Publication: Modelo organizativo y comunicacional de una ONL: estudio de caso sobre la Fundación Síndrome de West
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2016-06-16
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Universidad Complutense de Madrid
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Abstract
Si para la sociedad en general la información sobre la salud es algo importante, para una pequeña parte de ella se convierte en algo imprescindible. Se trata de aquélla aquejada de una patología rara o poco frecuente que no sólo sufre la falta de información sobre su dolencia sino que, incluso, se ve lastrada a veces por la falta de conocimiento de los profesionales sanitarios a la hora de su tratamiento. El mundo de las Enfermedades Raras es complejo porque abarca un número muy grande de sintomatologías y no están suficientemente estudiadas ni atendidas, en su inmensa mayoría. Por si fuera poco, si partimos del hecho de que cualquier dolencia de este tipo (cuya incidencia sea, como mínimo, de un afectado cada 2.000 habitantes) tiene poca visibilidad en el tejido social, la situación se agrava en el momento en que planteamos el análisis de una que sufren los bebés. El Síndrome de West es una patología que corresponde a la Neuropediatría, una de las veintidós especialidades pediátricas no reconocidas oficialmente en nuestro país (cifra resultante tras la reciente incorporación de la neonatología como área de capacitación específica), se convierte, si cabe, en un caso extremo de falta de atención y conocimiento por el gran público. El Síndrome de West, pese a ser la más común de las epilepsias infantiles, sigue siendo un gran desconocido para el gran público. Hasta la última década, el espacio dedicado en los medios generalistas a esta enfermedad había venido siendo casi inexistente. Aparte del aspecto puramente médico y terapéutico, existe otro problema con el que se enfrentan los afectados y sus familias: el de la exclusión social y las trabas de todo tipo que se encuentran en el día a día a causa de sus limitaciones. La mayoría de los afectados sufren epilepsia y autismo y tienen un promedio de discapacidad de 70 %. Precisamente, para paliar esa situación, en 2004 se creó la Fundación Síndrome de West que tiene entre sus pilares básicos la divulgación de la enfermedad, el fomento de la investigación y la atención a las familias afectadas. Se entra también de esta manera en el complejo ámbito de las entidades solidarias y benéficas (ONL), agrupadas en una amalgama de siglas que la mayoría de las veces confunde más que ayuda, y que también tiene una clara influencia en la solución de los problemas planteados...
Health information is very important for society in general, but it is particularly crucial for a subgroup of members of society, who are the individuals affected by rare diseases. They not only suffer the lack of information about the disease, but also frequently the lack of knowledge from healthcare professionals about the illness itself and its treatment. Rare Diseases are defined as those having a prevalence of 1/2000 (or less), live newborns. They are very heterogeneous and present great variability of symptoms and signs depending on the cause. In many cases they are not well studied and, because they are infrequent, they usually have little visibility and recognition in society. The consequences of this situation affect not only the patients themselves, but also the families taking care of them. West Syndrome is a Pediatric Neurological disease. Pediatric neurology is one of 22 pediatric specialties not officially approved in Spain. Only recently, Neonatalogy has been recognized as a pediatric subspecialty. The lack of specific awareness of pediatric disciplines has an important negative repercussion in the understanding that people and pediatric specialists have about continuous advances in pediatric disease in general and in children rare diseases in particular. For example, despite West syndrome being the most frequent of infants and young children epilepsies, it rarely has been the target of media (newspapers and TV), to educate society. Families of children with West syndrome suffer, on a daily basis, horrible consequences: 1) they have to take care of their children’s medical problems, 2) they suffer social exclusion and 3) they have to deal with the difficulties to manage their children’s disabilities. Patients with West syndrome typically suffer epilepsy, but a high percentage develops autism and 70 % have developmental or cognitive disability...
Health information is very important for society in general, but it is particularly crucial for a subgroup of members of society, who are the individuals affected by rare diseases. They not only suffer the lack of information about the disease, but also frequently the lack of knowledge from healthcare professionals about the illness itself and its treatment. Rare Diseases are defined as those having a prevalence of 1/2000 (or less), live newborns. They are very heterogeneous and present great variability of symptoms and signs depending on the cause. In many cases they are not well studied and, because they are infrequent, they usually have little visibility and recognition in society. The consequences of this situation affect not only the patients themselves, but also the families taking care of them. West Syndrome is a Pediatric Neurological disease. Pediatric neurology is one of 22 pediatric specialties not officially approved in Spain. Only recently, Neonatalogy has been recognized as a pediatric subspecialty. The lack of specific awareness of pediatric disciplines has an important negative repercussion in the understanding that people and pediatric specialists have about continuous advances in pediatric disease in general and in children rare diseases in particular. For example, despite West syndrome being the most frequent of infants and young children epilepsies, it rarely has been the target of media (newspapers and TV), to educate society. Families of children with West syndrome suffer, on a daily basis, horrible consequences: 1) they have to take care of their children’s medical problems, 2) they suffer social exclusion and 3) they have to deal with the difficulties to manage their children’s disabilities. Patients with West syndrome typically suffer epilepsy, but a high percentage develops autism and 70 % have developmental or cognitive disability...
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Tesis inédita de la Universidad Complutense de Madrid, Facultad de Ciencias de la Información, Departamento de Derecho Constitucional, leída el 26-01-2016