A firefighter has been left unable to recognise herself in the mirror thanks to the same rare condition Justin Bieber had – as ‘stress’ left her face paralysed. Emma Hawkins had woken up after sleeping off a night shift at 3pm on June 9th and tried to take a sip of water from her bottle but struggled to drink anything.
At first, the on-call firefighter just believed she was still groggy from her shift and went for a shower to wake up. But after spotting her ‘droopy’ face in the bathroom mirror, she believed she was having a stroke and called 111 who immediately sent an ambulance to her house.
However, after a number of weeks of the condition being wrongly diagnosed as Bell’s Palsy, the 35-year-old was finally told she had Ramsay Hunt syndrome (RHS). Emma claims the specialist said her RHS was ‘stress-induced’, which caused a dormant strain of chickenpox lying in her ear from childhood to cause inflammation in the ear canal and crush her facial nerves.
Shocking videos taken at the start of her RHS journey show the left side of Emma’s face completely paralysed and unable to smile, blink or control involuntary eye movements. It has now been three months since the control operator’s diagnosis and while she says she is more in control of her symptoms, her condition has ‘dramatically’ changed her life.
She says she no longer recognises her face in the mirror and some days struggles to leave the house – while videos show how it appears she constantly winks at people as only one eye can blink now. Emma is now raising awareness of her RHS diagnosis and advises others to see a specialist if they have been diagnosed with the same condition.
Emma, from Brantham in Suffolk, said: “I had been working a lot and burning the candle from both ends a little bit. They don’t really know why a person develops Bell’s Palsy but Ramsay Hunt Syndrome is more brought on by the shingles or chickenpox virus.
“They believe that after I had chickenpox the virus planted itself in my ear canal and has been lying dormant in there since I was a child. I had a lot of personal stress and they think that where I have been run down the shingles develop in my ear canal which has caused inflammation and crushed my nerves.
“At first it was just my mouth and then I went down to see my fiancé and kind of made a joke out of it saying I think I was having a stroke. He went grey and said I think we need to get you to A&E. I rang 111 instead and they said they were going to send an ambulance right away. I have kind of grown up with a dark humour so I tried to laugh it off. The enormity of it was not breaking through.”
When paramedics arrived on the morning her face became paralysed, they carried out tests on Emma before rushing her to A&E where she was diagnosed with Bell’s Palsy and prescribed a 10-day course of ‘intense’ steroids. But the 35-year-old says her symptoms worsened over the next 48 hours to the point where she struggled to eat, speak and began to experience ‘excruciating’ pain in her ear.
And four weeks later when the pain continued, she booked an appointment with a private specialist who re-diagnosed her with Ramsay Hunt syndrome (RHS) and prescribed her antivirus medication. According to the NHS, Bell’s palsy is a temporary weakness or lack of movement that usually affects one side of the face and with steroids most people get better within six months.
On the other hand, Ramsay Hunt Syndrome is a rare condition where shingles affects your facial nerves causing weakness on one side of your face and sometimes hearing problems. Since her RHS diagnosis, Emma has been off work and trying different forms of meditation and exercise to help relax her body to help reverse her symptoms.
She says there is no guarantee her face will return to normal but she has been put on the waiting list for nerve transfer surgery which enables healthy nerves to be reconnected to the damaged ones in her face. Emma said since her diagnosis her eyesight has deteriorated and she has to wear glasses to protect them from the sun and tape her left eye shut at night as she can’t blink.
Emma said: “I’ve been living with my symptoms for three months now. Physically I look completely different. I am quite a bubbly and smiley person and now I can only smile on one side of my face.
“Because of the imbalance in my ear and one of them not working properly and neither is my eye I get a lot of dizziness. I’m quite an active person and I work for the fire service but I can’t work at the moment.
“It’s dramatically changed my life. I can’t do the things I want to do. It’s sad when I look in the mirror and not recognize the person looking back at me. Some days are easier than others. If I feel upset, I just want to stay in the house. Other days I’ll force myself to get up and out. It’s frustrating and difficult and I just want my life back and my face back.”
In June 2022, Canadian singer Justin Bieber announced he had been diagnosed with the rare neurological disorder and had to cancel all of his upcoming shows. Emma is now raising awareness of her own RHS journey and advises people suffering with similar symptoms to push to be prescribed both antiviral and steroid medication from the start to cover all basis’.
Emma said: “With the recovery of the nervous system it is a really long, slow and unknown process. They said rest and as little stress as possible can help. If my face does come back it’s because I’m relaxed and resting.
“It’s one of those conditions where there is so little known about it and everyone is different. I’m quite an active person and I’m in my mid 30s so age is in my favour as people that usually get this are 50 or 60 plus.
“If you’re going to the doctors [with these symptoms], I’d say to ask to be prescribed the steroids and the antivirals as then you’re giving yourself the best chance [of recovery] just to cover for both scenarios. I’d advise to see a specialist straight away as normal doctors are great but they don’t always have in-depth knowledge into a condition [like this]. The specialist was able to give me a lot more tips and pointers and help me understand what I was going through.”
In June 2022, Justin Bieber announced he had been diagnosed with the rare neurological disorder and had to cancel all of his upcoming shows. Fortunately, nine months later the Canadian singer took to Instagram to tell fans he had overcome his facial paralysis diagnosis and got his smile back.