Justin Bieber: Boy with Ramsay Hunt syndrome thanks star

An eight-year-old boy with the identical uncommon situation as Justin Bieber has mentioned the star’s analysis would assist elevate consciousness.

Ethan, from Newport, and Bieber each have Ramsay Hunt syndrome (RHS), which, amongst different issues, could cause facial paralysis.

Ethan mentioned he wished Bieber effectively, and that him going public had made it “easier to talk about” the situation.

A giant Bieber fan, Ethan has had the situation since he was six years previous.

RHS is when a shingles outbreak impacts the facial nerve near somebody’s ears, leading to paralysis of elements of the face in addition to blisters within the ears and on the roof of the mouth.

Justin Bieber needed to cancel his world tour this month as a consequence of ongoing points with the situation.

Ethan mentioned he was “really shocked” to search out out the musician was struggling with the identical sickness when he introduced it final 12 months.

He mentioned: “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 supplied Bieber some phrases of recommendation: “have a lot of rest” and “do exercises on your face”.

Although a full restoration is feasible, Ethan mentioned Bieber ought to pay attention to the lengthy lasting affect.

“You’ll still see a little bit of it, even if nobody else can ever see it,” he mentioned.

Ethan’s mom Kirsty mentioned she understood how “heartbreaking” it should be for Justin and his followers to need to cancel the tour, however 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 mentioned.

“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 needed to cancel his tour but it surely 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.

In a survey of 206 RHS sufferers within the UK, Facial Palsy UK discovered that over 50% of these 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 signs have been as a consequence of a chilly, however she observed his face had began to drop on one aspect, a symptom frequent to each Bell’s palsy and RHS.

Ethan was recognized with Bell’s palsy, given steroids and despatched home.

It was solely after Kirsty did her personal analysis that she began to imagine it was in actual fact RHS. She approached medical doctors, who agreed.

“Its really hard – because it is so rare you’ve got nowhere to turn,” mentioned 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 remedy for Ethan in 2021 and 2022, which helped him make a powerful restoration, however she nonetheless worries.

“I think the future’s slightly uncertain,” she mentioned.

“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 sad along with her care and inspired her to contact them immediately.

Charity Facial Palsy UK mentioned Wales wanted extra funding for the situation.

A Welsh authorities spokesperson mentioned: “We recognise the distress that Ramsay Hunt syndrome and other facial paralysis can cause.

“Our Quality Statement for Neurological Conditions units the outcomes and requirements we count on well being boards to achieve in delivering help and therapy for folks living with any type of neurological situation.

“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.”