“It’s been three years and it hasn’t returned, but I haven’t fully recovered either. I genuinely live in fear. It’s ruined my life in so many ways. I’m scared it will happen again”.
Selma Abbey was 29 and pregnant with twins when Bell’s palsy hit but she is not alone. Bell’s palsy is a rare, life altering condition that causes paralysis of the muscles in one side of the face triggered by damage to the facial nerve.
“When I was diagnosed there was no support, it really was a nightmare. There’s speculation pregnant women are more prone to it and more likely to not make a full recovery. When the twins arrived I was so happy but photos were out of the question. I cried for days. I felt like I had changed inside and out, top to bottom. I found it all so hard.
“I suffer with Synkinesis meaning my muscles are very tight and uncomfortable. I’m now receiving Botox and I’m on a rigorous physiotherapy programme to relieve tension in my muscles”.
The cause of Bell’s palsy is unknown yet it affects around 22,000 people in the UK a year, leaving 20% of those with serious long-term problems.
The human face communicates in a way words cannot. We use it to see the world and to be seen by it, but we are unaware of how amazing it is until it stops working.
Sally Glover, Physiotherapist and co-founder of Facial Therapy Specialists-UK, explained it is vital for patients suffering facial weakness to report to their GP or A&E within the first 48 hours. If symptoms last more than eight weeks the patient should be referred to a specialist. If after eighteen months there is no improvement, a facial nerve graft, botox, reanimation or plastic surgery should be offered to improve facial symmetry.
One third of sufferers are told nothing can be done to treat Bell’s palsy, but this is not the case.
Corinne Duhig, 63 from Cambridge was 58 when a build up of earwax created pressure on her facial nerve, triggering Bell’s palsy. This caused impairment to her speech, forcing her to give up forensic practice. “I feel I’ve lost myself. I can’t bear to look at my own wedding photos.
“I expected rapid and complete recovery but with no treatment available to improve my appearance, I became bitter and unsociable. I was known for my big, spontaneous grin but now avoid smiling, I feel it’s repulsive when I do”.
Bell’s palsy affects people in different ways and has a massive impact on lifestyle.
Rhiannan Mcloughlin, 23, from Leicester was told she might never recover from Bell’s palsy. Her condition appeared last year after suffering from shingles. She was later referred to a facial specialist who found swelling of her nerves and facial muscle, forcing her to be signed off work and defer her university course.
“It was very difficult to live with, affecting my work and social life. I was unable to drive or read due to blurred vision and I had to move back in with my parents. I felt my independence was taken away from me.
“The condition was affecting many areas of my life, I felt completely out of control. I’ve made progress with the botox but I’m still unable to blink with my right eye”.
A recent study found that without treatment, only 57% of patients achieve full recovery within 12 months.
Two years ago, Donna McConnell, 48, Derry, suffered complete loss of movement on the right side of her face for six months. “I wouldn’t describe myself as vain but when Bell’s palsy hit, things became very challenging. I decided I could either lock myself away or continue with my life.
“Instead of producing saliva, my eye waters and I constantly suffer with a numbness around my nose, mouth and cheek. My speech has also been affected.
“Of course people are curious, some just down right nosey, but I always tell people ‘Never take your smile for granted’. I will always miss that. I’d love to be able to smile again”.
Not all cases of Bell’s palsy are permanent and only 9% of cases reoccur. Lorraine Clapham, facial rehabilitation specialist at University Hospital, Southampton said: “I always stress that if someone has a sore throat or ear infection, to start treatment early to help prevent reoccurrence”.
Bell’s palsy is very rare in children. Annie Heno, 18 from Southampton, was 11 when half her face was paralysed whilst on holiday. She was rushed to hospital and given antibiotics until her return to the UK.
Chris Heno, Annie’s father said: “We were told there was nothing they could do. We had no idea what was going on, they just kept saying ‘brain’. We thought the worst”.
Once back in the UK, she underwent numerous scans and her condition began to improve, until 3 months later when it reoccurred.
Bell’s palsy has a disfiguring effect on your face. Suffering with such a condition is hard for anyone let alone a child. I could see the tears in Annie’s eyes as she spoke to me: “I didn’t tell anyone at first. I was embarrassed, worried and scared. I thought I might stay like that or it might get worse. I remember a girl at school kept saying I was pulling a weird face”.
Annie’s parents were informed that doctors could either operate or wait to see if the condition improved on its own. Chris explained: “We were told the operation could make the paralysis permanent and take away her hearing. We decided against it and are so glad we did. Everything is back to normal now, the only thing that stuck was that she cannot cry out of one eye”.
Facial Palsy UK was the first charity to support people with the condition. There is a false public perception that facial palsy is a cosmetic issue rather than a functional one, however it can affect communication, eating, drinking and sight.
Karen Johnson, Charity Coordinator and Communications Officer said: “Our mission is to ensure every person in the UK affected by facial palsy has access to the best information, treatment and support available”.
Bell’s palsy can affect anyone at any age. It is a functional and psychological condition that is potentially life changing. We take for granted being to be able to eat, drink and smile in public but fail to realise what life would be like without these abilities.