Nf1
Apr 27, 2016
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My husband has NF1 and had radiation for an opticus glioma as a child.
we have 3 kids My oldest girl dosent have NF. My middle girl has NF and has just got diagnosed with a large plexi growing from her neck bilateral on Borg side of her spine down to the lower back and out between her ribs. She has lot of backpain and also her tummy is sore. We are waiting to do an MRI of her belly.
my youngest girl also has NF and has a plexi on her eyelid and had surgery to debulk IT. She also has bilateral OG and did chemo 2010-2011 for 79 weeks. And had a recidive 2014 and just finiched a year of chemo again. She has a bit of visionproblems.
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