Three and a half years ago, Kylee Bliss, now 18, saw herself sidelined after suffering two concussions within two months while playing basketball. The once-sociable and athletic honors student went from easily acing tests to struggling to earn Cs, opting against spending time with friends in favor of rest, and retiring from organized sports for good.
“Everything was taken away from me, and I didn’t know what to do,” Bliss, who was diagnosed with post-concussive syndrome (PCS) during her sophomore year of high school, told FoxNews.com.
According to the Mayo Clinic, PCS— a condition marked by symptoms like dizziness and headaches, and associated with sports injuries— is the result of concussion, a mild traumatic brain injury that usually occurs after a blow to the head.
Bliss, of Overland Park, Kansas, a suburb of Kansas City, took a liking to basketball at age 7 and hadn’t left the court since. As she grew restless to play again after her head injuries— coping with noise sensitivity, depression and anxiety— she eventually found solace in striving to help others avoid a similar fate by starting the HeadsUp Foundation for PCS. The organization aims to raise awareness and teach others about the condition.
“I saw a sparkle in her eyes for the first time since the first concussion,” Kylee’s mother, Ginger Bliss, told FoxNews.com of her daughter’s decision to start the HeadsUp Foundation for PCS.
Kylee and Ginger said the HeadsUp Foundation for PCS has raised more than $20,000 since its inception in July 2013. But even as the foundation grows, Bliss continues to cope with PCS symptoms, like recurrent headaches and vision and learning problems.
Downplaying the signs
Experts agree that diagnosing the seriousness of concussions is challenging because clinicians rely heavily on self-reporting from the patient. But a concussion can cloud a patient’s judgment, which can affect diagnosis, treatment and self-care— the latter of which Bliss and her mother believe has played a role in the persistence of her PCS.
"I can tell you it’s very tricky to diagnose concussions," Dr. Beth McQuiston, a board-certified neurologist and medical director at Abbott, a pharmaceuticals and health care products company, told FoxNews.com. Abbott is developing a portable blood test to detect concussion biomarkers using its i-STAT device. While an objective test for concussions, CT scans can produce inconsistent results. Common concussion symptoms are also similar to everyday discomforts— like a bad night’s sleep, dehydration or a common headache— which can further complicate making a diagnosis, said McQuiston, who hasn’t treated Bliss.
The other issue, she said, is a lack of awareness for the importance of brain rest after concussion. Brain rest can mean different things for different concussion patients based on their symptoms, but it can include limiting exposure to sound, scaling back on schoolwork and getting plenty of sleep.
In November 2011, Bliss’s doctor recommended brain rest after she suffered her first concussion on the first day of basketball tryouts. Bliss had high hopes for becoming point guard on the varsity team, a vacant spot at the time, but halfway through drills she ran into another player, the back of whose head collided with Bliss’s forehead. The team continued to play, and no one thought anything was wrong until other players noticed Bliss wandering aimlessly with a dazed look in the locker room after tryouts. When a trainer asked Bliss a series of simple questions to test for concussive symptoms, she couldn’t answer anything.
The next day, Bliss’s father, Matt Bliss, took her to the doctor, who diagnosed her with a concussion.
Kylee begged to return to school the following week, and her parents capitulated Wednesday.
“Not really understanding and not having an explanation of what any of the potential long-term damage could be, we really just listened to what she was saying,” Ginger said.
They agreed she could attend basketball tryouts but not participate. Bliss’s coach assured her she’d have a spot when she was healed, but he encouraged her to rest in the meantime.
Bliss continued to feel badly— one day, forgetting why she’d left her classroom until a classmate came to fetch her from the hall 30 minutes later— but she continued to go to school. As her team began playing without Bliss, she grew finicky, eager to resume playing.
Bliss’s parents hoped the winter break from classes would do her good. A visit to her primary care physician offered hope: Bliss told him she was feeling better, so he cleared her to return to basketball practice after the holiday break.
She was happy to be back with her team, but on Jan. 19, 2012, during the start of the fourth quarter of her third game back, Bliss and an opponent began fighting over a loose ball— not an uncommon thing for Bliss, whose mother described her as a “scrappy” player. Bliss fell, hitting the back of her head to the floor and taking the other player’s elbow to her nose. The blow came right after Bliss made a three-pointer at nearly half court to tie the game.
Despite feeling disoriented, Bliss ended up finishing the game, which her team lost.
When she emerged from the locker room sobbing, Ginger knew something was off.
“That was not like her, and I couldn’t figure out what was wrong,” Ginger said. “But at that point, she knew she had had a second concussion.”
Scores for her final exams, which she received after returning to the court, would reveal lingering damage from her first concussion yet before her second. Bliss’s teachers had allowed her to delay testing until after the holidays.
“I got a 12 percent on one [of the tests], and the highest [score] I got was a 30 percent,” Kylee said.
