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Clare Mount will always remember the evening of Christmas Day 2003 as "the night that stole my smile".
The day after Christmas, she woke up with Bell's palsy, a nerve disorder that causes paralysis of a part of the face.
In the UK, this disease affects up to 24,000 people a year, but the UK Palsy UK Facial Charity said that a lack of awareness prevented many people from getting treatment quick.
In Wales, the Royal College of General Practitioners (RCGP) said doctors should recognize him and urged patients to seek help quickly.
Clare, 40, of Crumlin, Caerphilly County, has been living with Bell's palsy for 15 years, and sometimes she has left a shadow of herself.
"It makes me feel horrible, it's devastating and I'm hiding people, I try to act as if it does not bother me, but it's your face", a- she declared.
"It's not a threat to life but it changes your life."
An employee of the Housing Association said that people sometimes look at her and that strangers called her cruel, such as "freak", "tramp" and "Sloth from the Goonies".
In eight out of ten cases, people recover from Bell's palsy, with the effects on the face subsiding in a few weeks or months.
But for the rest, like Clare, it persists.
In these cases, the patient's chances of recovering in the long term increase dramatically if steroids are given within 72 hours of onset of paralysis.
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Clare Mount
Clare said that she had always been a very smiling person, but that Bell's paralysis made her less confident in the idea of smiling at people.
Clare went to the hospital when Bell's palsy was struck for the first time and the doctors alleviated her family's fears that she had a stroke.
She was advised to see her GP, but her surgery was closed for the holiday season and she was not able to get a diagnosis or steroids within 72 hours.
"It would have greatly reduced it," said Clare.
"Each case is different, so it may not have completely faded, but it certainly would have meant that I should not have suffered as much as I had experienced in the past. in recent years. "
What is Bell's palsy?
The most common facial paralysis, it causes temporary weakness or paralysis of the muscles on one side of the face, the symptoms vary from person to person.
The weakness of one side of the face can be described as partial paralysis, mild muscle weakness or complete paralysis, which represents no movement.
Bell's palsy can also affect the eyelid and mouth, making them difficult to close and open.
It is unclear exactly what causes Bell's palsy, but links have been made with viruses.
Symptoms may include facial looseness, inner ear pain, chronic pain, difficulty eating and talking, and the inability to close an eye.
sources: NHS and Facial Paralysis UK
People with Bell's Palsy can also get help with additional specialized treatments, such as surgery, Botox and physiotherapy.
Clare said that over the years, GPs have repeatedly referred her to services for the ears, nose and throat, unable to help her.
She said: "There is definitely a lack of awareness because doctors do not know where to tell you, they can not tell you where they do not know."
BBC
Do not abandon. I have been there for 15 years and I have not stopped [trying] to find something that will work for me. I always said that I was facing my day.
But after getting online advice from another Bell sufferer, Clare recently learned of the existence of a team of facial paralysis specialists at Morriston Hospital from Swansea and got an appointment after forwarding the information to her GP.
"It was mixed feelings at first," she said.
"I was very angry at being able to get this help 14 years ago, because the doctor was there for a long time, but now I feel that there is a light at the end of tunnel."
The advice came from Marcus Horton, 31, from Pembrey, Carmarthenshire; He was a sniper based in England when he developed Bell's palsy in January 2017.
Marcus Horton had to abandon a career in the military when he learned that he was suffering from Bell's palsy
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Marcus stated that he was first diagnosed by mistake as suffering from meningitis – despite Bell's suggestion of paralysis to the doctors – and that, when his condition had been correctly identified, it was also too late for receive steroids.
The father of three said it meant that he could not finally continue to occupy the post of his dream and let him suffer physically and mentally while he was trying to get away from it. adapt.
"To be honest, it was a bit of a roller coaster ride," he said.
"I have my low days and it's hard not to think about anxiety and depression. It affects me now, [but] not as much as when it first happened. "
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Marcus Horton
Marcus Horton says that it took him time to get used to his face since the development of Bell's palsy while he was in the army
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Marcus Horton
Marcus said he and his wife Hannah had a look at Bell's paralysis en route to his first medical appointment.
Marcus, who is now working for a utility company, said anyone suspected of Bell's palsy should immediately receive steroids as a precaution and more specialized treatment centers are needed.
In the UK, a recent survey of 421 people with facial palsy found that 19% of them had been misdiagnosed initially, while 41.7% said that their GP did not have a diagnosis. had not known who or where to guide them.
And one in five people with Bell's palsy said it had taken them more than a year to see a specialist, according to a British study by Facial Palsy.
Debbie Byles, a charity administrator, said, "The faster the treatment, the better the results for the patient, the longer it lasts, the more difficult the symptoms will be."
According to Dr. Mair Hopkin, facial paralysis can be "devastating" for people with Alzheimer's disease
Dr. Mair Hopkin, co-chair of the Royal College of Wales in Wales, said that Bell's palsy was "well known" to most doctors and "fairly easy to recognize", although it could be confused. with a stroke.
She said that an early diagnosis and the use of oral steroids were essential to increase the chances of long-term cure, but that other specialized services could actually not help much.
"Unfortunately, the evidence that these extra treatments will make a difference in the long run is very slim," she said.
"Patients need to be assured that for the most part, they will recover.
"These are the few unfortunate patients who need a lot of ongoing support and sometimes ongoing psychological support from their local GPs."
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