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Why Neurofibromatosis Is Still Not About the Tumors
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Today, May 17 is Neurofibromatosis Awareness Day. Not a day to celebrate, but a day to communicate. A day to declare the horrible, ugly symptoms of a disease that makes people prisoners in their own home. A disease that turns…
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Neurofibromatosis: A Very Ugly Disease Which Affects Very Beautiful People
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Back in 1997, my family and I sat inside the neurologists’ office at the Children’s Hospital of Philadelphia (CHOP) and waited patiently for the results of my son’s global medical evaluation. There were tests to order more…