Video “I am Burning Alive”: Girl Suffers From Rare Skin Condition

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A housebound woman feels like she is burning alive from the inside because of a rare genetic condition. Samara Rose Ingraffia suffers from erythromelalgia or Man on Fire syndrome, which leaves her feeling like she is experiencing constant second degree burns. Amazingly Samara, who lives in Michigan, also suffers from Renauld’s syndrome – an equally rare condition that means her body reacts terribly to even the slightest drop in temperature. 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.

Videographer / Director: Dustin Bacon
Producer: Dan Howlett, Nick Johnson
Editor: Sonia Estal

If you wish to help Samara Rose, visit her Facebook page for more information on how to donate:
https://www.facebook.com/hopeforburningrose/

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