Why Neurofibromatosis Is Still Not About the Tumors

Today, May 17 is Neurofibromatosis Awareness Day. Not a day to celebrate, but a day to communicate. A day to promulgate the horrible, ugly symptoms of a disease that makes people prisoners in their own home. A disease that turns heads while the sufferers must hear the vile insults shouted from across the room. There, I’ve said it. Today is a day to call attention to a disease that not too many people have heard of, […]

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May 17 is World Neurofibromatosis Day

Neurofibromatosis, is a genetic disorder in which benign tumors grow within the nervous system. These tumors could be anywhere in the body, including the brain, and spine but not limited to the feet–ouch! This is a rare, (but not really), disease. Neurofibromatosis may actually only seem “rare” because not many people are aware of its existence. That’s why the month of May is so very important; Neurofibromatosis Awareness Month. Types of Neurofibromatosis (NF1-NF2-Schwannomatosis)  Three levels of this […]

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Why NF1 Is Not About The Tumors

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. The tumors that present themselves with this horrible disease are ugly; visible to the naked eye and so incredibly persistent–not to mention painful! These […]

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