“Vampire” teen forced to spend her childhood shut away in the dark – because she was allergic to light
A teen who shares a surname with Twilight vampire Edward Cullen is recovering from a rare illness that means she’s spent her teenage years ALLERGIC TO DAYLIGHT.
Hollie Cullen was diagnosed with the rare condition aged eight – and the illness left her with a crippling intolerance to natural and artificial light.
It was so bad that Hollie, 18, was forced to spend her life shut away in the dark, wearing sunglasses even when the lights were off.
But now, Hollie finally has her condition under control – and she has finally been able to brave daylight to go on holiday for the first time in 14 years.
Hollie, from Barnstaple, Devon, said: “I was diagnosed with ME when I was eight, and I was so ill that I had to end up leaving school.
“I was exhausted all the time, but one of the worst symptoms was my severe light intolerance – it was like an allergy.
“Whenever I came into contact with any light, whether it was daylight or artificial light, I was left in excruciating pain.
“My eyes would burn and my head would pound, it was like having a really severe migraine that never went away, not matter what I did.
“Any glimmer of light would make me really unwell – I suffered with nausea and vomiting, and I would get dizzy and collapse.
“It made me really upset and frustrated – I was shut away in the dark all the time, even when the lights were off and the curtains were drawn I’d have to wear sunglasses because it was so bad.
“I just wanted to rip open the curtains and see the world, but I couldn’t because it was too painful.
“The light feels like it burns you, it was like being a vampire.
“Because of my surname, and the fact I couldn’t go out in the sun, a lot of people have made jokes over the years and said I was like a vampire from Twilight.
“If I ever was in sunlight for short periods my skin is so pale that it even looked like you could almost see the sun reflecting off my skin – just like the way the vampires glitter and sparkle in the film.
“I spent a lot of my childhood and early teenage years shut away in a dark room – I didn’t really have any friends because I was too ill to go to school and I couldn’t go outside.
“I was very alone – I had no one apart from my family, and even then I was too ill to be with them a lot of the time.”
The invisible illness blighted most of Hollie’s childhood, leaving her alone as she struggled to make friends because she couldn’t go out and play like other children.
Hollie said: “As a child it restricted everything I did – I didn’t have a normal childhood for a very long time.
“I couldn’t go to the park or the zoo with my family, I couldn’t do after school activities – I couldn’t even get up to go to the toilet by myself.
“I would just spend all my time on the sofa or in bed, constantly in the dark.
“I’d come home from school exhausted, I would go straight to bed and sleep right through until the next morning.
“I had to leave school aged eight because it made me so ill – I’d had it for around a year before I was properly diagnosed.
“I never got the chance to have many friends because I was always shut away in the dark.
“It was a horrible feeling – growing up I’d see other girls going out with friends, and as I got older getting glammed up to go on nights out and I never got to do any of that.
“I never used to tell anyone about my ME – there’s a lot of stigma surrounding it, people don’t see it as a genuine illness and think sufferers are just lazy.
“It was so bad I couldn’t even stand, and had to use a wheelchair to get around.”
Now, 10 years after her diagnosis, Hollie has finally got her symptoms under control and has mostly recovered from the crippling illness – and although she still has the occasional off-day, she has managed to enrol in an art and design course at Plymouth College of Art.
Her recovery has been so remarkable, that she’s even managed to go on her first holiday in 14 years – a trip to Amsterdam with her friends to celebrate her eighteenth birthday.
Hollie said: “I’m so happy I’m finally able to lead a normal life now.
“Now I’ve managed to get that lifestyle I longed for when I was younger.
“I sort of grew out of it – I was lucky, that doesn’t happen for everyone.
“It was mostly just a case of getting better over time and learning how to better manage my illness, knowing how much I could or couldn’t do on both good and bad days and learning how not to push myself too hard into over-doing – but pushing myself enough where I could still do things when I felt unwell.
“I want to raise awareness about ME – it’s an invisible illness and often people just think you’re exaggerating or making it up, but it can have devastating symptoms.
“People don’t realise how serious it can be, and I want other sufferers to know that life can get better.”
Tony Britton, publicity manager at ME Association, said: “People with this horrible illness who do recover probably go into a remission, and it requires significant lifestyle changes – less stress, better nutrition, improvements to work-life balance – for the symptoms to not flare up again months or years later.
“Hollie is one of the lucky ones – there are thought to be 250,000 adults and children with ME, otherwise known as chronic fatigue syndrome, in the UK – and the vast majority just don’t recover their full strength.
“Many spend their lives in darkened bedrooms because they are tormented by bright lights, and even those with mild forms of ME never seem to shake off what feels like a nasty bout of the flu.
“Diagnosis can be a difficult and lengthy process and, although the situation is improving, many doctors are still unsympathetic – add to that neighbours, friends and colleagues who dismiss people with ME as malingerers and time-wasters and you have a pretty unpleasant cocktail, that will only disappear when research leads us to the causes of the illness, and a possible cure.”