Rare Disease

  • Posted on September 25, 2014 at 8:26 pm

At this very moment, many Spanish guys and girls feel like freaks in their social environment, as being apathetic and without power, unable not just to keep pace with their peers, but simply of wanting to continue living. a Many of them suffer, even without knowing it, some form of glycogen storage disease, one of those rare diseases of late diagnosis and treatment difficult. Until very recently, when someone stated that kind of apathy vital, was criticized as vague useless person, object of ridicule by his classmates in gym class or the most cruel pranks in the former military or college hazing. Do not tell them some of the testimonies I have heard because surely you know stories even worse. a When the disease ended in tragedy, as happened so many times, official ignorance medical science of the time attributed the death to some of the conditions then known, although symptoms do not match. a Fortunately, scientific research and medical advances are discovering the truth of many hitherto mysterious diseases like glycogen storage disease, a condition with different varieties that have little to do with each other, to unless the enzyme deficiency that prevents glycogen correctly process provides muscular energy required by our body. a Still, despite being able to make a correct diagnosis and the treatment of patients is still far from satisfactory: social information is lacking in this respect, lack of comprehensive care plans these patients and specialized reference units, research is scarce, the service network of the different regions does not work with sufficient coordination and affected families often feel unprotected. .

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