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Girl With Half a face (Neurofibromatosis) (Original Post) ChazII Nov 2013 OP
Poor kiddo. She's got a lot of surgeries ahead, I'm afraid Warpy Nov 2013 #1
Tumor could grow faster ChazII Nov 2013 #2
I am awed at your strength. hedgehog Nov 2013 #3
Thank you, a sense of humor ChazII Nov 2013 #4
What else can I say, but hedgehog Nov 2013 #5

Warpy

(110,913 posts)
1. Poor kiddo. She's got a lot of surgeries ahead, I'm afraid
Thu Nov 14, 2013, 02:52 AM
Nov 2013

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

(6,198 posts)
2. Tumor could grow faster
Thu Nov 14, 2013, 10:46 AM
Nov 2013

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.

ChazII

(6,198 posts)
4. Thank you, a sense of humor
Mon Nov 18, 2013, 10:39 PM
Nov 2013

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.

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