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It started with an earache.
In September, Katie Sturino, an Instagram developer and founder of the beauty product brand Megababe, woke up tired and completely different. It didn’t take long for her symptoms to increase.
“The moon started to rise for four days,” he said.
It seemed like a simple start to a weeks-long journey that taught Sturino about the difficulty of dealing with an unknown illness and the importance of self-advocacy in the health care system.
Sturino went to an urgent care clinic where a doctor, learning that Sturino’s dog had contracted Lyme disease, prescribed antibiotics in case Sturino was also infected.
That sent Sturino down the internet rabbit hole of death, which is highly unlikely to be known for months.
“I felt like I was ahead of the curve for a second,” he said. In emergency care, doctors performed a Lyme disease test and Sturino shared her concerns on social media while waiting for definitive results.
Her students were quick to share their stories of living with Lyme disease and thoughts on doctors who know how to treat it. But a few days after his sudden departure, another sign appeared. At this point Sturino awoke to find the right side of his face gone. He looked in the mirror and saw his face and cheek drooping. His tongue was thick and slow. She was able to speak clearly as she took to Instagram to let fans know about her new brand.
By Katie Sturino
“When I was diagnosed with facial paralysis, people cared about me,” she said of friends and family. “Complaining about ear pain and discomfort, no one really paid attention to me.”
Sturino said he was suffering from symptoms of Lyme disease. Currently, she is still waiting for her Lyme test results. He doesn’t need them. Over the next few days his ear swelled to the point where he had to visit the emergency room. That’s when he learned he had shingles.
And when the disease turns into Ramsay Hunt syndrome when it affects the optic nerve near the ear, it causes facial paralysis. The Cleveland Clinic explains that Ramsay Hunt is a complication of shingles, or chicken pox, caused by the varicella-zoster virus. If you were infected with chicken pox as a child, you can develop shingles as an adult when the sleeping virus survives. And if the virus reactivates in your optic nerve, it can cause ear pain and eye paralysis, called Ramsay Hunt syndrome.
It’s also the cancer singer Justin Bieber visited in the summer, he spoke briefly before leaving social media to recover. However, it’s a rare disease, with only five in 100,000 Americans developing it each year, according to the Cleveland Clinic.
Bell’s Palsy, a similar condition caused by facial paralysis, was ruled out when doctors diagnosed Sturino with paralysis. Bell’s Palsy is responsible for 7% of facial paralysis cases, according to the Cleveland Clinic. But because both conditions are difficult to monitor, those numbers may not paint the whole picture.
When his illness caught up with him, Sturino was prescribed new medications for arthritis including Valtrex (used to treat shingles, chickenpox, herpes), supplements, and steroids. He also started acupuncture on his face, at the suggestion of some of his students, to help the paralysis. He promises to heal his symptoms within two weeks.
“I think acupuncture helped me heal faster,” she said. Within 10 days of her visit to the ER, she was feeling better. According to the Cleveland Clinic, about 70% of patients survive while others experience permanent visual paralysis or hearing loss.
Sturino is lucky. He has “good” health insurance for the first time in his adult life, and he’s not afraid to advocate for himself. Her brand Megababe focuses on personal care products for neglected conditions: think hip pain. She likes to be honest with her students, receiving their advice on acupuncture and advice on Lyme disease and guiding her in the right direction.
“Showing my face when I’m most vulnerable is connected to the purpose of my work, shining a light on places that aren’t talked about,” she says.
If she is embarrassed to share her symptoms she may be discouraged from seeking further treatment.
“For women, when they go to the doctor’s office without any physical symptoms, they tell you to lose weight, take this anti-inflammatory drug,” he said. “It’s crazy that you have to find a special doctor to deal with an autoimmune disease because otherwise it’s so easy to get rid of.”
When he suffered from facial paralysis, he had an easier time finding the disease.
Yet even after his first encounter with the disease, Sturino continued to struggle to explain how all the symptoms and conditions were connected.
“This is not a known thing. It’s not common sense. You and I are internet surfers and trying to figure it out,” he said.
Sturino has since gained new students who have experienced similar problems, people who say it’s good to have an advocate for the disease.
“I finally got my strength back, but it took a month before I felt better,” he said.
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