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Samara Rose Ingraffia suffers an incredibly rare disease called erythromelalgia or Man on Fire syndrome, which makes her skin feel like it is constantly burning. In fact, Samara’s condition is so delicate that a change in temperature gives her the feeling that she has second-degree burns. To save herself from the excruciating pain, Samara has to spend her days indoors.
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Samara also suffers from Renauld’s syndrome, another rare condition that causes her body to dramatically react even after just a very slight drop in temperature. She has to stay in a room with a regulated temperature of 17°C to prevent extreme pain.
Her suffering started when she was 9 years old. Her father inhibited the same two condition, but it is known to have multiple causes and not just because of genetics. Among the causes for erythromelalgia are blood disease polycythemia, erythromelalgia-associated poxvirus, and even mushroom virus. There are no known causes for Raynaud’s disease.
“It affects everything in my life. It’s all consuming and it’s just maddening to be constantly burning alive. It’s hell on earth,” the 25-year-old lamented.
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Samara has been homeschooled since contracting the disease. Her father, Brian, also with the same disease, feels the pain his daughter is going through. He, too, is forced to live indoors after working several years as a college professor.
“Knowing that my daughter has to go through even more pain than me is absolutely heartbreaking. Between the two of us we’ve tried every treatment that’s been used for erythromelalgia, but we have found absolutely nothing that helps,” Brian told the Mirror.
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The pair has tried every option out there. But there has been no known medical cure developed yet. Brian Ingraffia has continuously done his own research. “Whenever there’s a slight increase in warmth, the body massively overreacts and floods blood to the skin. The blood then gets stuck in the skin, which leads to horrific nerve pain,” he said.
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The breadwinner in the family is his wife and Samara’s mother, Ariella, who works all the way in California to pay for their needs. She spends just ten days per month to tend to the needs of her family. Like her husband, she cannot bear to see the pain her daughter goes through.
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The family has been looking into stem cell therapy, which can cost around $60,000. Although it has yet to prove itself as a cure to her painful disease, Samara is just happy to be looking forward to something, but the money proves to be an issue for now.
“There’s certainly no guarantee, but it seems the most promising. But who has that kind of money. It really helps if you’re rich when you’re sick,” she shared.
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