Samara Rose Ingraffia suffers from erythromelalgia or Man on
Fire syndrome, which leaves her feeling 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.
The 25-year-old 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.
Traditional education soon became impossible for Samara
because of the heat in the classrooms so she had to be homeschooled - leading
her to become very isolated. The family has been desperately trying to find a
cure for Samara and Brian but is not hopeful.
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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