ICYMI: Florida Clock Tower Lights Purple for Chiari Malformation Awareness

by Lauren Taylor from In The Cloud Copy

A local Florida teenager has inspired her whole city after a sudden diagnosis with a serious neurological condition: Chiari malformation. Jordan Ray was an average teenage girl in 2015, excelling at softball. Suddenly, life as she knew it changed drastically. During a game, Ray experienced intense head, back, and neck pain and lost consciousness. She suddenly did not recognize those around her. This eventually led doctors to a diagnosis she never saw coming.

What is Chiari Malformation?

A Chiari malformation is a structural defect in the part of the brain called the cerebellum. This part of the brain is responsible for controlling balance. With this condition, the cerebellum pushes down through a hole in the bottom of the skull called a foramen magnum. While some people will never have symptoms and may not ever even know they have the condition, others will experience symptoms and require treatment.

Symptoms of Chiari malformation vary from patient to patient. Symptoms may not show up until late childhood or even into the teen years and beyond. Some common signs and symptoms that a patient may experience include headaches, balance issues, vision problems, dizziness, trouble swallowing, poor hand coordination, neck pain, and numbness and tingling in the hands and feet.

Treatment for a Chiari malformation depends on the severity of symptoms. For patients with no symptoms, doctors will typically recommend regular follow-up MRIs to check for any changes to the condition. For patients with symptoms, a surgery called a posterior fossa decompression is usually recommended. This surgery works by creating additional space for the cerebellum and decreasing pressure on the spinal cord, thus alleviating symptoms. Some patients are advised to avoid certain sports and activities if they have a Chiari malformation.

Wellington, Florida Turns Purple for Awareness

After that life changing day in 2015, Jordan Ray never played softball again but wanted to continue raising awareness for the condition she was hit with so suddenly. Unsure where to start, she went to her town’s vice mayor, Tanya Siskind. Ray wanted to raise awareness for Chari malformation in the month of September, which is Chiari Malformation Awareness Month. They have started by lighting the clock tower in their town of Wellington, FL purple for the month to help raise awareness. They also had plans to hold a Chiari awareness walk, but unfortunately those plans have been put on hold due to COVID-19. Siskind has always been in awe of the girl she met and is happy to help raise awareness throughout their town. Jordan Ray feels her town is behind her every time she sees the clock tower illuminated purple during the month of September.

Not only has Ray worked to raise awareness for her condition in her own hometown, she is helping those beyond her town through the development of the Limitless Medical Log, a product she developed to help herself and others suffering from chronic conditions. The log is a 52-week planner that has human body charts and logs to help patients accurately organize and log their symptoms and health for their healthcare providers’ awareness, as well as their own. Ray took what many may have seen as a life limiting diagnosis and turned it into an opportunity for success.

Learn more about Jordan’s story here.

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