A rare neurological disorder that causes facial paralysis is in the spotlight after singer Justin Bieber revealed he can’t blink or smile.
The 28-year-old has postponed his world tour and told fans in an Instagram video that he was being treated for Ramsay Hunt Syndrome, a tile complication.
If you’ve never heard of it, you’re not alone.
Ramsay Hunt syndrome is a rare disease that is often misdiagnosed as Bell’s palsy, a condition that also causes facial paralysis.
In fact, it is so rare that it is not known exactly how many people have it, and those who are diagnosed often rely on each other for support and information.
That’s something Elizabeth Robinson has been working to change since she surprised her seven years ago.
“It devastated and changed my life completely,” Robinson told ABC.
Elizabeth Robinson is passionate about raising awareness about Ramsay Hunt Syndrome. (Provided by: Elizabeth Robinson)
What Causes Ramsay Hunt Syndrome?
Ramsay Hunt Syndrome occurs in people who have had chickenpox because it is caused by the virus itself.
Chickenpox virus stays in your body and is harmless unless it reactivates, usually due to stress.
This causes a painful rash called shingles.
Ramsay Hunt Syndrome is a tile complication because the tile travels to the inner ear, goes up the cranial nerves, and down the facial nerves, inflaming them.
This causes facial paralysis.
Tiles can also inflame or crush the auditory nerves, causing hearing loss.
Mrs Robinson, then a French teacher, was going through a particularly stressful time when she was diagnosed with Ramsay Hunt Syndrome in January 2015.
She has not yet recovered from the serious condition, which paralyzed 95% of her left side of her face and left her deaf in her left ear.
“I haven’t been able to work as a teacher since,” she said.
“It affects my speech, my hearing, my balance.”
Elizabeth Robinson before and after her facial paralysis from Ramsay Hunt Syndrome. (Provided by: Elizabeth Robinson)
What are the symptoms of Ramsay Hunt syndrome?
Ms Robinson said her first symptom was unbearable toothache.
“Not just one tooth, all the teeth on the left side,” he said.
“Then I had an unbearable earache like nothing I’ve ever experienced before: it was like my ear was on fire.”
The doctor who examined her inner ear noticed that it was slightly pink, but her lymph nodes were not swollen, so they referred her to the dentist for an infected tooth.
That night, Mrs. Robinson’s sister commented that her eye was beginning to “look a little funny.”
“I said,‘ No, I’m just really tired, I have a sore ear, ’so I went to bed.
“At 4 in the morning I woke up and went to splash my face in the bathroom and get some water because my mouth was incredibly dry.
“[The water] it just ran down my face.
“I turned on the light; my first thought was that I was having a stroke.”
After using the FAST method (fall of the face, weakness of the arm, difficulty speaking and time), Ms. Robinson ruled out the possibility of a stroke and waited to see the dentist, who referred her to a service. of emergencies.
“When I arrived at the emergency room at nine that morning, the shingles had developed so badly that my ear was on fire and was bright red,” he said.
Symptoms of Ramsay Hunt Syndrome:
- Headache
- Earache
- Facial paralysis
- Dizziness or vertigo
- Hearing loss or tinnitus
- Dry / teary or painful eye
- Rash or blisters full of fluid on the tongue, ears and / or mouth
Source: Facial Palsy UK
Ramsay Hunt syndrome is often misdiagnosed as Bell’s palsy due to facial paralysis, and not all patients have a rash immediately.
But Ms Robinson said the biggest difference between the two was pain.
Mikaela Pretorius was 35 weeks pregnant with her second child in November 2014 when she developed a very severe headache.
After having preeclampsia during her first pregnancy, she knew it was a possible sign of the pregnancy-related condition and went to the hospital.
“It was like,‘ Oh, here you go, grab some Panadeine Forte. You know it’s just a headache, we’ve checked, everything is fine, “Ms Pretorius told ABC.
“And I ‘m sitting in bed [at hospital] and my husband says to me, “You’re blinking funny.”
“We told the nurses and midwives and they said, ‘It’s just headaches and stress, you’re fine.’
“I was sent home. The next day, still blinking funny.”
Mrs. Pretorius said she went to a clinic where she was told she needed an ambulance.
He spent three days in the hospital and was warned that the steroids he was taking to treat the infection could make him suffer early.
“I have permanent facial paralysis,” Ms. Pretorius said.
“My right side of my face has some movement, like I can blink again, but it’s not the same.
“I was lucky because it wasn’t in my ear, [it was in the back of my throat]so I haven’t had any long-term balance and hearing problems. “
Mikaela Pretorius before and after being attacked by Ramsay Hunt Syndrome. (Supplied by: Mikaela Pretorius)
What is the treatment for Ramsay Hunt syndrome?
Facial Palsy UK, a charity that supports people with facial paralysis for any reason, says patients with suspected Ramsay Hunt Syndrome should receive antivirals and steroids within 72 hours of the onset of symptoms.
He says that if this is done, around 70% of people will experience a “virtually complete recovery”.
Otherwise, the chances of a full recovery are reduced to 50 percent.
“The more severe the damage, the longer it will take to recover and the less likely you are to fully recover from normal function,” says the organization.
Ms Pretorius said she had not seen any of the support groups fully recovered.
“If they had it in their ear, their face might have recovered, but their ear would not, their balance would not,” he said.
“At six months [mark]they say, ‘This is as good as it gets.’ “
The mother of two gets botox injections every three months to “even out” her face.
“I’ll have pain, like just a muscle strain on both sides, because it also throws the other side,” Ms. Pretorius said.
Mrs. Pretorius said she felt sorry for Justin Bieber because she knew why he was going through it.
“He’ll probably never smile the same again,” he said.
“I’m sure there will be so many: ‘This is Justin Bieber before, this is him now,'” he said.
“It’s a horrible, terrible disease because it’s your face.
“You approach someone and say hello and you know they’re looking at you funny. That’s horrible.”
There is no cure for Ramsay Hunt syndrome, but the severity of shingles can be reduced by vaccination.
To Mrs. Robinson was given antivirals within 72 hours, but his paralysis was so severe that he needed more treatment, which he did not receive.
Since then, he has passionately advocated for awareness of Ramsay Health Syndrome.
“I do this so that no one else has to go through what I went through.”
Posted 16 hours ago 16 hours, Saturday, June 11, 2022 at 7:37 AM, updated 1 hour, 1 hour ago, Saturday, June 11, 2022 at 10:16 PM