{"id":12794,"date":"2024-06-24T17:45:32","date_gmt":"2024-06-24T17:45:32","guid":{"rendered":"https:\/\/used82.com\/?p=12794"},"modified":"2024-06-24T17:45:32","modified_gmt":"2024-06-24T17:45:32","slug":"man-with-ultra-rare-vampire-disease-reveals-what-its-like-living-with-the-condition","status":"publish","type":"post","link":"https:\/\/used82.com\/?p=12794","title":{"rendered":"Man with ultra-rare ‘vampire disease’ reveals what it’s like living with the condition"},"content":{"rendered":"

A man with Erythropoietic Protoporphyria has shared what it’s like to have the condition<\/h2>\n

A man with an extremely rare condition has shared what it’s like to have.<\/strong><\/p>\n

The individual in question has something known as Erythropoietic Protoporphyria (EPP) which is a ‘rare inherited\u00a0metabolic disorder<\/a>\u00a0caused by a deficiency of the enzyme ferrochelatase’, as per the National Institution for Rare Diseases (NORD).<\/p>\n

Symptoms include feeling severe pain when exposed to sunlight.<\/p>\n

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\"Erythropoietic<\/div>\n

Erythropoietic Protoporphyria is also known as ‘the vampire disease’. (Getty Stock)<\/cite><\/div>\n

“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.”<\/p>\n

If you’ve never heard of EPP or known of someone having the condition, that’s because it’s\u00a0super<\/em> uncommon.<\/p>\n

As of 2009,\u00a0a report<\/a>\u00a0estimated that the disorder had a prevalence of one in 75,000 to one in every 200,000 people.<\/p>\n

With its rarity in mind, a Redditor has taken to the\u00a0social media<\/a>\u00a0platform to share what it’s like to live with EPP.<\/p>\n

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\"Exposure<\/div>\n

Exposure to sunlight can be extremely painful for EPP sufferers. (Peter Cade\/Getty Stock)<\/cite><\/div>\n

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).<\/p>\n

“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.<\/p>\n

“When I’m in that much pain, I can’t dress myself, eat, drink or even have room lights turned on. Ask me anything…”<\/p>\n