Man With Ultra-Rare 'Vampire Disease' Reveals What It's Like Living With The Condition

A man with an extremely rare condition has shared his experience of what it’s like to live with it.

This individual suffers from something known as Erythropoietic Protoporphyria (EPP).

According to the National Institution for Rare Diseases (NORD), this is a "rare inherited metabolic disorder caused by a deficiency of the enzyme ferrochelatase."

Living with EPP is far from easy. The symptoms include severe pain when exposed to sunlight.

Erythropoietic Protoporphyria is also known as 'the vampire disease' Getty Stock

The NORD website elaborates, "On sun exposure, patients may first experience tingling, itching, burning of the skin.”

“After continued exposure to light, the skin may become red and swollen. The hands, arms, and face are the most commonly affected areas."

These symptoms can make everyday activities a significant challenge.

If you’ve never heard of EPP or known anyone with the condition, it’s because it is extremely uncommon.

A report from 2009 estimated that the disorder has a prevalence ranging from one in 75,000 to one in every 200,000 people.

The rarity of this condition makes it a topic of interest and curiosity for many.

With this in mind, a Redditor decided to take to the social media platform to share his firsthand experience of living with EPP.

Exposure to sunlight can be extremely painful for EPP sufferers Peter Cade/Getty Stock

He opened the floor to curious Redditors, inviting them to ask questions about his life with the condition.

He wrote, "I have a rare genetic disorder called Erythropoietic Protoporphyria.”

“This is a metabolic disorder which causes liver damage in some patients (including me).”

“The main day-to-day symptom, however, is hypersensitivity to daylight.”

“This means if I am exposed to daylight (in summer) or direct sunlight (in winter), I have about 2-3 minutes before I am in unbearable pain that lasts for around a week.”

“When I’m in that much pain, I can’t dress myself, eat, drink, or even have room lights turned on. Ask me anything..."

One person inquired if there are any treatments available for EPP.

The man explained that he uses face and hand coverings to protect himself Reddit/u/Right-Question-7476

The British-based user responded, "There is a treatment called Scenesse which gives a minimum of 7 additional minutes in sunlight (which sounds small but would be life-changing)"

"..but you can’t get it in England because [the National Institute for Health and Care Excellence] won’t pay for it."

This highlights the frustration and challenges of accessing necessary treatments for rare conditions.

Another Redditor asked if he has found any ways to ‘function normally’.

The EPP sufferer explained that he often resorts to wearing a face covering and gloves to protect himself from the sunlight.

"I shop online and I avoid going out during the day unless I really have to," he added.

This sheds light on the various adjustments and compromises he has to make in his daily life to manage his condition.

Adding a bit of humor to the conversation, a different Redditor quipped, "Nice try Dracula, trying to befriend some new people to drink.”

“Just kidding, I’m assuming you are always the first in line to work night shift."

The man confirmed that EPP is sometimes referred to as 'the vampire disease' and that ‘it is believed that people with EPP led to the initial myth of vampires (pre Dracula)’.

Interestingly, he didn’t actually deny that he wasn’t a vampire, though...