{"id":278,"date":"2025-02-21T15:54:50","date_gmt":"2025-02-21T14:54:50","guid":{"rendered":"https:\/\/asmemyhre.es\/?page_id=278"},"modified":"2025-10-09T13:19:22","modified_gmt":"2025-10-09T11:19:22","slug":"testimonios","status":"publish","type":"page","link":"https:\/\/asmemyhre.es\/index.php\/testimonios\/","title":{"rendered":"Testimonios"},"content":{"rendered":"\n<h1 class=\"wp-block-heading alignwide\">Testimonios<\/h1>\n\n\n\n<div class=\"wp-block-group alignwide is-nowrap is-layout-flex wp-container-core-group-is-layout-6c531013 wp-block-group-is-layout-flex\"><div\r\n    class=\"align  wp-block-icb-cards\"    id=\"icbCards-1\"\r\n    data-attributes='{&quot;clientId&quot;:&quot;2fda5b98-fa41-4346-91b7-4e365b576607&quot;,&quot;cards&quot;:[{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-02.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Mi hijo se llama Benjam\\u00edn, tiene 12 a\\u00f1os y le diagnosticaron la enfermedad a los 9 a\\u00f1os. No sab\\u00edan lo que le pasaba, le mandaron las hormonas del crecimiento y ha seguido el tratamiento durante 7 a\\u00f1os. Contactamos con Rosa, que ella tiene una hija tambi\\u00e9n con el s\\u00edndrome de Myhre y nos habl\\u00f3 de la asociaci\\u00f3n. Nos ha venido muy bien porque hemos contactado con m\\u00e1s familias afectadas y a la vez con m\\u00e9dicos interesados en este s\\u00edndrome. &lt;br&gt;&lt;em&gt;Leticia, Granada&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;},{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-03.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Soy Roc\\u00edo, mam\\u00e1 de Carla.&lt;br&gt;El diagn\\u00f3stico del s\\u00edndrome de Myhre nos lleg\\u00f3 en Junio de 2024, Carla iba a cumplir 3 a\\u00f1os.&lt;br&gt;En un primer momento fue un impacto brutal, ya que no nos supieron dar ninguna informaci\\u00f3n.&lt;br&gt;As\\u00ed que, sacando fuerzas, buscamos, y encontramos a Rosa y desde ese momento entramos a la gran familia que hab\\u00edan ido formando.&lt;br&gt;Gracias a la red de apoyo familiar, la asociaci\\u00f3n y al cari\\u00f1o de cada uno de ellos, no nos sentimos solos.&lt;br&gt;Deseamos que se de visibilidad y poder llegar a conseguir avanzes en investigaci\\u00f3n.&lt;br&gt;&lt;em&gt;Roc\\u00edo, Guadalajara&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;},{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-07.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Cuando recibimos el diagn\\u00f3stico de nuestra hija en 2018, me sent\\u00ed perdida y sola. Luego contact\\u00e9 con otra madre cuyo hijo hab\\u00eda sido diagnosticado el a\\u00f1o anterior. \\u00c9ramos solo dos madres enfrent\\u00e1ndonos a un mar de dudas, sin respuestas, ni apoyo. Con el tiempo m\\u00e1s familias se fueron uniendo, compartiendo sus historias, sus luchas y sus logros. As\\u00ed naci\\u00f3 esta asociaci\\u00f3n, de la necesidad de apoyarnos mutuamente, de aprender juntas y dar visibilidad al trastorno de nuestros hijos. &lt;br&gt;Aqu\\u00ed nadie est\\u00e1 solo, y eso lo cambia todo. &lt;br&gt;&lt;em&gt;Chelo, A Coru\\u00f1a&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;},{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-01.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Mi nombre es Magdalena. En 2020, a la edad de 19 a\\u00f1os, recib\\u00ed el diagn\\u00f3stico del s\\u00edndrome de Myhre. Las enfermedades ultra raras presentan un gran desaf\\u00edo, especialmente cuando el diagn\\u00f3stico se retrasa. Reducir este tiempo, que en mi caso fue de cinco a\\u00f1os, es crucial para evitar la frustraci\\u00f3n, la irritabilidad, la ansiedad y las dificultades en la toma de decisiones.