Walk to raise awareness of neurological disorder ChiariWritten by Matt Liasse | | email@example.com
Three members of Kellie Haupricht’s household have been diagnosed with Chiari malformation, facing 60 of the neurological disorder’s 200 symptoms.
The malformation occurs when the brain descends out of the skull and puts pressure on the spine; some symptoms include severe headaches, neck pain, balance problems, weakness in arms and legs and respiratory problems. Close to 300,000 people are diagnosed with the disorder in the United States, Haupricht said.
Approaching 50 years old, Haupricht considers herself lucky. She was diagnosed three years ago after being incorrectly diagnosed with lupus and a form of multiple sclerosis two different times.
Haupricht suffers “drop attacks,” a symptom of Chiari malformation where she passes out due to her brain stem being so close to the skull, causing her body’s nerve sensations to stop. She has broken bones from falling.
Haupricht said the disease is hard to diagnose because of the wide array of symptoms, so patients often go five or more years before being diagnosed. She works with Conquer Chiari Toledo to bring awareness to the condition, in hopes that might change.
“It’s not rare; a lot of people try to say it’s rare,” Haupricht said. “What is really rare about it is the fact that the majority of doctors, physicians and even neurosurgeons have never heard of it or, if they’ve heard of it, they do not know how to diagnose it properly and they don’t know how to treat it properly.”
Recent studies have shown the disorder is genetic and often affects multiple family members, Haupricht said.
Haupricht’s daughter, Jessica, also has the disorder. The condition she has is known as Chiari Zero (most people have Chiari One), meaning it is being watched but not treated. Haupricht said as Jessica grows older, it could cause more problems.
Haupricht’s son, Nathan, has a more severe case of the disorder. He has had nine brain surgeries related to Chiari malformation after it took 12 years for him to be diagnosed. He missed four consecutive years of school.
“None of his surgeries were done here in the area. We had to travel outside of the area to have proper surgery. If we would’ve allowed the neurosurgeons here to do what they wanted to do at the time, he would not be with us today,” Haupricht said. “One of [Conquer Chiari’s] big goals is to be able to have the surgeons and doctors educated in our area so that our patients are not having to travel outside of the area, or if they do have to have surgery here in Ohio then the surgery is done properly.”
There are no studies showing if life expectancy is affected by the disorder.
“I know, with my experience, the older a patient gets, it’s a very excruciating life. You’re not able to do much. A lot of people end up in wheelchairs or bedridden,” Haupricht said.
Haupricht said the only way to fight Chiari is through surgery to help slow the progression. Because the research is so new, Haupricht said there isn’t any continuity in care.
Conquer Chiari is a “public charity dedicated to improving the experiences and outcomes of Chiari patients through education, awareness and research,” according to a news release. Last year, the Conquer Chiari Research Center was opened at the University of Akron, was first of its kind dedicating all its research to Chiari malformation.
For the fourth year in Toledo, the organization is sponsoring Conquer Chiari Walk Across America, a series of fundraising walks that will occur simultaneously at 61 sites nationwide. The walk is to raise awareness and money for researching Chiari malformation. Last year’s walk raised more than $530,000; 80 percent of the money funded research.
The local walk, coordinated by Haupricht, begins at 11 a.m. Sept. 21 at Monclova Primary School, 8035 Monclova Road; registration begins at 9 a.m. Participants are asked to pre-register online at conquerchiari.org, but it is not required. T-shirts will be provided to those who preregister by Sept. 16 and contribute at least $25.
For more information, contact Haupricht at (419) 822-6049 or Jill Miller at (419) 410-8522 or email at firstname.lastname@example.org. O