Unite@night planners hope to raise Chiari awareness
For 18 months, Kim DeAngelo went through a battery of tests and and incorrect diagnoses.
Relief came when she was diagnosed with Chiari malformation.
The Dublin resident will host unite@night in Carriage Place Park, 4900 Sawmill Road, June 29 to raise money and awareness about the disorder she is still struggling with today.
Three years ago, the Indian Run Elementary School teacher was enjoying spring break with her children when she felt the first symptoms of the disorder that causes the lower tips of the brain to slip through the hole in the bottom of the skull and block the flow of fluid.
"When I look back, I can remember everything," DeAngelo said.
"(The kids) were watching Scooby Doo," she said.
"I sat down to send an email and I couldn't see. I was 32, healthy and had two kids."
Her vision came back to a degree, but she couldn't think of words and the right side of her body went numb.
After a visit to the ER and eight hours of testing, some symptoms subsided, although the numbness persisted -- and still does today.
The disorder has kept DeAngleo from returning to work as a teacher.
Over the next few months, DeAngelo experienced more symptoms and was diagnosed with migraines, a common occurance for people with the disorder.
"I didn't find out what it was until 18 months later," DeAngelo said.
"First, there were a lot of migraine diagnoses," she said. "I was on many different medications."
DeAngelo's first brain surgery was in 2010. Cancer was suspected, but soon ruled out.
Symptoms got worse and DeAngelo went through more tests. She had to rely on a cane or wheelchair to get around because her balance was so bad she often fell down.
"I was tested for every autoimmune disorder under the sun," she said.
DeAngelo was finally diagnosed with Chiari malformation and went to a special Milwaukee center in August 2011.
Before her second brain surgery, DeAngelo had lost most of her vision, experienced numbness and couldn't hear out of her right ear.
During surgery, doctors removed a part of her skull and brain, while adding tissue to part of the brain to help it heal and function.
"When I woke up in the ICU, I could already tell my vision was better," she said.
Symptoms began to disappear as DeAngelo recovered from surgery.
She was told she might not have to have decompression surgery every four years, as some Chiari malformation sufferers do.
A car accident in February caused a head injury and brought back symptoms.
It also made her realize the importance of this year's unite@night event.
"When I hosted the walk last year, I loved that I was healthy enough to do it," she said.
"The accident put a different spin on it this year," DeAngelo said. "I've remembered just how bad some of the symptoms are. I've been reliving it the past few months."
Unite@night begins at 6 p.m. June 29 with registration.
The walk starts at 7:30 p.m. and is free. Donations and raffles will raise money for research and education.
Face painting, balloons, crafts and games will be available to children while others complete a one-mile walk around Carriage Place Park.
"People will be using canes, wheelchairs (and) walkers," DeAngelo said, "but no one will end the walk alone."
The walk will also serve as a chance for people with Chiari malformation and related illnesses to get together.
"It's really a horrible, debilitating disorder that doesn't have a cure," DeAngelo said.
"The most important piece is the people. It's about getting people together, regardless of how they get across the finish line."
DeAngelo hopes to soon start a local Chiari chapter that will work toward support and education about the disorder.
"I've taken it upon myself to educate others about (Chiari)," DeAngelo said. "It's highly misunderstood and tremendously misdiagnosed."
To register or get more information about the event, look online at unitenight.kintera.org/ Columbus.