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Chronic Health Conditions Discussion and Support

ChazII

(6,441 posts) Thu Nov 14, 2013, 01:41 AM Nov 2013

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=twitter

My 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.

5 replies

= new reply since forum marked as read

Highlight:

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

(113,844 posts)

1. Poor kiddo. She's got a lot of surgeries ahead, I'm afraid

Reply to ChazII (Original post)

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

(6,441 posts)

2. Tumor could grow faster

Reply to ChazII (Original post)

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.

hedgehog

(36,286 posts)

3. I am awed at your strength.

Reply to ChazII (Original post)

Mon Nov 18, 2013, 09:58 PM

Nov 2013

ChazII

(6,441 posts)

4. Thank you, a sense of humor

Reply to hedgehog (Reply #3)

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.

hedgehog

(36,286 posts)

5. What else can I say, but

Reply to ChazII (Reply #4)

Mon Nov 18, 2013, 10:43 PM

Nov 2013

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