NF1
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Why NF1 Is Not About the Tumors
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Over the past few days, I had the opportunity to read various Facebook and email comments about children being newly diagnosed with the dreaded Neurofibromatosis disease. I have also spoken with mothers who worry about the effects of this disease. This is certainly understandable. Tumors–one ugly word; and I am not kidding–a very ugly disease. The…
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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 tests; cognitive, physical, neurological, biological, and psycho-educational assessments were performed. We were hopeful for answers.…