A story of courage and fortitude . BYSTANDER FIDE have porphyria of Gunther.
There are only 200 cases worldwide of this rare disease, and hereditary metabolic
Evil is presented at six months and was to prime. It grows slowly, virulence, and occasionally strikes oil. The pharmaceutical industry does not give answers. But as she seeks them. Heads an association of disabled persons, administrative works in an insurance company and loves the little things exist. Fide called Myron, a complete woman. This life lesson is free.
arrests have plenty of
arrests have plenty of
This story starts with a push. He gave a Hospital doctor October 12: "Go out and being seen, they do not believe you exist."
So here are a Fide with the sole mission of evidence that exists, medicine does not come then saying that Fide is not. So here are a Fide be, do not expect a report from those who do mourn with little music background. He expects you hold your eyes and know, just know. "Sal, do not believe that you exist" ...
So here are a Fide with the sole mission of evidence that exists, medicine does not come then saying that Fide is not. So here are a Fide be, do not expect a report from those who do mourn with little music background. He expects you hold your eyes and know, just know. "Sal, do not believe that you exist" ...
there, go there.
For 34 autumns. In the sepia photo of her album is sit-in a bowl, with just over a year, plump and naked, still intact, looking at the camera and looking forward to some funny and her brother take a bucket of water over it. The color photo above is from this month, at his home in Alicante Ibi. From one image to another is a slow and devastating fire, a rare disease called porphyria erythropoietic Günther, despite its brutality, is not going to steal the smiles to the album.
You have two options.
"Either you stay at home crying or salts. I chose the latter. I do not know if it's the most intelligent, but I feel like it is because life is many things. I have hope for life. Every day is unique, different , unrepeatable ...".
"Well, what do you think then that the story?
"Look, you could say no. Because I'm not going to help anything. I think the solution is not reached me. But I think I have to stand up for people coming back.
"Well, what do you think then that the story?
"Look, you could say no. Because I'm not going to help anything. I think the solution is not reached me. But I think I have to stand up for people coming back.
The report
was six months of life Fide when porphyria was made in the family as those that make air blows the curtains bulge, something that goes invisible. Diapers betrayed breeding red urine, the hands began to blister without further. Were in Almería and it was summer castle in the air and sand. The girl's first vacation. Good morning, porphyria. "After months of testing, when my parents were told she had, they dropped the world over. Then came the silence, not knowing anything, not enough information. And the question:
Now what?
Fide now known as Socrates, who only knows that he knows nothing: a inherited disease with painful erosions, sometimes with anemia and eye injuries with bone and cartilage destruction, especially in the face and hands, mutilating. And hot iron brand you for life.
Fide now known as Socrates, who only knows that he knows nothing: a inherited disease with painful erosions, sometimes with anemia and eye injuries with bone and cartilage destruction, especially in the face and hands, mutilating. And hot iron brand you for life.
Going to school was not easy.
was going to a different pace, I spent quarters without going through the pains, maybe six or eight months was barely able walk, so I left to study at the end of GBS, "evokes this employee insurance." I remember when I was four or five years kept hands and face still perfect. This is very slow. You appear injuries and more injuries. Not out to recess for fall, because you're losing flesh wounds that do not recover. In the world had Chinese, low, black, fat ... But I was so different. "
life consisted of biweekly blood transfusion dad, in a surprise each month in the mirror and a feeling of being alone in a boat, nowhere in the middle of a black ocean with knife jaws. When Fide was nine, his father died in an accident. Fide
then suddenly increased and, today, gives the oars with the mother, both living together at home. See if you see a lighthouse and snuggles up one at Port ... There was a time when there was talk of marrow transplantation as a possible departure, there was another time when I tried to graft ("no doctor wants to touch me for fear my skin heals very bad"); and now overlooking a warm solve by France gene therapy. Latest news: research doctors in Bordeaux Verneuil and Ged have stopped the evil in mice.
"I saw 10 years ago had no answers. The doctors said there was no money for research. So I set myself to search for others sick: I have located two, "he says." I have the feeling of living on borrowed time. Now I'm in a good stage, but I think any time the disease can hit a ball and it has not stopping it. You live with that fear. No one knows how we live, I think I'm the one with more age. "Fide
life consisted of biweekly blood transfusion dad, in a surprise each month in the mirror and a feeling of being alone in a boat, nowhere in the middle of a black ocean with knife jaws. When Fide was nine, his father died in an accident. Fide
then suddenly increased and, today, gives the oars with the mother, both living together at home. See if you see a lighthouse and snuggles up one at Port ... There was a time when there was talk of marrow transplantation as a possible departure, there was another time when I tried to graft ("no doctor wants to touch me for fear my skin heals very bad"); and now overlooking a warm solve by France gene therapy. Latest news: research doctors in Bordeaux Verneuil and Ged have stopped the evil in mice.
"I saw 10 years ago had no answers. The doctors said there was no money for research. So I set myself to search for others sick: I have located two, "he says." I have the feeling of living on borrowed time. Now I'm in a good stage, but I think any time the disease can hit a ball and it has not stopping it. You live with that fear. No one knows how we live, I think I'm the one with more age. "Fide
diligently seeking to explore without finding the gold nugget of science, medical diving, going to conferences, giving lectures, sifting information (www. porphyria-europe.org and www.porfiria.org). He has told the medical students of Seville, "Oh, and this is not contagious, guys. So, if you go out evil here is not my fault. "It happens that screams and screams and will not return or echo.
"To me what interests me is to stop the pain.
- So much pain, Fide?
-To give you an idea as if you were to drop a finger or a piece of expensive based on pure pain. It is unbearable.
- So much pain, Fide?
-To give you an idea as if you were to drop a finger or a piece of expensive based on pure pain. It is unbearable.
We walk through Alicante and the streets are open to the sea touched by the rod of Moses. When everything is normal, she is invisible. He spent a night of drinking that went with his panda life.
A newcomer to a friend questioned a close friend of Fide.
"Hey, psssh," and that girl with him?
- What girl? -Dancing.
-A that "pointing to them.
"Sorry, but what girl you talking about? -Not falling.
"That one right there.
-Ahhhh, what Fide? Nah.
"There are people who changes seats so as not to be by my side. But who has the problem? That person or me?" He who is not sitting. I'm normal, which is rare is my disease " .
"Hey, psssh," and that girl with him?
- What girl? -Dancing.
-A that "pointing to them.
"Sorry, but what girl you talking about? -Not falling.
"That one right there.
-Ahhhh, what Fide? Nah.
"There are people who changes seats so as not to be by my side. But who has the problem? That person or me?" He who is not sitting. I'm normal, which is rare is my disease " .
spent one day in many years in Barcelona. Fide was walking. A group of teenagers saw it happen, were accomplices of the elbow blows, and decided to follow and the entertainment of the day. "Usually I do not care who sees me, but that day I said, 'Well, what you're going to have to currar'. I made halfway around the city behind me, I did get on the subway. At last I turned and I I said 'Wow your stupidity. Girl, you have the head not only to collect the hair in a bun '. "
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