Ángel Manuel García y Yôsef Karl son moderadores del grupo de Facebook “Síndrome de apnea obstructiva del sueño (SAOS)”, un muro creciente de hombres y mujeres en busca de orientación entre pares cuando son diagnosticados con la enfermedad. Con cerca de 2500 miembros, es la comunidad en español de este tipo más grande de la red, con interesados que consultan, comentan y se entregan feedback desde todo el mundo: España, Argentina, Centroamérica, Chile o la comunidad latina en Europa o EEUU, por mencionar algunos.
“Al ser un tema global, entran al Facebook personas de todas partes del mundo, de edades que, he notado entre los 18 y 70 años durante todo el día si consideras que las publicaciones las hacen en distintos husos horarios al ser una herramienta social de tal acceso”, explica Ángel Manuel García desde La Rioja, España, donde ejerce como hombre de radio y especialista en administración logística.
Algo de ese talento en la gestión del almacenaje y las comunicaciones le permiten perfilar el estado de personas que viven con apnea del sueño desde su experiencia personal y la empatía. Explica que el grupo data desde octubre de 2014, con Yôsef Karl como fundador. Ambos pasaron por ese momento posterior al diagnóstico en el que, salvo la voz del médico, el paciente queda paralizado por la incertidumbre. Esta página de Facebook hace las veces de grupo de apoyo para quienes aterrizan en ella viviendo el mismo miedo, desinformación y abatimiento que sintió Ángel al ser diagnosticado con apnea del sueño severa. “Es algo que te sume en el borde de la depresión y todo lo que comienzas a escuchar suena muy nuevo y desconocido”, recuerda. “Hoy, para mí la apnea del sueño no es una enfermedad. Una enfermedad es el cáncer, me digo. Con el tiempo, lo veo simplemente como una dolencia a la cual, dependiendo de tu tipo y nivel de gravedad, puede ser solucionada con las distintas terapias”, reflexiona el admin.
De vuelta a la vida perdida
Cuenta que convivir con esta condición y con historias permanentes de personas con la misma apnea alrededor del mundo le ha otorgado un extraño grado de empatía como moderador del sitio que lo une a desconocidos que se notan, muchas veces, desesperados. “Muchos como yo en el grupo deben pensar “si yo ya pasé por esto, ¿Por qué no comparto con la gente mi experiencia de cómo lo voy llevando?, qué debo hacer, qué consejos puedo dar, cómo puedo aportar a la calma sobre todo, con paciencia y mucha serenidad”, señala.
Como en toda comunidad, advierte sobre la política contra el troll de internet: “También, como grupo, tenemos la cruz de estas personas que entran interesadas para hacer negocio o lucro o ese miembro que egoístamente cree que su tratamiento es igual para cualquiera e intenta dictar cátedra con sus comentarios y lo único que hace es despistar y desanimar a los nuevos. A veces los administradores tenemos que hacer una labor de vigilancia para evitar esta clase de publicaciones y mantener un equilibrio y respeto entre todo el grupo. La regla principal del grupo es que este de ninguna manera sustituye la consulta con un médico especialista”, reconoce.
A lo largo de este camino del paciente de apnea, dice haber conocido también a ancianos, adultos y niños de meses con mascarillas buco-nasales que parecen de juguete. A mujeres en busca de orientación para apoyar a sus parejas e hijos y los pacientes que aseguran no poder adaptarse al uso del CPAP. Ante este asunto recurrente, Ángel contesta que usar un CPAP no interfiere para nada con el estilo de vida de alguien. “El impacto de usar una mascarilla conectada a una maquinita silenciosa sólo impacta en el estilo de vida que se ha perdido hasta el momento en que se ha sido diagnosticado, es decir, ese pulso de vida o energía vital que puedes volver a recuperar si pones de tu parte en el tratamiento”, aconseja.
Mira, es muy sencillo de entender: ¿prefieres vivir somnoliento, con dolores, con la eventualidad probable de un accidente vascular, con posibilidad de agravar tu salud gravemente o vas a hacer todo lo posible por adaptarte a un tratamiento que puede devolverte la vida perdida?. Si le haces esta pregunta a una persona que necesita dializarse a diario, estoy seguro de que daría años de vida por tener solamente apnea.
Otro aspecto que le llama la atención al administrador del Facebook es la diferencia en el acceso a alternativas y tratamientos para la apnea del sueño. “Ha sido algo dramático leer en el grupo sobre miembros recién diagnosticados a quienes, en sus respectivos países, no les alcanza el dinero para comprar o alquilar una máquina. La culpa no es suya, es un problema institucional el de países que, desgraciadamente no cuentan con sistemas sanitarios solidarios e intergeneracional como el que tenemos en España.
No te digo con esto que la máquina que te facilitan es gratis, los usuarios la pagamos con nuestro trabajo pues el sistema de salud se sostiene por la recaudación de impuestos y la cotización en nuestros salarios al sistema de nacional de salud. Eso permite tener un sistema que financia el acceso al CPAP y a las consultas de un médico público. De verdad me parece muy triste leer sobre gente que está condenada a sufrir la apnea de manera irremediable. En estos casos solo resta animarlos a que duerman de lado, cuiden su dieta y hagan lo posible por sanear su sueño en cuanto a horarios y ejercicio”, plantea.
¿Y tu consejo para quienes aseguran no poder tolerar un CPAP y simplemente se niegan a usarlo?
-No, no creo que existan personas que se nieguen a usarlo. Eso es algo que puedo negar categóricamente. Lo que sí hay es gente que no se adapta tan fácilmente a su uso y necesita más conocimiento, más tiempo o probar con una mascarilla que le acomode para poder adaptarse al tratamiento. Solo el desconocimiento del funcionamiento de un CPAP o BIPAP, la impaciencia o la propia depresión que te afecta al ser diagnosticado pueden ser los motivos que te empujen a negarte al uso de la máquina. Mira, es muy sencillo de entender: ¿prefieres vivir somnoliento, con dolores, con la eventualidad probable de un accidente vascular, con posibilidad de agravar tu salud gravemente o vas a hacer todo lo posible por adaptarte a un tratamiento que puede devolverte la vida perdida?. Si le haces esta pregunta a una persona que necesita dializarse a diario, estoy seguro de que daría años de vida por tener solamente apnea. Esta lucha nunca está perdida, y si crees que lo está, ahí estaremos los miembros del grupo animando para que la gente entienda que la máquina “da vida”.
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