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SHA, la enfermedad a veces llega sin previo aviso

hiperlaxia

Todo iba bien, bueno aparentemente bien, y como en estos casos suele pasar, no lo valoras hasta que las cosas se tuercen…. y se vuelven “porculeras”; tan “porculeras” que te recuerdan casi a diario que hay algo que no va bien, que falla y fallará …. SHA, la enfermedad a veces llega sin previo aviso. Si chic@s, la enfermedad ha aparecido así como un jarro de agua fría en nuestras vidas, en nuestro dia a dia y parece que es para quedarse; así que más vale aceptarla y afrontarla con fuerzas y valentía suficiente.

Hoy mi post no va a ser ni ácido, ni irónico, ni divertido, va a ser diferente a lo que os tengo acostumbradas, pero quiero compartir con vosotras algo personal, que lo podríamos llamar a partir de la fecha Diario de una enfermedad.

Lesiones “normales” que escondían una enfermedad

En el mes de junio y tras las tropecientas lesiones en el pie y en el brazo que sufrió mi mayor, finalmente le fue diagnosticado el Síndrome de Hipelaxitud Articular (SHA). Para que entendáis un poco os explicaré que es una enfermedad hereditaria, de las calificadas como “raras” y que la causa más probable es una mutación genética que provoca que las fibras de colágeno repercutan en la elasticidad y fragilidad de ligamentos, tendones, vasos sanguíneos, piel, etc. Al aumentar la elasticidad de las mismas, la posibilidad de sufrir lesiones es mayor.

SHA o síndrome de hiperlaxia articular

Mi hija padece el SHA y eso quiere decir que los síntomas que padece y que muy posiblemente padecerá son muy diversos y se localizan tanto en el aparato locomotor (dolor articular, esguinces, luxaciones y subluxaciones frecuentes, dolor de espalda, lesiones de tejidos blandos como bursitis, epicondilitis, etc.) como fuera de éste (prolapso de la válvula mitral, venas varicosas, piel frágil y delgada, prolapso uterino y/o rectal, etc) aunque el dolor articular y/o muscular suele ser el síntoma más relevante.

Aproximadamente un 10% de la población tiene hiperlaxitud articular y mayormente son mujeres; sin embargo, el Síndrome de Hiperlaxitud (hiperlaxitud+síntomas) afecta solamente a una minoría de las personas con hiperlaxitud articular.

Una Enfermedad invisible

Es “una enfermedad invisible”, es decir, las personas afectadas tienen una apariencia “normal” y debido a esto puede parecer que están perfectamente bien, pero a menudo, el dolor severo y la limitación funcional les acompañan día a día. Debido a que los tejidos conectivos son muy frágiles, la probabilidad de padecer cualquier tipo de lesión (luxaciones, fracturas, esguinces, tendinitis…) aumenta, incluso cuando realizamos las actividades más suaves de la vida diaria. Con el paso del tiempo a lo largo del día las personas afectadas deben hacer períodos de reposo incluso después de lo que una persona sin esta enfermedad consideraría un rato muy modesto de actividad física.

Actividades cotidianas como bañarse, subir y bajar escaleras, escribir, utilizar el ordenador, la preparación de las comidas, especialmente cortar vegetales, abrir tarros, manejar sartenes… pueden resultar hasta difíciles con el paso del tiempo…….

También resulta curioso que al parecer y con el paso de los años la hiperlaxitud disminuye, pero sus síntomas en cambio se agravan…. que contradicción y que putada!!!!

Dolor, lesiones y mucho más

Hace unas semanas ya vivimos una situación que de lo más cotidiana como es coger un lápiz y estirar el brazo para hacerlo pasó a ser algo kafkiana y acabamos con el bíceps roto…… Y tras una semana con un yeso calificado por ella como pesado, contractura del tríceps con el consecuente dolor…..

Seguiremos sin hacer nada de deporte en el colegio (por mucho que le joda al profesor de turno que creo que no hablamos el mismo idioma), llevamos así desde mayo; como mucho le deja ir a nadar de forma suave.

Ella salió feliz de la consulta, le habían sacado su yeso pesado…. pero también hemos salido con una petición de analítica, ahora para descartar algún tema de reumatismo… y yo de nuevo con ese nudo en el estómago otra vez.

Desde luego que poco valoramos cuando todo va bien. Se que he de ser fuerte mentalmente para ayudarla; al fin y al cabo ella es la que lo pasa mal y conforme pasan los meses, los años y va teniendo lesiones creo que va siendo más consciente de que algo pasa y no es normal.

Esta vez ya a mi se me ha roto el alma, me invaden preguntas del tipo ¿y porque no me ha pasado a mi? ella es una niña, una buena niña, no hay derecho que pase esto con los niños.

Una niña de cristal

Quiero aferrarme a lo que sea y pensar que esto ha de tener un buen fin, o que quizás a mi niña, a mi vida, no le pasará nada de lo que parece ser es el transcurso de la enfermedad…. pero como bien dijo papadedos un día…. es una niña de cristal… y de momento es lo que hay.

