Chesterfield Woman Raises Awareness About Neurofibromatosis - 8NEWS - WRIC | News Where You Live

Chesterfield Woman Raises Awareness About Neurofibromatosis

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An estimated 400 people in the Richmond area have a rare genetic disorder called Neurofibromatosis (NF), but only a handful are getting the proper treatment. It's why Connie Sorman is sharing her story. An estimated 400 people in the Richmond area have a rare genetic disorder called Neurofibromatosis (NF), but only a handful are getting the proper treatment. It's why Connie Sorman is sharing her story.
RICHMOND, Va. (WRIC) - An estimated 400 people in the Richmond area have a rare genetic disorder called Neurofibromatosis (NF), but only a handful are getting the proper treatment. It's why Connie Sorman is sharing her story.

"Just imagine being the mother of a 6-month-old child and hearing a word like Neurofibromatosis for the first time ever, then being told there's no cure and no treatments," she said.

Sorman's now 16-year-old son Jesse was born with one of the three types of NF. The disease is characterized by tumors growing along the body's nerve pathways. The first signs are café-au-lait spots, which resemble birth marks. In many cases, Sorman says patients are only ever treated for the conditions that result from NF.

"It can cause deafness, blindness, bone abnormalities, learning disabilities and even cancer," she said.

Sorman is the President of the Children's Tumor Foundation, Virginia Chapter. She's part of the tight-knit group reaching out to other patients to get them enrolled in a registry that's monitoring symptoms and working towards a cure. Sorman says there's power in numbers in this fight against an under-recognized, under-diagnosed disease.

"This is why people like me focus our energies on raising awareness and creating community support and really getting the word out about NF," she said.

The Children's Tumor Foundation, Virginia Chapter is holding an NF Awareness Night at The Diamond this Saturday, May 24. The game starts at 6 p.m. Tickets are $7 and money raised will go towards research. For more information about purchasing the NF Night tickets, email Cure4NF@gmail.com.



Copyright 2014 by Young Broadcasting of Richmond

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