&lt;br&gt;Recibir un diagn\\u00f3stico genera sentimientos encontrados. Por un lado, puede brindar esperanza, alivio, validaci\\u00f3n y empoderamiento. Por otro, tambi\\u00e9n puede generar ansiedad y depresi\\u00f3n debido a la falta de informaci\\u00f3n, la ausencia de un tratamiento adecuado o la incertidumbre sobre el futuro.&lt;br&gt;Desde hace un a\\u00f1o y dos meses, he trabajado para dar visibilidad al s\\u00edndrome de Myhre y a la asociaci\\u00f3n que lucha por su reconocimiento. He participado en entrevistas en peri\\u00f3dicos, televisi\\u00f3n y radio a nivel mundial, adem\\u00e1s de dialogar con m\\u00e9dicos de Espa\\u00f1a y del extranjero para explicar en qu\\u00e9 consiste esta enfermedad ultra rara.&lt;br&gt;Esta asociaci\\u00f3n es fundamental porque muy pocas personas conocen el s\\u00edndrome de Myhre. Es necesario fomentar la investigaci\\u00f3n, mejorar la detecci\\u00f3n temprana y garantizar un diagn\\u00f3stico preciso. Solo as\\u00ed podremos avanzar hacia un tratamiento adecuado y mejorar la calidad de vida de quienes padecen esta condici\\u00f3n. &lt;br&gt;&lt;em&gt;Magdalena, Pais Vasco.&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;},{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-06.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Mi nombre es Rosa. Soy la madre de R\\u00f3sali. El diagn\\u00f3stico del s\\u00edndrome de Myhre lleg\\u00f3 a nuestras vidas en el 2021, R\\u00f3sali solo ten\\u00eda un a\\u00f1o y medio. Recuerdo que apenas exist\\u00eda informaci\\u00f3n y menos en castellano. Fue como si alguien nos tirara un cubo de agua fr\\u00eda. Ning\\u00fan m\\u00e9dico conoc\\u00eda a otro caso y fuimos a ciegas durante mucho tiempo. Dimos con tres familias m\\u00e1s con el diagn\\u00f3stico y la idea de formar una asociaci\\u00f3n tuvo todo el sentido. Ten\\u00eda la necesidad de visibilizar, de mostrar y de ense\\u00f1ar lo que significa. Tuve la necesidad de que nadie m\\u00e1s pasara por lo que yo pas\\u00e9, que nadie entrara en internet a buscar el s\\u00edndrome y no encontrara informaci\\u00f3n. Hoy somos dieciocho familias de afectados con el s\\u00edndrome de Myhre, tenemos muchos seguidores de instagram y otras redes que conocen el s\\u00edndrome. Nos hemos hecho un hueco en varios hospitales de la pen\\u00ednsula. Tenemos una red de apoyo familiar para no sentirnos solos nunca m\\u00e1s. Podemos decir que somos una gran familia y que poco a poco vamos a conseguir todo lo que nos proponemos.\\u00a0&lt;br&gt;&lt;em&gt;Rosa, Madrid&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;},{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-05.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Adri nos di\\u00f3 un buen susto el d\\u00eda que lleg\\u00f3 al mundo en 2013... desprendimiento de placenta y ces\\u00e1rea de urgencia. Estuvo ingresado en neonatolog\\u00eda mes y medio. Todo parec\\u00eda que iba bien, pero ten\\u00eda revisiones con varios especialistas. El pediatra del HUCA nos mand\\u00f3 a gen\\u00e9tica pues estaba convencido que \\&quot;algo hab\\u00eda\\&quot; por su fenotipo peculiar (labios muy finos, filtrum largo, deditos cortos...).&lt;br&gt;En marzo del 2017 recibimos el diagn\\u00f3stico: una enfermedad ultrarrara que conlleva varias afectaciones: el s\\u00edndrome de Myhre.&lt;br&gt;Ser el primer caso en Espa\\u00f1a significaba que est\\u00e1bamos en un territorio desconocido, sin un mapa claro que seguir.&lt;br&gt;A lo largo de este camino hemos ido poni\\u00e9ndonos en contacto con otras familias afectadas en Espa\\u00f1a, lo que supone un gran apoyo.