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neurofibromatosis/psuedoarthrosis

Joanne Bartalis

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I have a 3 year old daughter who was born with a broken leg and we found out that she has psuedoarthrosis which is a condition that doesn't allow the bone to heal as there is a tumor on the bone after several operations and a new treatment there looks like that it is finally healed but they keep mentioning neurofibromatosis as this condition that she has is part of this disease but so far she has no other symptoms. Could anyone tell me if she has NF or is it as the doctors say if she gets to 5 without any other symptoms then she willn't get any or are they being overly optermistic.I am extremely concerned and confused and I am getting very little information from the doctors.

 


   
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