For five years, Maureen Schorr endured extreme headaches that eluded a cause.
The former Huntley resident was prescribed painkillers, got an MRI and even went to physical therapy, all to no avail.
On top of the headaches, she sometimes would fall down without warning.
It was only after a second MRI that she finally was diagnosed with Chiari malformation, a serious neurological disorder in which the bottom part of the brain crowds the spinal cord, creating pressure on the brain and the spine. It’s something people are born with, but sometimes symptoms don’t appear until they reach their early 30s.
“Chiari is a condition that you live with your entire life,” explained Schorr, whose symptoms began when she was 34. “Surgery and medication will help and can stop the progression of the symptoms, but it never goes away.”
In addition to headaches, Chiari malformation also can cause balance problems, pain and weakness in the arms and legs, as well as trouble speaking and swallowing.
Untreated, the condition can be fatal.
Schorr underwent surgery to relieve the pressure on her brain, and she was “almost headache-free for a year.” Yet, the symptoms returned, and another surgery remains a possibility in the future.
“The choice here is to let Chiari control me or for me to control it,” she said. “I refuse to let this condition win, so I fight every day to live a normal life. Don’t get me wrong, some days Chiari wins and I have to just take a day off from life, but for the most part, I control Chiari.”
One way she does that is to try to help others who also are living with the condition.
She, along with Brittany Kelly, Christy Markle and Markle’s daughter, Emily, have organized the Conquer Chiari Walk Across America for the Chicago region. Similar walks will take place at 60 other sites in 39 states.
Proceeds from the 5K walk will be used for Chiari research, education and awareness programs.
Registration begins at 9 a.m. with the walk starting at 10 a.m. Saturday at Carl Hansen Woods (Grove 1), along Route 59 between Shoe Factory Road and Golf Road in Hoffman Estates.
For information, to register as a walker or to sponsor a walker, contact Schorr at 847-308-7058 or ms01211969@gmail.com or Kelly at 630-606-0538 or brittanyccwaa@gmail.com or Markle at 847-602-2720 or cmcc3@sbcglobal.net. Or you can visit www.conquerchiari.org.
At the walk, which is expected to draw more than 300 walkers and raise more than $20,000, there will be raffle prizes, a silent auction for items including a signed Chicago Bears Brian Urlacher jersey, food and music.
A couple of people with Chiari are expected to speak, and a networking tent will provide information about the disorder.
All of this is designed to bring awareness to a little-known condition that affects 300,000 people in the United States. It also represents another victory in Schorr’s personal battle with Chiari.
“Organizing this walk is one way I win,” Schorr said, “And I feel it is so important to do this for all the people living with Chiari.”
• Joan Oliver is the assistant news editor for the Northwest Herald. She can be reached at 815-526-4552 or by email at joliver@shawmedia.com.