For years, Daisy Kent endured a tumultuous medical journey that turned bouts of flu and meningitis into tangos with death, and generated overwhelming fatigue, stroke-like symptoms and inexplicable progressive hearing loss.
While a freshman at San Diego State, the Minnesota native became so sick she had to undergo IV infusions two or three times a week and swallow a daily regimen of 26 pills.
These mysterious ailments acted like an alien invader commandeering her life for a decade. Finally, following a parade of medical exams and batteries of scans, blood tests and spinal taps, the culprit was identified — a tick.
An insect so small she had never seen it had infected her with Lyme disease. She guesses she was age 11 or 12 at the time.
Eventually she beat the disease, thanks to a month at the St. Georg Klinik in Germany and an innovative treatment that guided her body temperature up to 107.6 degrees.
The Lyme disease was gone but the Meniere’s disease symptoms it most likely triggered remained, stealing more of her hearing as the months passed.
Life works in strange ways. Kent, now 24, never could have dreamed that a miniscule tick would affect her career, turning her into a social media warrior for good.
On Instagram, she shared her story as she lived it in a streak of mini videos. She wanted other Lyme disease victims to benefit and learn from her experience.
As her left ear deteriorated to the point tests showed she could only recognize and repeat 4 percent of the words she heard, Kent opted to get a cochlear implant at UCSD Health last March.
The medical device was slipped into an incision in her scalp behind her ear and a water-resistant silicone-sheathed battery was clipped over the ear to amplify the sound.
San Diegan Daisy Kent pulls her hair back to show her hearing device, which normally is under her hair and not visible.
(Image courtesy of Cochlear Americas)
A newcomer to TikTok, the SDSU communications and journalism grad, began touting the simple device on TikTok. It had changed her life. She even wore it this summer while wake boarding and water skiing in Minnesota.
“When I started posting, it was an outlet for me to share what was going on in my life and make connections with other girls and guys my age who have cochlear implants,” she says.
When two of her TikTok posts, (@daisyykent) zoomed above 11 million views, she captured the attention of the cochlear implant industry.
Ironically, a representative of Cochlear Americas Corp. was sharing the viral videos of this engaging young woman with UCSD Health’s Dr. Elina Kari, an ENT who specializes in treating disorders of hearing and the inner ear.
Kari happened to be the doctor of the girl in the video who, on her own initiative, was educating people about the ease of wearing a device that had changed her life.
“You have got to reach out to this young lady,” Kari told the rep. “She’s young and can appeal to a whole new group of people who are too embarrassed or too afraid to wear hearing devices. … There are lots of people out there who feel alone.”
The physician called Kent the perfect person to be on TikTok because she can speak effectively to the younger generation in a relatable way.
The North America implant distributors contacted her on Instagram, and Kent recently joined forces with them as a social media influencer. This positions her to further get out the word about this medical device that could greatly enhance their lives.
Before taking the implant leap herself, she had consulted with others suffering hearing loss who vouched for the device. “They said it was the best thing they’d ever done,” Kent says, “and wished they gotten it sooner.”
Dr. Kari cautions that cochlear implants aren’t for everyone, depending on hearing issues. “But they are a life-changing, miraculous option for the right people.”
Kent gets frequent online queries.
“I’ve had a lot of moms reach out to me through Instagram and ask if they should get it for their child. It’s been really cool to see them find comfort from my experience.”
One of those moms is Jennie Antonakis, of Los Angeles, who stumbled upon Daisy online. Her 5 -year-old son, who is partially deaf in his left ear, had implant surgery Tuesday. His device will be activated in three weeks when the incision has healed.
Antonakis, who is on the board of the Hearing Loss Association of America, says it was difficult for a mom not going through the experience to understand her son’s needs. “I realized how much education is lacking.”
She describes Kent as “a bright, loving personality” — one of the few online influencers using her platform to take fear out of the unknown.
“I learn a lot from her because it’s real life,” says Antonakis, who watches Kent sharing her everyday activities on videos with her son.
By day, Kent works from her home in Pacific Beach on software sales. But she would like to switch her full attention to a nonprofit foundation, HearYourHeart.org that she recently founded to raise money to help those with hearing loss pay for cochlear implants.
The implant itself can cost $30,000 to $40,000, plus $11,000, or so, for the external component, not counting surgery expense, estimates Kari, who performs 75 to 100 cochlear implants a year.
The motto of her foundation summarizes Kent’s mission: “We make helping others hear and be heard our No. 1 priority. “
Kent’s younger sister, who had started a GoFundMe campaign two years ago to help pay for her sister’s $70,000 Lyme disease treatment in Germany, remains her biggest fan.
“She is slow to ask for help but doesn’t hesitate to help others,” Adeline Kent wrote in her fundraising appeal. “I’ve had a front-row seat watching her have seizures, hearing loss, meningitis, spinal taps, Meniere’s disease, fatigue, chronic pain.”
Adeline recalled the many days in which Daisy was unable to leave her bed because she was so weak.
But that has changed. And Kent is channeling her energy into spreading the implant gospel to inform others that a cochlear device is not something you need to hide.