This founder and Instagram influencer woke up with a mystery illness, then documented her journey to getting a diagnosis

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It started with ear pain.

back in september, katie sturinoBody acceptance influencer on Instagram and founder of the beauty brand megababe, woke up feeling tired and generally just weird. His symptoms soon intensified.

“It started off light and then built up over a four day period,” she says.

A seemingly simple symptom would start a weeks-long journey in which Sturino learned about the difficulty of dealing with an invisible disease and the importance of defending herself in the health system.

Sturino went to an emergency clinic where a doctor, learning that Sturino’s dog had recently contracted Lyme disease, prescribed an antibiotic in case Sturino had also contracted it.

That sent Sturino down an internet rabbit hole about the disease, which is notoriously misunderstood and can go undiagnosed for months.

“I felt like I was ahead of the curve for a second,” she says. In the ER, doctors ran a test for Lyme disease and Sturino shared his concerns on social media as he awaited final results.

His followers were quick to share their stories of living with Lyme disease and tips from doctors who knew how to treat it. But a few days after her ER visit, another symptom appeared. This time, Sturino woke up to find that the right side of his face was numb. Looking in the mirror, he saw that her eye and cheek were drooping. His tongue felt thick and slow. He struggled to speak clearly as he took to Instagram to update followers on his latest symptom.

Katie Sturino contracted a condition that caused facial paralysis.

Courtesy of Katie Sturino

“Once I had facial paralysis, people took me seriously,” he says of friends and family. “Complaining of ear pain and not feeling well, nobody took me seriously.”

Sturino thought he was experiencing neurological complications from Lyme disease. Meanwhile, he was still waiting for the results of his Lyme test. She wouldn’t need them. Over the next few days, her ear swelled to the point where she had to visit the emergency room. It was there that she learned that she had shingles.

And it turns out that shingles can become Ramsay Hunt syndrome when it affects a facial nerve near the ear, causing facial paralysis. The Cleveland Clinic explains that Ramsay Hunt is a complication of shingles or chickenpox, which are caused by the varicella-zoster virus. If you had chickenpox as a child, you can develop shingles as an adult when the latent virus reactivates. And when the virus reactivates specifically in the facial nerve, it causes severe ear pain and facial paralysis, called Ramsay Hunt syndrome.

It’s the same syndrome that singer Justin Bieber suffered from over the summer, which he briefly spoke about before withdrawing from social media to heal. Still, it’s a rare disease, one that only five in 100,000 Americans develop each year, according to the Cleveland Clinic.

Bell’s palsy, a similar condition that causes facial paralysis, was also ruled out once doctors learned Sturino had shingles. Bell’s palsy is responsible for 7% of cases of facial paralysis, according to the Cleveland Clinic. But because both conditions are difficult to diagnose, those numbers probably don’t represent the whole picture.

With a firm diagnosis in hand, Sturino was given new shingles medications, including Valtrex (used in the treatment of shingles, chickenpox, and herpes), supplements, and a steroid. She also began doing acupuncture on her face, at the suggestion of some of her followers, to help with the paralysis. She credits it with alleviating her symptoms in about two weeks.

“I think acupuncture helped me recover faster,” she says. About 10 days after her ER visit, she was feeling better. The Cleveland Clinic estimates that about 70% of patients make a full recovery, while some experience permanent facial paralysis or hearing loss.

Sturino considers herself lucky. She has “good” health insurance for the first time in her adult life, and she isn’t afraid to stand up for herself. Her brand Megababe by ella focuses on personal care products for conditions that are often ignored—think thigh chafing. She is comfortable being candid with her followers, and credits her information on her acupuncture and even her advice on Lyme disease for guiding her on the right path.

“Showing my face when I was feeling really vulnerable definitely connects to the core of what I do, which is just shining a light on places that aren’t discussed,” she says.

If she had been embarrassed to share her symptoms, it may have discouraged her from seeking further treatment.

“For women, going to a doctor’s office without a physical symptom, they will tell you to lose weight, take this medication for depression,” she says. “It’s crazy that you have to find a specialized doctor to treat an autoimmune disease because otherwise you’re so easily written off.”

Once he experienced facial paralysis, it was easier for him to find a diagnosis.

Yet even after dealing with the disease firsthand, Sturino still struggles to explain how all the symptoms and conditions were linked.

“This is not something known. It is not common knowledge. It’s you and me being internet detectives and trying to figure it out,” she says.

Since then, Sturino has gained a new following who have had similar problems, people who say it’s good to have an advocate for the disease.

“I finally got my energy back, but it took another month before I felt better,” she says.

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