Justin Bieber: A boy with Ramsay Hunt syndrome thanks his star – BBC News Africa

An eight-year-old boy with the same rare disease as Justin Bieber says the star’s diagnosis will 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 going public has made it “easier to talk about” the disease.

A big Bieber fan, Ethan has suffered from the disease since he was six years old.

Ethan said he was “really shocked” to hear the musician was suffering from the same condition 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 gave Bieber some advice: “get plenty of rest” and “do exercises on your face.”

Although a full recovery is possible, Ethan said Bieber should be aware of the long-term impact.

“You’ll still see some of it, even though no one else will ever be able to see it,” he said.

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 folks “.

“Ramsay Hunt syndrome can affect people in different ways,” she said.

“It causes a lot of fatigue and a lot of pain. So I can totally understand him canceling his tour.”

Kirsty added that she “felt really sorry for him” when he had to cancel his tour, but that it “helped raise awareness about his condition”.

“I just wish there was more support there – hospitals don’t have a lot of information and it’s really hard to get information or a treatment plan. So the more awareness the bigger the better,” she added. .

In a survey of 206 RHS patients in the UK, Facial Palsy UK found that over 50% of people with RHS were initially misdiagnosed as having Bell’s palsy.

This was the case for Ethan when Kirsty took him to Grange Hospital in Cwmbran in January 2021.

Initially, she thought the symptoms were due to a cold, but noticed that her face had started to droop to one side, a symptom common to Bell’s palsy and RHS.

Ethan was diagnosed with Bell’s Palsy, given steroids, and sent home.

It wasn’t until Kirsty did her own research that she began to believe it was actually HRH. She approached doctors, who agreed.

“It’s really hard – because it’s so rare you have nowhere to go,” Kirsty said.

“I didn’t know anyone who had the same condition – I couldn’t talk to anyone who could just give me experience of life and the things I should do and the things I shouldn’t do. I had no This.”

Kirsty then paid for Ethan’s facial therapy in 2021 and 2022, which helped him make a solid recovery, but she still worries.

“I think the future is slightly uncertain,” she said.

“There are underlying aspects of the condition that are still very apparent to him.”

A spokesperson for the Aneurin Bevan University Board of Health apologized that Kirsty was unhappy with her care and encouraged her to contact them directly.

Charity Facial Palsy UK said Wales needed more funding for the condition.

A Welsh Government spokesperson said: “We recognize the distress that Ramsay Hunt Syndrome and other facial paralysis can cause.

“Our quality statement for neurological conditions sets out the outcomes and standards we expect health boards to provide support and treatment for people living with any type of neurological condition.

“We want everyone living with a neurological disease to live their best life and we will continue to work with the health boards and the neurological disease implementation group to raise awareness of all neurological diseases and to develop and deliver effective services .”