A mum with a rare ‘vampire disease’ has revealed she is left in agony when exposed to sunlight.
Samantha Coster has porphyria, a condition that inspired vampire tales as Count Dracula, who was said to have had the same disease.
When exposed to sunlight, the 39-year-old is left in “pain worse than childbirth” and has to hide indoors for days.
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But her children – Abigail, 12, Alex, 10, and nine-year-old, Alyssa – compare her to the characters in Twilight and think their mum has special powers.
“It starts with tingling as soon as I step out into the sun,” Samantha, from Milton Keynes, told Need To Know.
“Within five or ten minutes, the pain and itching begin and I can’t leave the house for about three days because I’m in severe pain.
“It isn’t like any other pain I’ve ever felt. It’s the most severe pain I’ve ever felt. It’s worse than childbirth. It’s agony.
“A hot shower is painful, but it can make the reaction come down so I have one or two days of pain rather than three or four.
“Sometimes my hands and feet swell, but apart from that it’s all internal.”
According to the NHS website, porphyrias are a group of uncommon disorders that are caused when there are problems with the production of chemicals called porphyrins in the body.
Symptoms include sensitivity to sunlight, fatigue, pale skin and an aversion to garlic, which are also associated with vampires.
She said: “People call it the vampire disease because of the myths that vampires will die if they go out into the sunlight.
“When the kids watch Twilight, they always talk about the amazing things that the vampires can do, like move really fast and they expect me to be able to do it.
“I tell them that I just can’t go out into the sunlight and I’m not an actual vampire.
“We do laugh about it. When the sun is out I say ‘I’m a vampire again’.”
Samantha has to wear protective clothing and carry a sun umbrella with her at all times.
She said: “I wear long sleeves and trousers, so all you can see is my face and I take an umbrella out to protect it.
“I wear the strongest suncream I can find that has zinc in it.
“It really affects my life. I have to shadow hop. If it’s really sunny, I stay indoors.
“I can’t even do the school run. In the morning, people grab their stuff and head out of the door, but I have to layer up.
“I hate the way people stare at me when I’m all dressed up in the middle of summer.
“People look at me like I’m the weirdest thing in the world.”
Samantha says she’s always been really pale and has to take vitamin D and iron supplements to make up for the nutrients she’s lacking because she can’t get them from the sun.
She says the hardest part of the condition is having to miss out on trips to the beach and park with her children and husband Timothy, 35.
Samantha said: “The hardest bit is not being able to do things with the kids.
“My husband or friends take them to the beach and park and I can’t go. It’s difficult emotionally.
“I’ll never be able to go out and play with the kids or go for sunny walks.
“The beach is the worst place in the world for me because there’s the sun, it reflects off the sand and the sea so it’s threefold.”
Samantha was diagnosed six years ago but has struggled with symptoms since she was four.
She said: “When I was four, my mum took me on a camping trip to Devon.
“I started screaming in pain so my parents rushed me to the doctor. They thought I had sunstroke.
“It happened every single year multiple times. I would go in the sun and start crying. I was seeing the doctor three times a year.
“When I was eight, my mum took me to the beach and my hands and feet swelled up.
“She took me to the hospital in a panic. I was screaming in agony. They said it was sunstroke again.
“For a long time, there was no explanation so I just had to wait and hope for the best and I didn’t know if it would go away.
“It was hard to get a diagnosis. I’ve tried to learn as much about it as I can so I can get by.
“My mum was my rock and did everything she could to get me diagnosed.”
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