Woman suffers from rare condition which means she has not been able to SMILE for over 30 YEARS
Cate Wallwork, 51, suffered facial paralysis as a teenager, but it took a long time before she was finally diagnosed with Melkersson-Rosenthal syndrome.
This affects only eight in every 10,000 people in the UK - and sufferers like Cate face a struggle to get the right diagnosis, the Manchester Evening News reports.
Cate, from Rochdale, has spoken out about the symptoms which have blighted her life in an effort to raise awareness.
She was just three when her family noticed her face had dropped.
She was diagnosed with facial palsy and her face slowly recovered. But she went on painful
cold sore s and swellings throughout her childhood - symptoms which masked the true identity of her condition.
By the age of 17 both sides of Cate’s face were affected by facial paralysis, leaving her unable to smile.
But it wouldn’t be for another two years, after her GP asked her to meet with a friend who was a Professor of Virology, that the condition which had blighted her life was correctly identified.
“He took one look inside my mouth and immediately diagnosed Melkersson-Rosenthal syndrome as causing all my symptoms”, Cate said. “He prescribed acyclovir and immediately I started to have less flare ups.
“From the age of 19 I have had no further specialist follow-up for this condition. I now work as a theatre nurse and one of my colleagues is now trying to help me access specialist help for the facial palsy.”
Cate, 51, recalled the cold sores she has as a child: “I got them all around my mouth, up my face and in my nose. My self-confidence was badly affected, I was shunned because of the scabbiness and called a lot of names.
“My eyes watered every time I ate, I called it ‘salivating out my eyes’. I had painful sores and swellings and I couldn’t smile or frown.
“You spend most of your life trying to explain why you are like you are. You hear people discussing what has happened to you, fantastical theories that aren’t true. I was in a club when I was 17 and an older man called me ‘Quasimodo’.
“When I did more online research into Melkersson-Rosenthal syndrome I found that it could be linked to Sarcoidosis. My father died at 57 of Sarcoidosis so I was quite worried. My dad also suffered a lot with cold sores as a child and I wonder now if he had the same condition but was never diagnosed.”
The charity Facial Palsy UK believes more more education is urgently needed about facial paralysis - and say many patients are being let down by delayed diagnosis and insufficient care.
Patients with facial palsy are often not taken seriously as the condition is mistakenly believed to be cosmetic, the charity says.
According to a Freedom of Information request made by them, only 12 per cent of clinical commissioning groups routinely fund surgery for facial palsy.
As part of Facial Palsy Awareness Week - from March 1 - Facial Palsy UK is calling for more awareness and better care for those affected.
Charles Nduka, the consultant plastic surgeon who founded the charity, said: “Patients across the UK are suffering from delayed diagnosis, a lack of awareness of suitable treatments amongst some health professionals, and a poor appreciation of the psycho-social implications of losing the ability to smile and the use of one or both sides of the face.
“Clearly there is a need for more awareness of all causes of facial palsy given the life-changing consequences. It’s important that patients are treated holistically by experts because often other symptoms are missed.”
