When the diagnosis came for Jordan Ray, it was one she hadn’t heard before: Chiari malformation.
But what the Wellington resident did with that diagnosis is launch a mission to help others with chronic conditions by creating a detailed medical journal.
Ray was 17 and one of the star players on Palm Beach Central High School’s softball team when she was injured during a district game, blacked out and began suffering debilitating migraines and other symptoms of Chiari malformation, a birth defect that affects at least 1 in 1,000 people, according to the National Institutes of Health.
Chiari malformation is a condition in which brain tissue extends into the spinal canal, pinching the spinal cord and potentially blocking the flow of spinal fluid.
People with Chiari malformation can suffer hearing and balance issues, dizzy spells, tinnitus, chronic migraines, hand-eye coordination difficulties and neck pain.
It’s a condition so common but underdiagnosed that I’m sure in reaching out to me, Ray didn’t expect my mother and me to also have Chiari malformation.
Having a chronic condition can affect every aspect of your life. Before that fateful softball game — a week before her 18th birthday — Ray hadn’t experienced any symptoms. But she hyperextended her neck while sliding for a play-making bunt, setting off a chain of events that would lead to her eventual diagnosis and surgery.
“If this wouldn’t have happened, I wouldn’t be where I am now,” the now 20-year-old Ray said from her home office in The Isles development.
The Palm Beach State College student runs her own company, Limitless Medical Logs, which launched recently. Copies of the journal, which goes for $49.99, already can be found in local doctor’s offices and is online at www.limitlessmedicallogs.com.
Ray’s multiple doctor’s visits inspired her to create the journal for people with chronic conditions.
Ray didn’t consult with a doctor in designing the log, but she didn’t need to. She drew on her own experiences of having to answer detailed questions about her pain levels and symptoms to develop weekly logs and helpful introductory pages, including medical history and prescription logs.
All of which have impressed the doctors to whom she’s presented the log so far. “I brought it to my neurologist and his jaw dropped,” she said.
She’s not threatened by smartphone apps on the market that perform similar medical-tracking tasks. There’s something to be said for having your day-to-day symptoms easily at hand, even for a younger crowd some might think would be drawn more toward technology. “I’m 20 and I use this,” she said, flipping through the spiral-bound book. “… I like opening it, turning the pages and looking to see what my symptoms have been.”
She looks forward to her goal of having Limitless Medical Logs in every doctor’s office, hospital and clinic.
Ray said despite surgery, her Chiari malformation still slows her down. “I’ve noticed with Chiari, some days I can’t give my full potential. … Those days it’s just horrible.”
Getting her business started wasn’t easy, she said, because of those bad days. But she stayed positive.
“I was building this product and company that I know will help so many people,” she said. “I would wake up every morning and remember my purpose of why I started to begin with: I know I will be making a huge difference in people’s lives.”