Woman diagnosed with rare genetic disorder shares her story to raise awareness

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BROOKLYN -

In honor of Neurofibromatosis Awareness Month, a woman living with the genetic disorder is sharing her story.

Lisa Casale was diagnosed at age 3 with a genetic disorder of the nervous system that causes tumors to grow all over her body. The disorder, Neurofibromatosis affects about one in 3,000 people.

As a teacher, Casale is surrounded by curiosity. Students ask her about the tumors, as she encourages everyone to do.

"Ask me, ask me my name and I'll tell you about Neurofibromatosis," she says.

She has had numerous procedures to remove the tumors, but they come back. Though sometimes painful, they are not contagious, she says -- a fact that does not stop people from assuming otherwise.

"I was shopping and overheard a little kid ask, 'Mommy, what's wrong with that lady?'" she says. "The mother grabbed the child and pulled the child away. I just broke down in tears."

Casale went to her car and cried, she says.

 

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