Medical Edge: Neurofibromatosis

Posted at: 01/15/2013 5:21 PM
Updated at: 01/15/2013 7:22 PM
By: Ellery McCardle

(ABC 6 NEWS) -- A teenager we're about to introduce you to is battling a serious disease genetic condition that causes her body to grow tumors throughout her body. But through it all she inspires thousands of people to come together and raise money to help not herself, but others.

"It's been a hard road," said Jeneece Edroff.

She had endured more in her 18 years than most adults experience in a lifetime.

"It's uncomfortable. Painful," said Edroff.

She has a condition called neurofibromatosis. It causes benign tumors to form along the nerves in her body.

"In my life I've had 15 surgeries," said Edroff.

She lives in Vancouver Island in Canada and has battled this disease since she was 3-years-old.

A charity organization there paid for some of her medical care. A few years later, Edroff wanted to give back. She wanted to help other kids struggling with disease.

"I started a penny drive in my school. I raised $164 and I'm like 'that's not enough,'" said Edroff.

She set a goal of one million dollars. No doubt a big goal for anyone to collect.

"In my whole life I've raised 8 million dollars," said Edroff.

Quite an accomplishment, which she was honored for by government officials in British Columbia.

As Edroff works to better the lives of others, her condition advances.

"My leg is getting worse, it's been uncomfortable, painful," said Edroff.

Doctors in Canada can no longer help her and she faces losing her ability to walk.

Edroff hoped to go to Mayo Clinic, but she couldn't afford it. That changed when a Good Samaritan saw her story and offered to fly her in a private jet to Mayo Clinic.

"It's a very very tough disease, but she's a strong lady," said Dr. Dusica Babovic-Vuksanovic, who leads a team of experts caring for Edroff.

"She has a tumor which is affecting one of larger nerves in the body and this is why she has pain," said Dr. Babovich-Vuksanovic.

After many tests, Edroff has opted for another surgery to try to remove the tumor. That's not easy because these tumors grow fibers that spread into tissue and around nerves. But Edroff is determined to get better so she can continue to make the lives of others better too.

"My main dream? I want to become a child life specialist to work with kids and children in hospitals," said Edroff.

Neurofibromatosis is a lifelong disease. It tends to flare in young adulthood. Edroff says she won't let the condition stop her from reaching her goals of helping others.

For more information on the disease, head to our website and click on Medical edge.