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Sam PhelpsBritish marine engineer with erythropoietic protoporphyria
Country:
 Great Britain |
Content:
- The 'Vampire of Reality'
- Extreme Protective Measures
- "I have to plan around keeping cool and take painkillers constantly."
- Defying Limitations with Determination
- Diagnosis and Childhood Suspicions
- Societal Misconceptions and Support
- Light Therapy and Future Plans
A British Marine Engineer Living as a 'Real-Life Vampire' Due to Sun Allergy
Sam Phelps, a 27-year-old marine engineer from Bristol, suffers from a rare and severe allergy to sunlight known as erythropoietic protoporphyria (EPP). Any exposed skin, even in winter, causes an excruciating rash and intense burning pain.
The 'Vampire of Reality'
"It feels like someone's holding a flame to my skin, watching it burn and melt," Sam says. "I've had issues before where I've covered my face and security have thought I'm a robber or something."
"I'm like a real-life vampire," Sam adds. "My mates know I struggle going out in the sun, so they jokingly call me a vampire."
"It's actually quite a good way of explaining it to people why I can't be in the sun."
Extreme Protective Measures
Sam must wear gloves, trousers, long-sleeved shirts, and a mask covering most of his face whenever he steps outside, regardless of the season.
"I have to plan around keeping cool and take painkillers constantly."
For EPP sufferers, simple tasks like commuting to work or socializing on weekends involve meticulous planning and knowledge of the weather forecast.
Defying Limitations with Determination
Despite the limitations imposed by EPP, Sam is determined to live life to the fullest.
"If someone thinks I look like a tit walking around in the middle of summer wrapped up from head to toe, so be it," Sam insists.
"I just couldn't enjoy spending time with my mates or my girlfriend if I didn't take precautions."
"On really hot days, I can't function properly, but I can try and live a normal life as much as possible."
"But it's always in the back of my mind. What if I collapse? What if I get ill? Going out in the sun when it's hot is a bigger risk."
Diagnosis and Childhood Suspicions
Sam was diagnosed with EPP six years ago after a family holiday in Cornwall resulted in hospitalization.
"My hands and face started swelling up," Sam recalls. "After a few hours, I was in so much agony and looked so bad that my dad drove me to our local hospital in Falmouth. That's when they diagnosed me with erythropoietic protoporphyria, or 'vampire disease.'"
Sam believes EPP had been affecting him since childhood, even though it wasn't diagnosed until he was 21.
"I reacted to sunlight from the age of three," Sam says, "but no one ever tested me for EPP."
"My parents are quite big sun worshippers, and growing up, being outdoors didn't really bother me."
"Anytime my skin flared up, we always thought it was something in the environment or something I'd eaten."
Societal Misconceptions and Support
Sam's unconventional attire can sometimes lead to misunderstandings."I definitely get funny looks when I'm all covered up," Sam says.
"I've had issues in the past when I've covered my face, with security thinking I'm trying to rob someone."
"If I'm just nipping into a shop, I'll take my mask and gloves off first."
Thankfully, Sam's girlfriend, 22-year-old Amy Dutch, whom he met on a dating website in September 2016, is unfazed by his 'unusual outfit' and tendency to seek shade.
"I didn't realize EPP was a real condition," Amy admits. "I thought it was something made up for vampire books."
"But it doesn't stop us having a good time. We just have to plan ahead more and find spots in the shade to sit."
"I'm determined that EPP is not going to change how I feel about Sam."
Light Therapy and Future Plans
Since his diagnosis, Sam has undergone light therapy three times a week for eight weeks each summer to help his skin tolerate light.
Light therapy cannot cure EPP, but it can make the symptoms less severe.
"The treatment is like torturing myself," Sam admits. "But I don't want to live my life with restrictions."
"This summer, I'm going to Torquay with my mates. I know it's going to be sunny, but I am determined to enjoy myself and make it work, even if I have to cover up."
