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Banchory mum reveals her own Ramsay Hunt syndrome ‘nightmare’ after Justin Bieber diagnosis

Louise Lang giving full smile next to old photo where only half her face could smile with the 'My Health Journey' logo in the middle
Louise Lang has suffered long-term complications following Ramsay Hunt syndrome diagnosis

A Banchory mum has opened up about her “nightmare” rare illness, which caused excruciating pain and paralysed her face, after seeing Justin Bieber reveal the same diagnosis.

When Louise Lang, 43, first suffered the symptoms eight years ago, she thought she was having a stroke.

She later found out it was Ramsay Hunt syndrome – a rare neurological disorder caused by the same virus found in chickenpox.

“I’d been away doing some personal development training for work, I was sitting at the airport with a splitting headache,” the mum-of-two said.

At one point Louise had to wear an eyepatch - but made sure it would reflect her personality.
At one point Louise had to wear an eyepatch – but made sure it would reflect her personality.

“It went all the way down from my forehead right down into the back of my spine, the nape of my neck and my ear was aching as well.”

Louise tried to take a drink, but found she couldn’t even close her lips properly around the glass.

She recalled: “I phoned my husband – we both thought I was having a stroke.

“We checked the symptoms but it wasn’t on the left side it was on my right, so we thought maybe that counted it out.

“I got on my flight, the headache was just excruciating and never went away, but I got home.”

Louise Lang sitting on stone next to river in Banchory
Louise Lang in Banchory. Photo by Kami Thomson

‘My whole face was paralysed’

The following day, Louise was travelling to work “as normal” thinking she’d go see the doctor en route, but before she arrived her face completely froze.

“It started with the top lip and then my whole face was paralysed.”

She headed straight to the doctor, who initially suspected Bell’s palsy – where the muscles in one side of the face become instantly weak.

As she was being checked over, Louise mentioned she was also suffering pain in her ear.

“She looked in it then asked me to go in the waiting room while she phoned neurology.

“I thought ‘Oh my goodness, what does that mean?'”

Louise Lang sitting on logs with trees and a grassy field in the background
Louise Lang. Photo by Kami Thomson

The doctor had spotted a shingles outbreak in one of her ears – close to her facial nerve – which appeared to have triggered her condition.

Louise was diagnosed with Ramsay Hunt syndrome and given anti-viral medication, leaving her fearful of the future.

“I was absolutely terrified, I didn’t know what was to come and in that moment I just thought about my face.

“I thought ‘what if I don’t get my smile back?’ I always felt that was kind of my trademark, I love to smile.”

‘Ever since I got diagnosed, it’s been a nightmare’

Louise was pregnant at the time of the diagnosis and later suffered a miscarriage.

Her GP said it was possible the pregnancy sparked the Ramsay Hunt syndrome, and caused the loss of her child.

Since then, she has had a daughter, now six, and an 11-month-old son.

And she admits parenthood with her condition can be exceptionally challenging.

“Ever since I got diagnosed, it’s been a nightmare,” Louise said.

“As a mum you feel exhausted anyway, but there are times when I need to go for a sleep – not just for 10 minutes, but hours.

“When I get exhausted that’s when you see my cognition at its worst.

“It seems like I’m forgetting words but when I close my eyes I can see them, I just can’t get it out from my brain to my mouth.”

‘I’d push my smile into place to get the muscle memory back’

Though Louise’s health has improved over the years, she still battles many of Ramsey Hunt syndrome’s symptoms.

“I would say I have 98% of my face movement back, so anyone who would meet me today wouldn’t see anything,” she says.

Louise Lang smiling up close to the camera
Louise Lang showing her present-day smile. Picture by Kami Thomson

“Those close to me can still see where there’s still a small lack of movement in my face, the only way to overcome the paralysis is by rest, it’s pretty unforgiving.

“I got acupuncture and reflexology – and when the right side of my face wouldn’t smile I’d push my smile into place just to get the muscle memory back.”

One of the larger hurdles Louise faces is her impaired cognition.

When she went back to work after her illness, she found there were things she simply couldn’t remember how to do.

“When my husband got home from working offshore, there were piles of mail because when I opened it, I didn’t really understand what I was reading,” she said.

“And if I have to go to the bank I need to have someone with me, I just don’t have the capacity anymore.”

‘Raise awareness’

Pop star Justin Bieber, who is scheduled to perform in Aberdeen next year, recently revealed he has Ramsay Hunt syndrome which meant he had to cancel some of his gigs.

After seeing the video he uploaded to Instagram, Louise recognised her own struggle.

“I was watching the clips of Justin talking, when he hesitates before he says Ramsay Hunt syndrome.

“I wondered if it’s because he’d forgotten the name or he couldn’t say it.

“I couldn’t say my Fs or my Ps, so that made for quite an uneventful or funny argument.”

She added: “I try to bring laughter to it, but it is very scary.

“You don’t know what it’s like unless you go through it. That’s why I want to raise awareness.”

Read more:

Justin Bieber reveals facial paralysis after Ramsay Hunt syndrome diagnosis

WATCH: Woman diagnosed with Bell’s palsy fights back with awareness video

Make-up artist posts beauty tutorial online two days after waking up with half her face paralysed

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