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Girl With Half a face (Neurofibromatosis)
http://www.extratv.com/2013/11/13/sneak-peek-a-heart-wrenching-look-at-the-girl-with-half-a-face/?utm_source=twitterfeed&utm_medium=twitterMy son and I have the same genetic disorder. My son's plexi is not as severe as the girl's but it does cause rude stares.
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Girl With Half a face (Neurofibromatosis) (Original Post)
ChazII
Nov 2013
OP
Warpy
(113,130 posts)1. Poor kiddo. She's got a lot of surgeries ahead, I'm afraid
This one was likely put off until she got her final growth spurt and what she has is not terribly functional any more.
I hope she looks like her best dreams of looking after the operation.
ChazII
(6,320 posts)2. Tumor could grow faster
if surgery is not done at the right time. Plexiforms can grow back more aggressively even though surgery is done to debalk the tumor. The rule of thumb is function over form. In other words, if everything is function then you don't touch it.
My son and many of my cyber friends in the NF community have walked more than a mile in this girl's shoes.
hedgehog
(36,286 posts)3. I am awed at your strength.
ChazII
(6,320 posts)4. Thank you, a sense of humor
and friends help us develop strength.
Since it is a mutation chromosome 17 that cause this disorder we often refer to ourselves as members of the X-Men.
hedgehog
(36,286 posts)5. What else can I say, but