A teenager with an unusual brain disorder that causes her to collapse when she smiles has revealed that she spends less time with her funny friends.
Billie Hodgson, 17, suffers from cataplexia, which causes sudden muscle paralysis and can strike when she giggles.
Her unusual ailment is a complication of narcolepsy, which affects approximately 22,500 Britons. In addition to laughter, it can also be caused by excitement, anger, or even surprise.
Billie, from Sheffield, has reduced the amount of time she spends with friends because she feels guilty for not being around herself.
She said: ‘I am a bustling person, so it is very strange to start thinking that I cannot laugh. I feel like I can’t be myself.
Billie Hodgson, 17, suffers from cataplexy, an unusual brain disorder that causes her to collapse when she smiles
“My friends don’t try to be funny, and when they make me laugh, they feel like they have to apologize.
‘When I am with them, I am usually not so involved in funny situations to prevent cataplexia and especially towards those who are not so familiar with it.
“We make jokes about it like friends, because it’s funny in itself, and I have to make light of it.
“When we are eating and everyone at the table is smiling, everyone is trying to stop, but then the silence makes you laugh.”
She added, “It’s so hard to explain what it feels like when I collapse, it’s like you have no control over your body – I have no control over what happens.”
“I can’t talk or comment about anything – but the most frustrating thing is that I am conscious. I shake and I can’t hold things.
Billie has to prevent her from being teased by her joker brother Declan (photo) who is still trying to make her smile
WHAT IS CATAPLEXY?
Cataplexia is a symptom of narcolepsy, a long-term condition that causes problems with normal patterns of sleeping and waking up.
Cataplexia is the sudden, temporary muscle weakness or loss of muscle control.
Typical symptoms are:
- the mouth falls open
- the head sinks down
- legs collapse uncontrollable
- unclear speech
- find it difficult to focus or see twice
Cataplexy attacks are usually caused by an emotion such as excitement, laughter, anger or surprise.
Attacks can take a few seconds to a few minutes.
Some people with narcolepsy have cataplexy attacks once or twice a year, while others experience them several times a day.
In an attempt to prevent attacks, some people may become emotionally withdrawn and socially isolated.
Source: NHS choices
“It causes general excitement, and since my diagnosis the triggers have become more sensitive.”
Cataplexy affects people suffering from the sleep disorder narcolepsy, which affects the brain’s ability to regulate the normal sleep-wake cycle.
It means that patients often spend a lot of time in bed and suffer from extreme sleepiness during the day.
Billie is so tired that she has to go to sleep at 7 pm to try to get a good night’s sleep. But she often tosses through the night and wakes up for splashes that last 30 minutes to two hours.
She also needs to take a nap in the afternoon to make up for lost sleep.
The exact cause of cataplexia is discussed, but the prevailing theory is that a hypocretin hormone deficiency is the cause.
Hypocretin plays a crucial role in promoting waking during the day. When the brain is deprived of it, it seems as if communication with the rest of the body can stop even at the least trigger.
Cataplexy attacks vary in severity, with mild episodes resulting in drooping facial muscles or eyelids, unclear speech and double vision. More serious attacks can cause a total collapse of the body.
They generally last less than two minutes, and can only last a few seconds, although some people have repeated cataplexy attacks that last for up to 30 minutes.
During both mild and severe attacks, the person remains fully conscious, but he often feels ‘locked up’ in his body.
Billie, who lives at home with mother Sharon, 49 and sister, Harley, 14, was not diagnosed with cataplexy until March last year.
It came as a surprise to the young person, who had no symptoms during her school years and often laughed.
She says that her first memory of cataplexy collapsed in the high school dining room when she was around 14.
Billie remembered her first attack and said, “I remember that I once walked through school with a friend and we laughed, then I just fell to my knees.
“Everyone thought I was tripping, but I knew something was wrong. At first we didn’t think it was that serious and the doctor told me that everyone shakes when they smile.
“But when I was diagnosed, I felt mixed emotions. I was relieved that I finally knew what it was and then could start treatment, but at the same time scared because I didn’t know how much it would affect my life.
“It is also a lifelong illness, which meant that it was quite big to accept.”
There is no cure for cataplexia and the only available treatment for the condition involves taking daily sleep-inducing medication to control narcolepsy.
In addition to forcing her to avoid social situations, Billie’s dream of becoming an obstetrician is thwarted by the rare disease.
She now wants to speak out to unravel myths about the unusual disorder.
Billie said: ‘My dream was to become an obstetrician, but I cannot do that because I am losing control.
‘It keeps me from doing what I really want to do and now I don’t know what to apply for at the university. I’m afraid to go out and I can’t drive.
‘But I want to speak up and raise awareness because many people don’t know that.
“I want to show that cataplexy is not what people think stereotypically – it can have a major impact on someone’s life.”