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Meet The Lady Who Is Burning Alive!





Meet The Lady Who Is Burning Alive! Samara Rose suffers from Man on Fire Syndrome

A 25-year old lady suffering from an excruciating and strange skin condition called 'Man on Fire' syndrome, which leaves her suffering from second degree burns without any contact with real fire. 

25-year old Samara Rose Ingraffia suffers from erythromelalgia or Man on Fire syndrome, which makes her constantly feel like she is experiencing constant second degree burns 

Samara also suffers from Renauld’s syndrome – an equally rare condition that means her body reacts dramatically to the slightest drop in temperature.

She said: “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.

To have anything like a normal life Samara can only be exposed to a temperature of 17 degrees Celsius – anything higher or lower will lead to incredible suffering.

Her father Brian is a former college professor who is also housebound with the same two conditions.

 

He said: “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."

Samara developed the condition aged nine but it took years to get a diagnosis after the family visited more than 100 doctors looking for help.

He said: “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."

Samara developed the condition aged nine but it took years to get a diagnosis after the family visited more than 100 doctors looking for help.

 

Samara 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,” she said groaning. 

 



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Meet The Lady Who Is Burning Alive!
Aysha Usman

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