I have Ramsay Hunt syndrome and half of my face has been left paralysed

On Saturday June 11, Justin Bieber shared with the world he had Ramsay Hunt syndrome which has left half of his face paralysed. In a video posted to Instagram the Canadian singer revealed he had been diagnosed with the rare syndrome. Throughout the video you can see the star attempt to smile and blink with half of his face remaining still.

He said: “As you can probably see from my face, I have this syndrome called Ramsay Hunt and it is from this virus that attacks the nerve in my ear and my facial nerves and has caused my face to have paralysis. As you can see this eye is not blinking, I can’t smile on this side of my face.”

According to Facial Palsy UK, Ramsay Hunt syndrome is a complication of shingles, which is used to describe the symptoms of shingles affecting the facial nerve. Symptoms of the syndrome include weakness on the affected side of your face which causes the facial muscles to droop. Despite this being a rare infection, there are people living with Ramsay Hunt syndrome.

Callum Gravestock is 21 years old and is living with Ramsay Hunt syndrome. Two weeks ago, he was diagnosed with the infection after suffering from shingles. After the rash began to clear away, he started to realise the left side of his face was drooping, he couldn’t wink or smile. “I got home from work and rang up 111, and they sent an ambulance over just to make sure I wasn’t having a stroke because they don’t get many calls like that.”, he said.

Callum got to see a doctor soon after and that is how he found out about the infection and was diagnosed with Ramsay Hunt syndrome. Callum said: “I had no idea what it was. When my face started drooping, I was like ‘am I having a stroke?’, I had never heard of it before until I got told that I had it and I was clueless, but I know a lot more about it now.”

Part of Callum’s symptoms of Ramsay Hunt include one side of his face becoming paralysed and a loss of hearing. Currently for Callum that means he has lost the use of the left side of his face and cannot hear out of his left ear, which is the side of his face he had shingles on. “It’s like facial paralysis and you just can’t do much with that side of your face.”, he said.

via Instagram @calgeee

In some cases, Ramsay Hunt syndrome can be permanent, but it can also recover in a few weeks. Callum has been medicated for the last few days on steroids, and has been seeing improvements but there are some parts of his face that are still not working. “I didn’t really get a timeframe, because even the doctors didn’t know much about it.”

Callum made a TikTok sharing his experience, which has amassed over four million views, following Justin Bieber sharing he was suffering from Ramsay Hunt. He said: “Literally as soon as I saw that he came out about it I was like okay I’m going through the same thing as him right now, I might as well just put it out there on TikTok and see what response I get, and I didn’t expect it to blow up how it has but it’s been crazy.” Callum has received both positive and negative responses from sharing his experience on TikTok. “You get people who are wishing me well and want to know more about it, but you also get the conspiracy theorists who say why it’s happening to me as it’s not very common to have this sort of condition. It’s been a mixed bag of reactions, but I expected that”, he said.

Callum jokingly said he has been waiting on his DM from the Canadian superstar but hasn’t heard anything yet, but he has received messages from people sending their support. “I’ve been waiting for the DM from Bieber, but he hasn’t DM’d me yet. I haven’t spoken to anyone else who has it, but I’ve received a few DMs from people that have known people who have had it in the past and what to do.”

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