'I am burning alive'

Woman Feels Like She's 'Burning Alive' Because Of Rare Skin Condition Erythromelalgia.

A woman has been left housebound due to a rare genetic condition which makes her feel like she's burning alive. Samara Rose Ingraffia, 25, suffers from erythromelalgia or 'Man on Fire syndrome', which leaves her feeling like she is experiencing constant second degree burns. She also suffers from Raynaud's disease, an equally rare health condition that means her body reacts dramatically to the slightest drop in temperature. Samara 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."

Living with a rare disease letter

If you are living with a rare disease, feel free to print this letter and share it as is, or edit it to make it your own and share with those you wish to have improved understanding of your diagnosis.Written by Reta Honey Hiers (2015)

Find The EM Warriors Page On The Mighty.