Hoy, 28 de febrero, se celebra el Día Mundial de las Enfermedades Raras, un día para visibilizar este tipo de patologías, pedir, apoyar y respaldar a aquellas patologías poco comunicar pero que necesitan una mayor investigación. Y es que según FEDER (Federación de Enfermedades Raras), entre el 6 y el 8% de la población mundial está afectada por alguna de estas patologías; es decir más de 3 millones de españoles.
Yo hoy quiero acercarte la historia de Gonzalo. Gonzalo sufre el síndrome de Perthes, una patología que afecta al desarrollo de la articulación de la cadera en los niños y que consiste en una necrosis -muerte del hueso- de la cabeza femoral debido a una disminución del aporte sanguíneo a la misma. Gonzalo poco antes de cumplir tres añitos volvió de la guardería con una ligera cojera y lo que en un primer momento parecía una sinovitis -inflamación o irritación de la membrana sinovial que reviste las articulaciones- desencadenó en un síndrome de Perthes.
Traumatólogo: ¿Trabajas?
Madre: Sí, ¿por?
Traumatólogo: Este niño va a necesitar reposo prácticamente absoluto los próximos dos o tres años. No podrá moverse. Tendremos que ponerle unos hierros que le inmovilicen las piernas desde el pecho hasta los tobillos, pero no te preocupes que en cuatro o cinco años estará más recuperado
Asfape
Pienso en ese momento, en el que la mamá de Gonzalo recibe esta noticia y… se me saltan las lágrimas. ¡Qué minutos más duros! Pasaron los días para esta familia y llegó la consulta con el doctor de la clínica Ruber Internacional.
Se abrió la puerta y encontré a un hombre que transmitía serenidad, nos miró, miró a Gonzalo, nos miró de nuevo y dijo: ¿Pero este niño enorme qué hace en esta silla? En mi cabeza sonó más parecido a “Lázaro, levántate y anda” pero ahora sí que no entendía nada. El doctor sacó un enorme dinosaurio de goma del cajón de su escritorio y se ganó a mi hijo. Ese día, sorprendentemente, estaba más tranquilo que nunca en una consulta de un médico. Él jugaba entretenido mientras yo le daba al Dr. Abril la radiografía y le contaba lo que nos había dicho el primer médico.
¿A qué afecta el síndrome de Perthes?
El doctor les explicó que el Perthes es un síndrome que afecta a la basculación de la sangre, concretamente a la cabeza del fémur, la sangre no llega bien y el hueso se necrosa. La enfermedad es larga, pesada pero tiene cura y el pronóstico de Gonzalo era muy bueno por su edad y estado.
Gonzalo debía dejar de correr, de saltar y de realizar cualquier movimiento que genera impacto. La buena regeneración de la cabeza del fémur depende de esto, debe crecer redondeada y de un tamaño acorde a su acetábulo -cavidad del hueso coxal en la que se articula la cabeza del fémur-. Esto, lamentablemente, es incompatible con el 99% de las actividades que realiza un niño de su edad.
Convivir con una enfermedad como esta es complicado. Toda la familia debe adaptarse, interiorizar las nuevas limitaciones… Hay que eliminar muchas cosas que forman parte de la vida cotidiana de cualquiera de nosotros, como un balón o una bici.
A día de hoy se sabe muy poco sobre el síndrome de Perthes, y sobre otras muchas patologías. Por ello tenemos que visibilizarlas, es importante que se invierta en investigación, tenemos que hablar de ellas sin vergüenza, sin miedo. Así que desde aquí, desde este pequeño espacio, te invito a compartir en tus redes sociales una foto sentado como el muchacho de la imagen con los siguientes hashtag #perthes, #hoynopuedescorrermañanpodrasvolar #undiamenos #kidspreading #masinvestigacion #diadelasenfermedadesraras y etiquetando a @asfape para que más gente conozca un poco más sobre esta patología.
Por cierto, ¿conocías este síndrome? ¿Tienes cerca a alguna persona que sufra una enfermedad rara? Cuéntame.
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