neurofibromatosis cafe

A place to talk about NF, have fun and share.

Questions from Naomi in Japan

bild_027_1151395573.jpgHi Reggie. I am 23 years old and currently living in Japan. Today
was the first time I had ever seen a woman with NF. I was getting
ready to order food from McDonalds, and I noticed that the woman
in front of me. From behind, I hadn’t there was nothing out of the
ordinary, but I soon noticed her enlarged bottom lip and a bit of
sagging to only one side of her face. It was very intriquing to me
and I instantly became very interested to learn more. I was, as
I’m sure most people are, too nervous to “just ask”, as well as
ask in JAPANESE which is my SECOND language and I did not want
anything to get lost in translation. Not knowing very much about
these type of disorders, my first thought was that perhaps she had
some form of facial elephantitus….? My first hit when typing
this into google was an immediate NO. Apparently, doctors had
misdiagnosed people with NF as elephantitus, but indeed they were
mistaken. After I gained the vocabulary of Neuro….wait let me
look up how to spell
it one more time…NeuroFibroMatosis, I googled that and found
your site. I am SO glad that I have “discovered” this little
online treasure, and plan on checking in often to see what updates
have been posted. I have already watched your video on Google, and
would like to educate my more of friends on this fascinating, um,
matosis….??? Hope to hear back from you soon and thank you for
being you!!!

One question. I see alot of women on television who are unhappy
with the way they look and are completely transforming their faces
with cosmetic surgery. How far can one go surgically if one has
neurofibromatosis? How much can be done? And isn’t it dangerous
when it comes down to involving surgical procedures and one’s
face? What have been previous outcomes for those who have
attempted it? Was it better had they just let it be? I was sort of
thinking about this during my train ride home from the Mcdonalds
today…..Thanks again. I’m SO curious!!!

Author : Naomi (IP: , p1023-
E-mail :


September 5, 2007 - Posted by | Medical, neurofibromatosis | , , ,


  1. I have been told by some of my docs that the stress from surgery can cause more tumors to grow, maybe in more vital places, or they can grow back, sometimes there are just to many to have remove, like on my mother, she probally has 100 tumors on her face,
    I have been advise by dr. you should only get them removed if they are causing problems, or if there is something wrong, I just found out about 2 hours ago, that one of my bumps is suspicous for cancer, it has been causing pain and discomfort so I went to the dr. to see about getting it removed, for precautions I had a MRI, it came back as being suspicous, nf is more then just cosmetic, there are a lot of other complications

    Comment by Patricia Stokley | September 5, 2007 | Reply

  2. Patricia, What happens to me when I feel stressed my leg always has more swelling then other times. I also experience more inching where my tumors are on my body. I wonder if anyone else that has a large tumor have the same problems.

    Comment by Reggie Bibbs | September 5, 2007 | Reply

  3. I heard the stress has an effect on nf, sometimes the one on my forhead bothers me, my mother has had one large tumor removed from her back it was in the way of her bra strap and it was giving her a lot of problems getting inflamed but that was before me, she doesnt really talk about it, my mother is from the generation that just don’t talk about things that bother them, so i don’t press her but when she gets stressed she does has problems, mostly in her back.

    Comment by Patricia Stokley | September 5, 2007 | Reply

  4. how do you say sidney in japanese?

    Comment by liz | November 2, 2007 | Reply

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