Woman spearheads Chiari fundraiser
By FLORI MEEKS
Severine Boehm-Lippert doesn't really have good days when it comes to her health.
As one of approximately 300,000 people in this country with a neurological disorder known as Chiari malformation, she almost always is in pain.
I have good bad days and bad bad days," the 38-year-old Bayview resident said. It doesn't show with most Chiari people. We put on a fake smile."
When someone has a Chiari malformation, the lower part of the brain's cerebellum dips into the upper spinal canal. How far these cerebellar tonsils extend varies from person to person.
But in many cases, the malformation results in constant headaches.
Some patients also experience double or blurred vision, involuntary eye movements, balance problems, vertigo or dizziness.
Boehm-Lippert hasn't talked much about her disorder until recently. But this summer she became a local spokesperson of sorts about the disorder while she organizes greater Houston's first Conquer Chiari Walk Across America event.
The walk will take place Saturday at the Chester L. Davis Sportsplex, 1251 League City Parkway, League City.
Registration will begin at 8 a.m., and the walk will get under way at 9 a.m.
There are no requirements for distance or for donations, and participation is free.
Boehm-Lippert hopes some people will choose to make donations to support Chiari research.
Even more importantly, she wants more people will learn about the disorder.
A personal journey
Boehm-Lippert had never heard of the disorder until she was diagnosed in 2005.
I had been battling really, really bad headaches and neck pain since 1998," she said.
For years, doctors said she was suffering from migraines.
But in 2005, the pain was accompanied by changes in her vision, and her feet started falling asleep.
Boehm-Lippert went to see a chiropractor, who ordered an MRI of her neck.
That test didn't provide any answers, but the limited view of her brain it captured showed something was wrong.
She went back for a second MRI, this time of her brain, and the Chiari malformation was detected.
There is no cure, but a many with the disorder opt for brain surgery to alleviate the symptoms. About 80 percent of those who have the surgery get some kind of relief.
That was the route Boehm-Lippert chose.
In January 2007, surgeons removed sections of Boehm-Lippert's C1 and C2 vertebrae at UTMB Galveston.
I went in with good spirits," Boehm-Lippert said. I thought it was going to be a miracle. I thought everything would be erased: the pain and everything it erases from my life."
She did experience relief for about six months.
Then the headaches returned, and since then they've been gradually increasing in severity.
She has the option of taking pain medication, but wants to avoid it if possible. Many other patients make the same choice, she said, especially women.
We work; we go to school; we're moms. We can't go around doped up."
After her symptoms started returning, Boehm-Lippert discovered the Chiari and Syringomyelia Education Foundation, which strives to improve the lives of people with Chiari and another neurological disorder, syringomyelia.
She didn't have a pain-free future, but she had a new source of support from people who understood exactly what she was going through.
It's like having another family," she said.
It's this organization that holds The Conquer Chiari Walk Across America, which takes place on the same day each year in more than 30 cities across the U.S. to raise Chiari awareness and research dollars.
Boehm-Lippert first heard about the walks last year. Plano and San Antonio were the only cities in Texas hosting them.
I thought, `It's crazy no one's doing one in Houston,'" Boehm-Lippert said. We live in the one of the biggest medical cities in the United States.
I said, `It may be hard for me to do, but I'm going to get this together.'"
As of Aug. 30, more than 100 people had signed up for the local event. Registration will be open through the morning of event.
Longtime friend Stephanie Hogue said she is in awe of what Boehm-Lippert is doing. I think she's amazing; I actually think this is her calling."
Hogue, a La Porte resident, said she knows her friend has days she can't function, but that in most cases, Boehm-Lippert plows forward with life. She is a wonderful wife, mother and friend."
Boehm-Lippert sees the event as a great way to create connections among Houstonians touched by this disorder. I'm hoping after the walk I can form a local support group," she said.
Aside from the foundation, Boehm-Lippert tries to immerse herself in life.
She is studying business and communications at College of the Mainland.
She and husband Darin are very involved in the lives of their children, Ian Boehm, 12, and Kelsey Lippert, 15.
For more information, visit www.conquerchiari.org.
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