A visit to the doctor after the second blow to her head would confirm the diagnosis with a CT scan and an MRI, plus an eye and balance test: Bliss had suffered a second concussion.
Making a change
Bliss took two weeks off from school, during which she struggled to sleep and did not fully adhere to brain rest. When she returned to school, she was able to complete only three classes that semester— going from taking honors courses to being placed in special education with an Individualized Education Program (IEP). Seeing a sports psychologist for neurological testing helped enable her to return to a full schedule of classes by her senior year, when she took an additional online course each semester to graduate with her class on time.
About a year after her injuries, Bliss began doing physical therapy for neck pain as well as speech therapy, and she underwent more physical therapy a year after that when her pain didn’t subside.
Dr. Michael Rippee, assistant professor of neurology at the University of Kansas, who also treated Bliss following her concussion, said her persistent PCS isn’t extraordinary in and of itself but that she belongs to a minority of concussion patients.
According to the Mayo Clinic, loss of consciousness isn’t required for concussion or PCS, nor has there been any proven link between the severity of the head blow and the likelihood of PCS. Typically, symptoms subside after three months but can persist for a year or longer, as was true for Bliss.
“Kylee’s story is unique as a cautionary tale— as the athlete who says they’re better, but they’re not,” Rippee told FoxNews.com.
Studies have also suggested that, compared to men, women have more PCS symptoms that are more persistent. However, the discrepancy may be due to the fact that women are generally more likely to seek medical care than men, researchers say.
Raising awareness of PCS
As part of vestibular therapy, Bliss and her doctor would go on walks on a mountain bike trail, which Bliss found challenging but fun.
“We got on the conversation of doing a run, and I said, ‘The only way I can make this better— my silver lining— is [by] making a foundation that can help other people, raise awareness and prevent people from going through what I went through,” Bliss recalled thinking.
To kick off the foundation, Bliss came up with the idea of hosting a trail run with each rock, root or tree on the course meant to symbolize obstacles that PCS patients encounter on a daily basis.
The Blisses turned to a friend who is an attorney to learn about bylaws and incorporation, as well as online resources, to figure out how to start the foundation. Following the inception of the HeadsUp Foundation for PCS in July 2013, Kylee and Ginger began circulating sponsorship letters to spread the word about their first 10K trail run, which they hosted the following November, along with a 5K walk and run on regular pavement. About 110 people attended the first event, for which the Blisses charged a $25 registration fee.
“It was very rewarding, I think, and I kind of saw that this can be my way to help people,” Kylee said. “I think everyone knows someone who has had a concussion whether it’s diagnosed or not, but if they don’t have someone, they can still spread that message.”
The Blisses hosted the run again in 2014, and since starting the foundation Kylee has received numerous honors and spoken at conferences including the Brain Injury Association of Missouri and the Brain Injury Association of Kansas and Greater Kansas City conference, Sports Concussions: Facts, Fallacies and New Frontiers, for athletic trainers and coaches. She was also selected to serve as one of the national Student Ambassadors for the National Council on Youth Sports Safety Protecting Athletes in Sports Safety (PASS) initiative, and as a student ambassador for the national tour launch of the Atlanta Community Huddle on Concussion in Atlanta in January 2015.
So far, funds raised from the HeadsUp for PCS Foundation have benefited research at the Center for Concussion Management at the University of Kansas, which is studying whether a ketogenic diet may aid in brain recovery after concussion.
Today, Bliss is an incoming sophomore at the University of Kansas, but good grades still don’t come easy to her like they used to. During her freshman year, she struggled in chemistry due to vision and retention issues, so this summer she is undergoing vision rehabilitation four times a week. Her six-week evaluation showed signs of improvement, and she now uses prism glasses to see symbols correctly after not being able to do so for over three years. When her college courses resume in the fall, Bliss won’t be able to continue therapy but will use a computer program to keep her on track.
Since her concussions, Bliss’s pain tolerance has increased, so she’s gotten used to recurrent headaches. She takes Trazadone to help her sleep, Sertaline for anxiety— in loud or visually stimulating environments— and Concerta to aid in focus.
This fall, for her foundation, Bliss plans to host an educational and awareness event in lieu of the trail run. She’s reaching out to physicians, professional athletes and coaches to sit on a panel and discuss the challenges in diagnosing concussion, symptoms of PCS, and the importance of brain rest following head injury.
“Right now, I want to see what the interest is in the educational event and how It turns out— if it’s something we want to continue doing, or if we need to pull back on that and think of something else we can do that will have the same impact,” Bliss said.
Ginger said she hopes the educational event can help raise awareness among student athletes and parents alike.
“For the majority of people, their brain heals, and they’re fine,” Ginger said. “[Kylee has] been one of those exceptions where it’s had a very detrimental impact. I wish I would have known to understand what brain rest was— to have her get mad at me if I took away her phone. I didn’t do everything I could as a parent to give her the optimal chance for recovery, but it wasn’t explained to me in those terms.”