- People with Ramsay Hunt syndrome have been reacting to Justin Bieber’s diagnosis.
- The singer announced last week half of his face was temporarily paralyzed by the syndrome.
- They range from debilitating dizziness to long-lasting facial paralysis like Bieber’s.
People with Ramsay Hunt syndrome — a rare complication that follows a viral infection — are reacting to the news that Justin Bieber had to cancel a series of shows after coming down with the condition.
The 28-year old singer announced his diagnosis in a post on Instagram Friday. Bieber demonstrated that half of his face was paralyzed.
“As you can see, this eye is not blinking, I can’t smile on this side of my face, this nostril will not move. So there’s full paralysis on this side of my face,” he said in the post.
Ramsay Hunt is a rare complication from the common virus that causes chickenpox and shingles, as Insider’s Gabby Landsverk reported.
Nicoya Rescorla, who has lived with the syndrome for the past 20 months, said the singer’s announcement brought tears to her eyes.
Speaking to Reuters, Rescorla said: “It’s heartwarming that he’s spreading awareness.”
Rescorla, a 28-year-old mom of three living in the UK, said the condition has had a “huge impact” on her day-to-day life.
Her symptoms include tips of dizziness and vertigo. She can no longer drive or leave the house on her own, she said. She has to drink any liquids through a straw, even coffee, she told Reuters.
“I went from being so independent, fiercely independent, to having my husband care for me because I haven’t been able to do it for myself,” she said.
Some of the symptoms of the condition can become permanent — but most get better with treatment, according to the Mayo Clinic.
After a chickenpox infection, the virus can survive in the nerves and can be reactivated years after the primary infection has been cleared, per the site.
Vaccination against chickenpox, which is routinely given in childhood, can decrease the risk of infection, per the Mayo Clinic.
“Don’t worry babes, we’re in this together,” TikTok star Callum Gravestock, who says he contracted the condition in the past weeks, said in a post.
Gravestock said that after describing his symptoms to the UK emergency services, including a rash on the face and neck and partial paralysis, an ambulance was sent to his house “just to make sure I wasn’t gonna have a stroke.”
He still described having partial paralysis of the face and hearing loss in one ear shortly after the end a week into his steroid treatment.
Mikaela Pretorius developed the condition in November 2014. She told the Australian broadcaster ABC news that she felt for Bieber as she could imagine his distress.
For her, the symptoms never completely went away.
“I’ve got permanent facial paralysis,” Pretorius said. “My right side of my face has some movement, like I can blink again, but it’s not the same,” she said.
According to her, no one in her patient-support group has fully recovered, though many improved.
The common treatment for Ramsay Hunt syndrome is antiviral medications and steroids, per the Rare Disease patient association NORD. Most symptoms will get better with treatment, but in some cases, some can become permanent, NORD says.
Bieber said he has hopes his symptoms will improve.
“I’m going to get better,” Bieber said in his Instagram post on Friday. “I’m doing all these facial exercises to get my face back to normal, and it will go back to normal.”