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WOODTV.com & WOOD TV8: Grand Rapids news, weather, sports and video | Treatment of rare condition will cause woman to go deaf
Researchers may be coming close to the cure for Neurofibromatosis (NF), a disease that is about to drastically change a Muskegon woman's life forever.
It's a rare condition but it's thousands across the country have it, affecting each patient differently.
The disease is life changing and can be fatal. Those who suffer get tumors that don't stop growing.
"Patients who have neurofibromatosis can develop these tumors. They're not cancerous tumors, they don't spread through the body and things like that, but they do grow in one spot and cause problems," said Dr. Al Cornelius of Spectrum Health, an NF researcher.
Those problems are major for Jessica Stone. Her condition started with a small tumor on her finger when she was seven years old. She wasn't diagnosed with NF until she was 15.
She has now had more than 20 surgeries and is preparing for another one.
"I've been dealt some really bad cards. But, hey, I'm not making a card house out of it," she said.
She is optimistic and so is Dr. Cornelius.
"This is a trial where we're trying to shrink these tumors down by starving their blood supply," he said.
Cornelius is preparing for a clinical trial that will take place in Grand Rapids at the DeVos Children's Hospital. He's hoping that his findings will provide answers and solutions for the 100,000 Americans who suffer from the condition and says so far results are looking promising.
"These are people who suffer quietly," he said, "I'm hoping this will make a big difference in their quality of life."
Jessica's surgery is next month. It may be the most crucial of them all because when she comes out she'll be changed forever.
"I'm getting ready for a surgery on the right side to remove the other acoustic neuroma and it will result in me being deaf," she said.
After the surgery she won't be able to hear her favorite singer, Matthew Nathanson, ever again but one of the last time she hears him won't be forgettable.
He'll be here to meet her Thursday.
She says losing her hearing will be hard but it won't slow her down.
"I'll miss my sister calling me on the phone, or my brother calling me," she said, "I start to tear up every time I think about it."
And it won't stop her from "listening" to Matthew Nathanson.
"I'll still be able to feel the beat. So, I'll just turn up the bass really loud."
Researchers may be coming close to the cure for Neurofibromatosis (NF), a disease that is about to drastically change a Muskegon woman's life forever.
It's a rare condition but it's thousands across the country have it, affecting each patient differently.
The disease is life changing and can be fatal. Those who suffer get tumors that don't stop growing.
"Patients who have neurofibromatosis can develop these tumors. They're not cancerous tumors, they don't spread through the body and things like that, but they do grow in one spot and cause problems," said Dr. Al Cornelius of Spectrum Health, an NF researcher.
Those problems are major for Jessica Stone. Her condition started with a small tumor on her finger when she was seven years old. She wasn't diagnosed with NF until she was 15.
She has now had more than 20 surgeries and is preparing for another one.
"I've been dealt some really bad cards. But, hey, I'm not making a card house out of it," she said.
She is optimistic and so is Dr. Cornelius.
"This is a trial where we're trying to shrink these tumors down by starving their blood supply," he said.
Cornelius is preparing for a clinical trial that will take place in Grand Rapids at the DeVos Children's Hospital. He's hoping that his findings will provide answers and solutions for the 100,000 Americans who suffer from the condition and says so far results are looking promising.
"These are people who suffer quietly," he said, "I'm hoping this will make a big difference in their quality of life."
Jessica's surgery is next month. It may be the most crucial of them all because when she comes out she'll be changed forever.
"I'm getting ready for a surgery on the right side to remove the other acoustic neuroma and it will result in me being deaf," she said.
After the surgery she won't be able to hear her favorite singer, Matthew Nathanson, ever again but one of the last time she hears him won't be forgettable.
He'll be here to meet her Thursday.
She says losing her hearing will be hard but it won't slow her down.
"I'll miss my sister calling me on the phone, or my brother calling me," she said, "I start to tear up every time I think about it."
And it won't stop her from "listening" to Matthew Nathanson.
"I'll still be able to feel the beat. So, I'll just turn up the bass really loud."