An eight-year-old boy with the same rare condition as Justin Bieber has said the star’s diagnosis would help raise awareness.
Ethan, from Newport, and Bieber both have Ramsay Hunt syndrome (RHS), which, among other things, can cause facial paralysis.
Ethan said he wished Bieber well, and that him going public had made it “easier to talk about” the condition.
A big Bieber fan, Ethan has had the condition since he was six years old.
RHS is when a shingles outbreak affects the facial nerve near someone’s ears, resulting in paralysis of parts of the face as well as blisters in the ears and on the roof of the mouth.
Justin Bieber had to cancel his world tour this month due to ongoing issues with the condition.
Ethan said he was “really shocked” to find out the musician was suffering with the same illness when he announced it last year.
He said: “I knew what he was going to have to go through and some of what he had to go through was going to be scary.”
Ethan has offered Bieber some words of advice: “have a lot of rest” and “do exercises on your face”.
Although a full recovery is possible, Ethan said Bieber should be aware of the long lasting impact.
“You’ll still see a little bit of it, even if nobody else can ever see it,” he said.
‘Hard to understand’
Ethan’s mother Kirsty said she understood how “heartbreaking” it must be for Justin and his fans to have to cancel the tour, but that she and her son “probably understood that more than a lot of people”.
“Ramsay Hunt syndrome can affect people in many different ways,” she said.
“It causes a lot of tiredness and a lot of pain. So I can completely understand him cancelling his tour.”
Kirsty added she had “felt really sorry for him” when he had to cancel his tour but it had “helped with making other people aware of the condition”.
“I’d just like there to be more support out there – the hospitals don’t have much information and it’s really hard to get any information or any treatment plan. So the more awareness that’s brought to the condition the better,” she added.
‘Misdiagnosis a problem’
In a survey of 206 RHS patients in the UK, Facial Palsy UK found that over 50% of those with RHS had been initially misdiagnosed as having Bell’s palsy.
This was the case for Ethan when Kirsty took him to the Grange Hospital in Cwmbran in January 2021.
Initially she thought the symptoms were due to a cold, but she noticed his face had started to drop on one side, a symptom common to both Bell’s palsy and RHS.
Ethan was diagnosed with Bell’s palsy, given steroids and sent home.
It was only after Kirsty did her own research that she started to believe it was in fact RHS. She approached doctors, who agreed.
“Its really hard – because it is so rare you’ve got nowhere to turn,” said Kirsty.
“I didn’t know of anybody who had the same condition – I couldn’t talk to anybody who could just give me life experience and things that I should do and things that I shouldn’t do. I didn’t have any of that.”
Kirsty went on to pay for facial therapy for Ethan in 2021 and 2022, which helped him make a strong recovery, but she still worries.
“I think the future’s slightly uncertain,” she said.
“There’s underlying aspects to the condition that are still very apparent to him.”
A spokesman for Aneurin Bevan University Health Board apologised that Kirsty was unhappy with her care and encouraged her to contact them directly.
‘More funding needed’
Charity Facial Palsy UK said Wales needed more funding for the condition.
A Welsh government spokesperson said: “We recognise the distress that Ramsay Hunt syndrome and other facial paralysis can cause.
“Our Quality Statement for Neurological Conditions sets the outcomes and standards we expect health boards to achieve in delivering support and treatment for people living with any kind of neurological condition.
“We want all those living with a neurological condition to live their best lives and will continue to work with health boards and the Neurological Conditions Implementation Group to raise awareness of all neurological conditions and to develop and deliver effective services.”