RICHMOND, Va. — Music superstar Justin Bieber’s recent diagnosis with Ramsay Hunt syndrome ignited a nationwide conversation about the rare neurological disorder. A former Richmond news reporter knows firsthand the long road to recovery ahead for the singer.
"It is from this virus attacks the nerves in my ear, my facial nerves, and has caused my face to have paralysis," Bieber said in a video posted to Instagram.
The 28-year-old musician was forced to cancel three appearances this week on his Justice World Tour as a result. "Obviously my body is telling me I gotta slow down," Bieber said.
Mark Tenia was a news reporter at WRIC when he was misdiagnosed with Bell’s palsy syndrome in November 2017. He went home and discovered details about Ramsay Hunt syndrome after researching his symptoms online.
“I read online that if you have Bell's palsy, you better hope that it's actually not Ramsay hunt syndrome because it's a much harder road to recover to recovery,” Tenia recalled. “I wasn't seeing any symptoms initially saying that I had Ramsay Hunt syndrome.”
Tenia said he returned to the doctor who then correctly diagnosed him with Ramsay Hunt syndrome.
It is caused by varicella zoster, the same virus which causes both chickenpox and shingles, explains the American Academy of Otolaryngology Head and Neck Surgery. It is also very rare.
According to the National Organization for Rare Disorders, only five people per 100,000 are estimated to contract Ramsay Hunt annually.
It can occur in anyone who has had chickenpox, and is triggered by a shingles outbreak, according to the Mayo Clinic. It can cause both a rash around one ear and paralysis on one side of the face — as is apparently being experienced by Bieber.
Other symptoms can include hearing loss and vertigo.
Tenia said the misdiagnosis forced him to miss a critical three-day window to take the necessary medication to prevent the most serious symptoms. He missed that window by more than a week while taking medication for Bell's palsy.
The virus forced Tenia off the air while he worked to regain control of the muscles in his face. Doctors feared he’d never fully recover.
“I could not speak clearly. I could not move the right side of my face at all, like I couldn't blink,” Tenia stated. “I could not be an on-air reporter during that time, but I still worked to shoot stories. I would write stories and other people would track those stories for me. It was a huge adjustment because so much of my career was spent in front of the camera speaking to an audience, and I couldn't do that anymore.”
Depending on the extent of the nerve damage, recovery usually occurs within a few weeks, according to information from the Mount Sinai Health System. Treatment options can include anti-inflammatory and antiviral medications such as prednisone, acyclovir and valacyclovir.
In severe cases, it can cause permanent hearing loss and eye damage, the Mayo Clinic says.
Nearly five years later, Tenia has assumed a new communications position with the Richmond Ambulance Authority. He said he’s about 95% back to normal.
“Sometimes I get tightness. Sometimes it's sore. I cannot smile fully and it's probably hard for folks to notice that. But those are things that I notice,” he said.
Doctors believed stress caused Tenia to suffer from this virus.
He added that the important lessons he’s learned on his road to recovery are to listen to your body and don’t hesitate to get a second opinion.
Tenia credits a strong support system for his recovery that allowed him to continue working behind the scenes and at home.
“You really do have to have a positive attitude. I really believe that having that positive attitude and being able to say, ‘I’m going to overcome this challenge.’ I was willing to accept whatever happened, whether or not I gain function on the side of my face or not. If I had done everything possible to try and improve my situation, I can accept that,” he explained.
