Imagine having a condition so rare that stepping out into sunlight causes unbearable pain. This is the reality for individuals with Erythropoietic Protoporphyria (EPP), a condition so unusual it’s often dubbed ‘the vampire disease’. According to the National Institution for Rare Diseases (NORD), EPP is a “rare inherited metabolic disorder caused by a deficiency of the enzyme ferrochelatase.” Symptoms can be brutal, with sufferers experiencing extreme pain when exposed to sunlight.
The NORD website details, “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.” Given its rarity, many may not be familiar with EPP. A report from 2009 estimated that the disorder affects between one in 75,000 to one in 200,000 people globally.
Recently, a Redditor with EPP opened up about his daily struggles on the platform, inviting others to ask him anything about his life with the condition. “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) 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…”
When asked about treatments, the Redditor, who is based in the UK, mentioned, “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.” Curious users also inquired how he manages daily life, to which he explained his use of protective gear. “I shop online and I avoid going out during the day unless I really have to,” he shared, highlighting his use of face coverings and gloves to shield himself from the sun’s rays.
The conversation took a lighter turn when another Redditor joked, “Nice try Dracula, trying to befriend some new people to drink,” hinting at the nickname ‘the vampire disease’. The man humorously engaged, confirming that EPP is sometimes linked to the folklore of vampires and speculated that “it is believed that people with EPP lead to the initial myth of vampires (pre Dracula).” While he didn’t directly deny being a vampire, the playful exchange underscores the challenges and the community support found in sharing these rare experiences.