This condition is called congenital erythropoietic porphyria Günther, is a very rare disease, with severe mutilating and prognosis. There is very little information about it, but we do know that also there are very few cases of people who suffer around the world.
Although I do not know, in this post I wanted to make a small tribute to a girl named Myron Fide. Fide has this disease and the symptoms began when he was a baby. Now has over 30 years and has been struggling, without much success, all his life for attempting to obtain medical information about what is happening.
I often think how difficult it is to go by placing the stones that form the path of life. Almost never know where to put the next, how to fit it to avoid dislodging the above. This is undoubtedly the most difficult task before us and upon which our happiness. Well, for Fide I think is to remove his hat. She is the kind of person I call "an unsung hero" since not only been responsible for promoting research on this disease, but has had enough moral strength to get out there to give us all an example of what they are will to live: "I went to public schools, I have done my studies, I work and my life completely standard to any other person."
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