Samara Rose Ingraffia is a 25-year-old woman from Michigan. Recently, she’s become housebound.
She has Man on Fire syndrome, which is just about as terrible as it sounds. Scientifically, it’s called erythromelalgia.
Samara developed the condition at age nine. However, it took her several more years to be properly diagnosed. Her father also has the condition.
After over 100 doctors, her illness was finally explained to her. After that, her life became irreversibly changed.
She can only withstand temperatures up to 60 degrees Fahrenheit.
‘When I get into temperatures above 62, 63 degrees Fahrenheit,” says Samara, “Especially if I do any sort of movement, it feels like I’m in an oven.
Both Samara and her father suffer from erythromelalgia and Renauld’s disease, though Samara’s condition has gradually grown worse than her father’s.
Renauld’s causes pain as well. Her father, Brian Ingraffia, has done his own research on it, and described it this way:
“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.”
“When I was a kid before this started, I used to be outside all the time,” says Samara. “I have definitely missed out on life a lot. It’s so hard to imagine what normal life is like, it’s been so long.”
Both father and daughter have tried every treatment imaginable for their condition, but they say it doesn’t work.
“There is nothing that lessens the flare-ups and absolutely nothing that can help lessen the pain,” says Samara.
Her mother, Ariella, spends much of her time contributing to their caretaking, as do the rest of their family.
“Samara can groom herself and clean herself but I have to do an awful lot for them both,” says Ariella. “All of their food has to be microwaved because they can’t be near an oven.”
They’ve looked into stem cell therapy, but at $60,000, it’s more than the family can afford.
“It really helps if you’re rich when you’re sick,” says Samara.
