You've heard of Ramsay Hunt Syndrome: One Florida woman's story

Jennifer Dixon’s phone started blowing up earlier this month over, of all things, Justin Bieber.

The 49-year-old mom and Orlando foodie and attractions blogger doesn’t fit in the typical “Belieber” demo. But she has something far more important in common with the pop star.

Dixon also developed facial paralysis because of Ramsay Hunt Syndrome, a rare condition triggered by the reactivation of the shingles virus in the cranial nerves that affect the inner ear and muscles of the face.

“My inbox started going crazy,” she said of the hours after Beiber posted an Instagram video announcing he was diagnosed with the syndrome. “People started asking me, ‘Is this the same thing?’”

Dixon learned she had the condition in 2018 when she woke up one morning and her husband thought she was having a stroke because one side of her face was drooping.

They rushed to the AdventHealth Winter Garden Emergency Room, where they credit the quick action of doctors and nurses with helping her recover. Dixon had a small rash on her back, also a telltale sign of the shingles virus, so she was treated right away with antiviral drugs and other treatments.

Dr. Alkesh Brahmbhatt, NeuroScience system emergency department director at AdventHealth Orlando, said Dixon’s case illustrates how AdventHealth’s network of emergency rooms works together to match patients to the advanced level of care they need.

“The ER is the ultimate catch-all for multiple medical dilemmas,” Brahmbhatt said. “As we tell patients, if you have any doubts – if you’re experiencing pain, dizziness or any uneasiness with your health condition – come to the ER and we’ll make a determination about what the next levels of care may be.”

Dixon battled a number of complications brought on by the condition such as trouble blinking and swallowing and severe vertigo.

Physical therapy through AdventHealth Sports Medicine and Rehabilitation helped strengthen her facial muscles.

Today the paralysis on the right side of her face has improved from a Grade 5, the most severe, to a Grade 3.

The recent “Biebermania” over Ramsay Hunt has triggered some hard moments of reliving her early days with the diagnosis, Dixon said. But she’s also happy for the attention brought to the rare condition because early treatment is so critical for a good outcome.

And there’s one thing she wants Bieber’s detractors to know: The consequences of facial paralysis are not about ego or pride.

This is about more than just looking in a mirror, she said. Your face is very much aligned with your sense of self. The tiny nerves and muscles many people take for granted are how you express yourself. They are essential for the way we greet and respond to others.

“It’s not vanity,” she said. “It’s your identity.”