By Kristina Webb
Palm Beach Post
WWR Article Summary (tl;dr) Jordan Ray is the inventor of the “Limitless Medical Log”, a daily journal that helps people with medical conditions track their symptoms.
Wellington
When Jordan Ray stepped onto the softball field on a sunny April 13, 2015, she had just returned from a week of visiting universities that saw her as a top prospect, a top player and a prime candidate for their teams.
The Wellington resident recently came across a photo on her Instagram account: She stands at her position of third base, her arm extended up as she throws a ball for an out, her eyes locked onto the target of her throw. The image was taken April 7, less than a week before the game that would change her life.
“I didn’t know I would have my life turned completely upside down,” Ray said.
When she hit the field, her mind was on the future she’d seen for herself since elementary school — with no idea of how her life was about to take a terrifying turn that would lead her down a road to entrepreneurship and raising awareness for Chiari malformation, a rare neurological condition.
Ray is working with Wellington as September marks Chiari Malformation Awareness Month. With the support of Vice Mayor Tanya Siskind and village staff, Ray worked with Wellington to light its Village Hall clocktower and memorial fountain purple for September. The Village Council also marked the month with a proclamation.
Today, Ray is an ambitious, driven, 22-year-old entrepreneur with a passion for helping people with chronic conditions.
But five years ago, she was an eager, 17-year-old high school student with an eye toward her future as a college athlete.
Her path changed at that softball game on April 13, 2015. Ray played third base for Palm Beach Central High School, and her team traveled to The Acreage to play against Seminole Ridge High School.
Early in the game, Ray dove for a catch, hyperextended her neck — and blacked out. Later she would be told she was out for just a few seconds.
When she woke up, blinking into the sun, she didn’t recognize the people around her.
As she struggled to sit up and tried to understand what was happening, she had her first ever “pounding migraine,” she said.
“I was telling everybody, ‘I’m fine,’ even though I wasn’t,” Ray said.
She continued to play a few more innings before the opposing team’s third-base coach raised concerns about Ray’s condition.
“The lights were expanding,” she said. “The noise was deafening.” Tears streamed down her face.
Ray was pulled from the game with a suspected concussion. An orthopedic surgeon told her a few days later that she had whiplash.
But Ray knew something else was wrong. The migraines persisted, derailing her life.
About two months later, she consulted with a neurosurgeon who listened to Ray’s symptoms before saying matter of factly, “I think I know what you have.”
“Does it hurt when you sneeze?” he asked. “Do you feel pressure in the back of your head?”
The answer to both of those questions was yes. Ray had excruciating pain when she sneezed, something she had never experienced before. It was like her brain was trying to push its way out of her forehead.
The neurosurgeon ordered a few tests, and before long Ray had her diagnosis: Chiari malformation, a condition most commonly caused by a birth defect, where brain tissue extends down into the spinal canal, potentially blocking the flow of spinal fluid, according to the Mayo Clinic.
The condition affects at least 1 in 1,000 people, according to the National Institutes of Health.
The diagnosis meant the end for Ray’s softball dream.
“I was about to achieve the dream that I set at 9 years old, was to be a college athlete,” she said.
Instead, she found herself discussing treatment options with her doctor. They settled on a surgery known as “Chiari decompression,” where an opening in made in the back of the skull. The surgeon then places a patch over the spot that has been molded to allow spinal fluid to flow more freely.
Ray went under the knife on Dec. 1, 2015. “It was just a normal Tuesday for my friends, walking into school as seniors,” she said.
But for her, it was the day she walked into Palms West Hospital for life-changing surgery.
The procedure was “beautifully done,” Ray said. But four months later, the migraines began to sneak back in, along with her other symptoms.
“In my unlucky case, scar tissue formed at the surgery site, which is now blocking cerebrospinal fluid,” she said.
As Ray struggled with her new reality, she began tracking her symptoms. But while there were smartphone apps and journals for just about everything, she could find nothing that met her needs: One central location to track the effects of a chronic condition from day to day.
So she created it.
Ray invented the Limitless Medical Log, a daily journal that helps people with medical conditions track their symptoms.
“I created the tools I wish I had to manage and to monitor my health,” she said.
There is a weekly log with a pain level chart that allows the user to mark where on a chart of the human body their pain is, along with how bad it is in that place on that day.
Patients then bring the log to their doctors, who can see how pain and other symptoms are progressing, Ray said.
“My mission is to put every patient in the driver’s seat for their health,” she said.
The next step for Limitless: An app, coming soon for Apple and Android devices. It will be free with optional paid upgrades, Ray said.
The app is a more portable way to tote health information, she said. While she uses the log to track her daily symptoms, she plans to switch to the app once it launches.
Limitless has helped Ray and others better coordinate care while tracking the details of their conditions.
“Even missing a little piece can drastically change your treatment,” she said.
The app’s launch is serving as another opportunity for Ray to share her story and draw attention to Chiari malformation.
Earlier this month, she went to Wellington’s Village Hall to watch as the clocktower there was illuminated a vibrant purple, the color representing Chiari malformation awareness. Having the support of the Village Council and her community has been incredible, she said.
“My whole community is behind me, and I want every single Chiari patient and every person with a chronic condition to know they have that support,” she said.
She is working on a book about her journey, and hopes it can inspire others. She also hopes to continue speaking engagements, after delivering her first keynote earlier this year at a chronic illness forum at Palm Beach State College.
In front of about 200 people, Ray shared her struggles and triumphs, calling attention to the need for more support for people who deal day in and day out with pain.
“That’s where I fell in love with sharing my story,” she said.
She maintains the mentality that brought her such acclaim as a high school athlete. Now, though, the coaches and players on her team are her family and doctors.
“I love what I do,” Ray said. “I never thought I would be in the medical field. But here I am.”
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Limitless
For more information and updates about a release date for Jordan Ray’s Limitless app, go to www.limitlessmedicallogs.com.
The hard copy of the Limitless Medical Log is available there for $15.99.
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Chiari malformation
Symptoms of Chiari malformation vary from person to person, and can include headache, neck pain, hearing or balance problems, muscle weakness or numbness, dizziness, difficulty swallowing or speaking, vomiting, ringing or buzzing in the ears, curvature of the spine, insomnia, depression, problems with hand coordination and fine motor skills.
The condition may be diagnosed by a neurologist.
For more information, go to www.conquerchiari.org.
Source: National Institutes of Health
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