A man with Erythropoietic Protoporphyria has shared what it’s like to have the condition

A man with an extremely rare condition has shared what it’s like to have.

The individual in question has something known as Erythropoietic Protoporphyria (EPP) which is a ‘rare inherited metabolic disorder caused by a deficiency of the enzyme ferrochelatase’, as per the National Institution for Rare Diseases (NORD).

Symptoms include feeling severe pain when exposed to sunlight.

Erythropoietic Protoporphyria is also known as ‘the vampire disease’. (Getty Stock)

“On sun exposure, patients may first experience tingling, itching, burning of the skin,” the NORD website explains. “After continued exposure to light, the skin may become red and swollen. The hands, arms, and face are the most commonly affected areas.”

If you’ve never heard of EPP or known of someone having the condition, that’s because it’s super uncommon.

As of 2009, a report estimated that the disorder had a prevalence of one in 75,000 to one in every 200,000 people.

With its rarity in mind, a Redditor has taken to the social media platform to share what it’s like to live with EPP.

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

Opening the floor to inquisitive Redditors to ask him questions about it, the user 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 hyper sensitivity to daylight. This means if I am exposed to daylight (in summer) or direct sunlight (in winter) then 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 asked if there are treatments for EPP, to which the British-based user replied: “The 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.”

Someone else asked if he’s been able to find ways to ‘function normally’. The EPP sufferer explained that he’ll often wear a face covering and gloves to protect him from sunlight.

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

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

“Nice try Dracula, trying to befriend some new people to drink,” quipped a different Redditor. “Just kidding, I’m assuming you are always the first in line to work night shift.”

The man went on to confirm that EPP is sometimes referred to as ‘the vampire disease’ and that ‘it is believed that people with EPP lead to the initial myth of vampires (pre Dracular)‘.

He didn’t actually deny that he wasn’t a vampire, though…