No quiero que nadie la mire con pena y con lástima; ni siquiera de forma diferente, aunque esto es difícil de conseguir por parte de los niños de su edad, que más tarde o más temprano entenderán que a mi hija le pasa algo y que aunque aparentemente es igual que ellos, en el fondo es diferente

Os dejo, voy a suspirar…. y a digerir que la enfermedad a veces llega sin previo aviso… hay que joderse.

Mamadedos

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384 Comentarios

  • Responder
    Quierovivirte
    28 febrero, 2014 at 10:17 pm

    Sólo puedo desear que tengas razón y esa niña preciosa que tienes por hija no tenga que sufrir ningún síntoma de esa enfermedad que le impida llevar vida normal.
    Tiene suerte de haber "caído" en esta familia. Vuestros cuidados y amor harán que todo parezca menos difícil.
    Ya sabes que aquí estoy

  • Responder
    Lauraenparis
    28 febrero, 2014 at 10:34 pm

    Bea, la verdad no se que decirte. Lo que cuentas es el miedo de todo padre o madre, que te toque la china ¿porque a mi ? Y aun peor ¿Por qué a mi hija? No tengo respuesta. Esta semana la he pasado con mi hermana de médicos, mi sobrina nació muy prematura, tanto que los médicos esperan lesiones y secuelas que nos saben nombrar ni evaluar. Yo a mi sobrina la veo bien pero soy consciente de que tenemos unas probabilidades altas de que haya "algo". Compartir esta situación con mi hermana me ha dado vértigo, pena y rabia, mucha.
    Pero tenemos que seguir adelante. Tu eres su mamá, su pilar, ella se apoya y se alimenta de tu fuerza. Por lo que sé es una niña buena, inteligente y responsable. Esta colmada de dones y os tiene a vosotros. Podéis, claro que podéis !! Un abrazo

  • Responder
    La sonrisa de Miniyo
    28 febrero, 2014 at 10:38 pm

    Ánimo Bea, tu eres su apoyo, tu fuerza y tus ganas se las transmites a ella. Tu hija luchara contra el dolor y la enfermedad porque tu le has inculcado que es lo que debe hacer. Hay que mirar siempre hacia delante pensando que lo mejor esta por venir. Quien mira a los demás con lástima o pena es porque no ven bien, les gustaria que todos vivieramos igual a lo wue ellos condideran vivir birn y felices pero la vida se disfruta y se vive feliz desde muy diferentes perspectivas porque cada persona la vive distinta, a su manera.
    Sabes que cuentas con todo mi apoyo y se necesitas hablar ya sabes…

  • Responder
    pipopipeypapas
    28 febrero, 2014 at 10:54 pm

    Tienes todo el derecho del mundo, a que se te rompa el alma, a venirte abajo minutos y a cabrearte. Pero también tienes la obligación de venirte arriba, de masticarlo y asumirlo. Ojo que sé que nobes fácil, yo me quise morir cuando me enteré de lo que tenía mi mayor, y todavía hoy me cuesta a veces. Pero ella se va a mirar en ti, va a buscar seguridad en ti. Que duro es, y que poco se valora la salud y que poco conscientes somos de lo importantisimo que es. Pero ya verás como va todo mejor, al final, son ellos los que nos dan las mayores lecciones de valentía y coraje.

    Un abrazo que te cobije el alma, en este día tan gris. Ya sabes donde estoy.

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    terenya
    28 febrero, 2014 at 11:07 pm

    No sé que decirte, me he quedado muda y con un nudo en la garganta. La genética es algo que se me escapa de las manos… unos sí, otros, no… y en el fondo, no somos nada… somos pequeños y vulnerables. ¿por qué ella y no yo?… eso también me lo dijo una compañera a la que a su hijo le encontraron una mancha muy fea en el ojo… también genético…y allí están luchando y a la vez riendo mucho y siendo lo más feliz posible juntos.
    No sé qué puedo hacer… poner mi hombro cerquita tuyo para que te apoyes y desahogues… estar aquí y escucharte…
    No sé que decirte… pero seguro que tu mayor es mucho más fuerte que tu, seguro que te ayuda ella a ti, más que tu a ella… los peques sacan las fuerzas, los ánimos de las piedras… lo ven todo desde otro lado….
    Aquí estaré para lo que pueda. Ya verás como todo va saliendo.
    Venga, va, un abrazo virtual para empezar!

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    1 marzo, 2014 at 6:54 am

    Mucho ánimo. No se qué decirte salvo que aquí en el 2.0 te puedes desahogar con nosotras siempre q lo necesites. Mucho ánimo!!!

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    Oh! Me dejas sin palabras! Sólo puedo decirte que muchos besos, muchos abrazos y muchos mimos! Juntos será más fácil seguir pa'lante y luchar!
    Ánimo, y besos

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