody still wonders why Im wearing long sleeves in the summer. What to do?

deleted_user 06/15/2007

hi fabulous

i know how you feel . i won't wear a bathing suit in public as for shorts and short sleeve shirts wear them let ppl stare . just keep telling yourself your beautiful they are the ones with problem be comfortable

here's a bigggggggggggg hug

bellastarr

Marah 06/15/2007

I found a bathing suit this year that covers almost all of my front and most of my back! I know the ones on my arms and face and neck still show, but TDB if others don't like it. I can't help it any more than a paraplegic can help being in a wheelchair.

deleted_user 06/15/2007

I have covered myself up before, trying to keep others from starring. But today I refuse to add anymore unnecessary discomfort to myself. Iam going to wear my shorts and short sleeved shirts and if it bothers others so what. I can't hide that I have all these bumps and lumps, people can see that they are there so whats the use in being miserably hot on top of it all.

deleted_user 06/21/2007

Folks, do what I do when people stare. Stick your tounge out at them. :-) I know my daughter does it all of the time.
Look, if folks are ignorant, it is not your fault they are that way. Don't make yourself uncomfortable, especially in the summer months. You may end up with nasty rashes instead.

deleted_user 07/01/2007

GOOD FOR YOU GIRLS I dont give a dang what people think I wear what I want I do wear capris because im not slim not because of the bumps I do hve a lg bump below my neck that I cover up but there are ones on my arms face ect.. bathing suits scary t-shirt
over it lol

Marah 07/01/2007

When I notice people staring at me, I smile at them. They actually usually smile back. If I don't feel like smiling, I just look away, and then I don't know they are staring anyway.

deleted_user 07/10/2007

I have a large spot that had recently sprung a baby and I have to keep them out of the sun because they get irritated. People ask me all the time what happend to me, Im trying to come up with a funny response.

deleted_user 07/11/2007

I love the summer weather but hate been shirtless with lots of people. The last few years we've done villa holidays with own pool to avoid the stares. Do go to the beech now & again but try to find a isolated spot. Maybe i should try a nudist beech :-)
I think its even harder at BBQ at home although im with friends vertualy non of them have seen me just in shorts.
Dont think Florida is the best place to be covered up have you thought of Alaska :-)

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