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IN People ON 01 Jan, 2016
Samara Rose Ingraffia, 25, is suffering from erythromelalgia or Man on Fire syndrome due to which she experiences second-degree burns most of the time. She is also struggling with Raynaud's syndrome at the same time due to which her body reacts to every single drop in temperature.
The woman started developing this horrible condition at the tender age of nine. She remains now housebound all the time.
Ingraffia explained: 'I don't know what the worst part of this condition would be. 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.'
Her body suffers terribly at the temperatures higher or lower than 17 degrees Celsius.She was even unable to attend the regular school. The heat in the classrooms caused intolerable pain to her. So, she completed her studies at home itself.
She has consulted more than 100 doctors but she has not found any cure to her illnesses till date. Now she has become housebound for her whole life. She says: "It's really hard to remember what my life was like before this. When I was a kid before this started I used to be outside all the time. I was born with black hair and then I was in the sun so much I had basically blonde hair when I was a toddler.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."
Mr Brian Ingraffia, a heartbroken father explained: "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. There is nothing that lessens the flare ups and absolutely nothing that can help lessen the pain."
He explained: '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. Whenever someone with Raynaud's is exposed to cooler temperatures, the blood withdraws from the skin, causing a sort of numb kind of burning. When I get into temperatures above 62, 63 degrees Fahrenheit especially if I do any sort of movement it feels like I'm in an oven.'
The mother works in California but spends ten days every month with her family in Michigan. She says: "Samara can groom herself and clean herself but I have to do an awful lot for them both. All of their food has to be microwaved because they can't be near an oven. It's hard to think of them going through so much - I often get very upset just thinking about how much of her life she has missed out on."
Ms Ingraffia sadly said: "I did get my hopes up when we were looking into stem cell therapy but it is insanely expensive costing around $60,000.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."
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