&lt;br&gt;Quiero compartir este testimonio no solo para dar visibilidad a las enfermedades raras, sino tambi\\u00e9n para ofrecer esperanza a otras familias que puedan estar enfrentando situaciones similares. No est\\u00e1n solos, y aunque el camino puede ser dif\\u00edcil, hay luz al final del t\\u00fanel. &lt;br&gt;&lt;em&gt;Lore, Asturias&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;},{&quot;background&quot;:{&quot;color&quot;:&quot;#fff&quot;},&quot;img&quot;:&quot;https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2025\\\/02\\\/Testimonios-11.png&quot;,&quot;title&quot;:&quot; &quot;,&quot;desc&quot;:&quot;Una fecha que jam\\u00e1s olvidaremos: el 30 de junio de 2023.&lt;br&gt;El diagn\\u00f3stico de Carla lleg\\u00f3 cuando estaba a punto de cumplir 13 a\\u00f1os. Fue un diagn\\u00f3stico tard\\u00edo y devastador, pero nos permiti\\u00f3 comprender finalmente lo que hab\\u00eda estado sucediendo todo ese tiempo.&lt;br&gt;Despu\\u00e9s del impacto inicial y de tomarnos un tiempo para procesar todos los miedos, incertidumbres y preguntas, contactamos con otra mam\\u00e1 a trav\\u00e9s de las redes sociales.&lt;br&gt;Formar parte del grupo de familias y de la asociaci\\u00f3n nos ha dado la oportunidad de conocer a otras familias que viven esta misma realidad y saber que no estamos solos en este proceso. &lt;br&gt;&lt;em&gt;Raquel, Barcelona&lt;\\\/em&gt;&quot;,&quot;btnLabal&quot;:&quot;Button&quot;,&quot;btnUrl&quot;:&quot;#&quot;,&quot;isBtn&quot;:false,&quot;cardUrl&quot;:&quot;&quot;}],&quot;theme&quot;:&quot;theme2&quot;,&quot;imgHeight&quot;:&quot;400px&quot;,&quot;cardPadding&quot;:{&quot;top&quot;:&quot;15px&quot;,&quot;right&quot;:&quot;15px&quot;,&quot;bottom&quot;:&quot;15px&quot;,&quot;left&quot;:&quot;15px&quot;},&quot;contentPadding&quot;:{&quot;top&quot;:&quot;0px&quot;,&quot;right&quot;:&quot;15px&quot;,&quot;bottom&quot;:&quot;0px&quot;,&quot;left&quot;:&quot;15px&quot;},&quot;titleTypo&quot;:{&quot;fontSize&quot;:{&quot;0&quot;:&quot;2&quot;,&quot;1&quot;:&quot;0&quot;,&quot;desktop&quot;:13}},&quot;descTypo&quot;:{&quot;fontSize&quot;:{&quot;0&quot;:&quot;1&quot;,&quot;1&quot;:&quot;6&quot;,&quot;desktop&quot;:14},&quot;fontWeight&quot;:300,&quot;fontVariant&quot;:&quot;300&quot;},&quot;className&quot;:&quot;&quot;,&quot;align&quot;:&quot;&quot;,&quot;layout&quot;:&quot;vertical&quot;,&quot;columns&quot;:{&quot;desktop&quot;:3,&quot;tablet&quot;:2,&quot;mobile&quot;:1},&quot;columnGap&quot;:&quot;20px&quot;,&quot;rowGap&quot;:&quot;20px&quot;,&quot;isImg&quot;:true,&quot;isTab&quot;:false,&quot;imgPos&quot;:&quot;first&quot;,&quot;background&quot;:{&quot;color&quot;:&quot;#0000&quot;},&quot;padding&quot;:{&quot;top&quot;:&quot;0px&quot;,&quot;right&quot;:&quot;0x&quot;,&quot;bottom&quot;:&quot;0px&quot;,&quot;left&quot;:&quot;0px&quot;},&quot;cardRadius&quot;:&quot;8px&quot;,&quot;cardShadow&quot;:[{&quot;hOffset&quot;:&quot;0px&quot;,&quot;vOffset&quot;:&quot;4px&quot;,&quot;blur&quot;:&quot;8px&quot;,&quot;spreed&quot;:&quot;0px&quot;,&quot;color&quot;:&quot;#0003&quot;}],&quot;contentAlign&quot;:&quot;left&quot;,&quot;titleColor&quot;:&quot;#000&quot;,&quot;descColor&quot;:&quot;#000&quot;,&quot;btnTypo&quot;:{&quot;fontSize&quot;:15,&quot;textDecoration&quot;:&quot;none&quot;},&quot;btnAlign&quot;:&quot;left&quot;,&quot;btnColors&quot;:{&quot;color&quot;:&quot;#fff&quot;,&quot;bg&quot;:&quot;#4527a4&quot;},&quot;btnHovColors&quot;:{&quot;color&quot;:&quot;#fff&quot;,&quot;bg&quot;:&quot;#fe6601&quot;},&quot;btnPadding&quot;:{&quot;top&quot;:&quot;10px&quot;,&quot;right&quot;:&quot;15px&quot;,&quot;bottom&quot;:&quot;10px&quot;,&quot;left&quot;:&quot;15px&quot;},&quot;btnRadius&quot;:&quot;8px&quot;,&quot;productsInfo&quot;:[{&quot;title&quot;:&quot;Alienware Gaming Laptop&quot;,&quot;description&quot;:&quot;Alienware Laptop is one of the best Gaming Laptops. 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