Neurofibromatosis
-
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 declare the horrible, ugly symptoms of a disease that makes people prisoners in their own home. A disease that turns…
-
May 2024 Disability Awareness Information
.
The month of May has great opportunities to show support for people who suffer from a severe neurological and disfiguring disease. We need a cure. Please help to #EndNF. May is Neurofibromatosis Awareness Month May 17 is Neurofibromatosis Awareness Day
-
Neurofibromatosis: A Very Ugly Disease Which Affects Very Beautiful People
.
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…
-
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….
-
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…