Neurofibromatosis Support Group

I too have growths everyhere, including on my face and hands, the only advice is to be brave and let people stare. I must admit I am still wearing long sleeves and a beard to leessen the stares, but maybe one day I will be able to face up to my illness.

I don't wear long sleaves or long pants in the summer. I have so many on my face and neck, I would have to wear a full burka to cover them all. I hate it, but can't afford to go to Dr Weinburg in NewYork to have them all removed. So what can ya do? Nothing I suppose.

I ALSO GOT WORSE AS I GREW OLDER. SOMETIMES I THINK THEY POP UP OVERNIGHT. IT ALSO SEEMS THEY APPEAR DURING TIMES OF STRESS OR HORMONAL IMBALANCE. YOU KNOE PERIODS, PREGNANCY MENAPAOSE ETC. TAKE CARE AND PRAYERS.

yes the older I get the worse. I start off in the summer covering up , but then I end up wearing short sleeves and shorts. I wish so much they were not noticeable but what can you do. I use to have the ones that bothered me taken off, but at this point there are to many to decide which one that would be.

Ive noticed it too in myself... Im hankful I havent gotten but 2 small ones on my face.... the big ugly ones are on my tummy and back and chest..maybe a total of 15-20.. so I wear a one piece bathing suit, I never wear shorts cause i have chicken leg so I always wear pants or long sun dresses... I wear tank tops and you can see one of the bumps on my collar bone and people stare but ima bitch and when they do and snicker and comment I look at them and say to them "Cant help i was born this way why dont you take tht up with God and get some manners and respect... BITCH" men have never made fun of me as bad as women.... but like Marah said Dr W in NY is very expensive and i cant afford him either... he wants like 5,500.00 + another 2,800.00 in OR fees so... I can't afford it.. I wish people understood the NF instead of stare,laugh and make comments... but I must not be to bad I have a great guy,a kid and am happy... usually the ones who tease us suffer from much worse than NF... growing up I was always teased for being under weight and short..... and to this day when I ask sales gals for help they always make rude comments like "Heres something tht wld cover your back" or "Maybe you should shop in a childrens store for clothes"... but I walk away and say "Guess Ima have to since this is the store for dinosaurs apparently" Im finally starting to love myself and my guy loves me being under 5 ft tall...

The older I get it seems that I keep getting more and more growths from the top of my head to the bottom of my feet.I haven't been able to wear my wedding band in years.But in the summer I wear shorts and short sleeve tops.I try not to let people's straes bother me.What I want when people get to know me is to see past all the bumps and see Jesus in me.

i see more of them lately too.
It sometimes gets me down, but there is more to life than this
admittedly no one seems to stare or comment, or maybe they have seen me with my ex or fiancee and just do not dare.
my son has nf and i worry for him growing up, i am an adult and can handle it.
i wish we could all just go to dr weinburg, i almost did since i had lived in ny but just decided as of now i do not want to spend the 6grand.
anyways, best wishes to everyone here and the strength to go another day!!

this is to Marah-
I notice in a lot of your post you mention Not enough funds for surgery? Do you have insurance? If not, i urge you to sign up with a group plan like at work. I say group plan because they are more likely to accept you. I had my surgery for a total of $100. That included the hospital visits, doctors visit and all. To me, insuarnce is the best thing someone with NF can have.
Now to give advice to the original question: I know how you feel. I notice i am getting more in the face..There is one under the skin VERY close to my eye it is getting bigger. I look like i have something wrong with me. I too, wear long pants in the summer, but not long sleeves. My dad on the other hand (who has them bad) wears shorts (long, knee length) and short sleeve shirts. Sometimes he goes outside with his shirt off!!!! Yeah, he is awesome.He has soooo many friends. They don't even "see" the NF. Try to surround yourself with positive people. Leave out the negative ones.

bbeauty, we have very good insurance. They have never turned down tumor removal. My problem is with doctors who don't think it's "medically necessary" to remove them. they won't even turn it in to insurance. Last summer I had a bunch under my bra line. I went to a dermatologist who made me pay 3,000 dollars up front to remove them. And he made me sign a form saying I understood it was "cosmetic" surgery and there fore would not be turned into insurance.

Marah,

If you don't mind a trip to Florida, the plastic surgeon that did my ED was completely understanding that it wasn't cosmetic.

My only problem was that the insurance will only cover a small number to be removed.