By Christopher Manson
Eleven years ago, Marion Gipson was diagnosed with Chiari malformation type 1. “I had it all my life, but didn’t know,” she says. “It started with headaches every day. No matter what I took, they wouldn’t go away. The doctors told me I had migraines, but I forced the issue and got an MRI which led to my diagnosis.”
Chiari malformation is a condition in which brain tissue extends into the spinal canal. According to mayoclinic.org, this occurs when “part of the skull is misshapen or smaller than is typical. The skull presses on the brain and forces it downward.” It is not a common condition, and increased use of imaging tests has led to more diagnoses in recent years.
This year, Gipson is organizing her third Conquer Chiari Walk. (She also serves on a special advisory board.) The event is set for Saturday, Sept. 20, at PROPS in Freeport’s Hammock Bay. Registration is from 8 to 9 a.m., and the walk starts at 9:30. The walk will feature vendors, food trucks, a silent auction and more. Additional performers and speakers will volunteer their time.
“Alaqua Animal Refuge is bringing some of their puppies out for the kids to enjoy,” says Gipson. “The dogs are very therapeutic for us, and I’m really looking forward to it.” The Hammock Bay Line Dancers are slated to appear as well. “It’s a big deal!”
Gipson’s goal is to bring awareness to Chiari malformation. She says the medical community “has got kind of a grasp on it now. Once I put it out there, a lot of people let me know that they or their kids have it.” She formed a support group for “Chiarians” and people with related conditions.
She meets people with Chiari malformation every month and is planning for other meet and greet type events in the future. “I’ve put together Purple Night Out to bring the Chiarians in this area (together). We have a pot luck, and everyone wears purple” which is to Chiari what pink is to breast cancer.
For years, Gipson says she “didn’t have a clue what was going on.” She kept having symptoms, and her doctors kept dispensing medication. “My chiropractor actually told me what was happening to me and sent me to a neurologist,” she says. The neurologist told Gipson she would need to undergo brain decompression surgery, but she ended up not having the procedure.
“My issues are mild,” says Gipson. “I’m able to function and drive around the area. There are limitations. I can’t lift over 10 pounds, do anything strenuous, or stand or sit for long periods of time, because of the pressure of the brain tissue on the spine. I have to be very cautious.”
She and her husband live in Freeport and work as commercial loan brokers. Gipson is the chairperson for the Freeport Merchants Association, and she’s a substitute teacher. The couple have lived here for over a decade. “My husband was working at Hurlburt Field. I came down to visit and wanted to retire here.”
Last year’s Conquer Chiari Walk drew 50 participants, some with painted faces and purple tutus. “It’s really growing, and people come together.” All proceeds from the event go to the Conquer Chiari Foundation for research and education. “There is no cure for this condition, and funding is really needed for research,” says Gipson.
“I want to continue to bring awareness. If people are having headaches and their doctors are calling it migraines, they need to be advocates for their own bodies and make sure it’s not Chiari malformation or something related.”
Discover more at walk.conquerchiari.org
