{"id":3643,"date":"2020-09-15T17:53:22","date_gmt":"2020-09-15T22:53:22","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3643"},"modified":"2024-02-09T14:24:30","modified_gmt":"2024-02-09T14:24:30","slug":"kaya","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/es\/individuals-with-lgmd-interviews\/2020\/09\/15\/kaya\/","title":{"rendered":"INDIVIDUO CON LGMD: Kaya"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"ENTREVISTA EN PRIMER PLANO\" <\/strong><\/p>\n\n\n\n

Nombre<\/strong>: Kaya                           Edad<\/strong>: 18 a\u00f1os<\/p>\n\n\n\n

Pa\u00eds<\/strong>: Holanda<\/p>\n\n\n\n

Subtipo LGMD<\/strong>: LGMD 2D\/ R3 Alpha Sarcoglycan-related<\/p>\n\n\n\n

\u00bfA qu\u00e9 edad le diagnosticaron<\/strong>: <\/p>\n\n\n\n

Creo que debi\u00f3 de ser alrededor de mi tercer cumplea\u00f1os, aunque no puedo decir que recuerde mucho de aquello. El diagn\u00f3stico fue muy precoz.<\/p>\n\n\n\n

\u00bfCu\u00e1les fueron sus primeros s\u00edntomas?<\/strong>:<\/p>\n\n\n\n

Nac\u00ed casi al mismo tiempo que mi hermana y mi primer s\u00edntoma se manifest\u00f3 cuando empec\u00e9 a gatear. Mi hermana, que est\u00e1 sana, gateaba como lo har\u00eda un beb\u00e9 normal, mientras que yo gateaba de forma extra\u00f1a, con una pierna delante de la otra, b\u00e1sicamente arrastr\u00e1ndome. Un acupuntor y gran amigo de la familia se dio cuenta y avis\u00f3 a mi madre, de ah\u00ed mi diagn\u00f3stico precoz. Otro s\u00edntoma que se desarroll\u00f3 un poco m\u00e1s tarde fue que me ca\u00eda. Esto se manifest\u00f3 cuando empec\u00e9 a ir al colegio e intentaba seguir el ritmo de mis compa\u00f1eros. Tras recibir terapia g\u00e9nica a trav\u00e9s de un ensayo cl\u00ednico, este \u00faltimo s\u00edntoma ha disminuido enormemente hasta el punto de que no me he ca\u00eddo en unos dos a\u00f1os, lo que supongo que es un resultado que la mayor\u00eda de las personas sanas no pueden igualar.<\/p>\n\n\n\n

\u00bfTiene otros familiares que padezcan LGMD?<\/strong><\/p>\n\n\n\n

No, soy el \u00fanico de mi familia.<\/p>\n\n\n\n

\u00bfCu\u00e1les crees que son los mayores retos de vivir con LGMD?<\/strong>:<\/p>\n\n\n\n

Para m\u00ed, vivir con LGMD significa seguir luchando. Hago ejercicio todos los d\u00edas. S\u00f3lo lo b\u00e1sico, como dos veces cinco minutos de crosstraining, dos veces un minuto de planking, etc\u00e9tera. Y algunos d\u00edas es dif\u00edcil mantener una mente positiva y encontrar la motivaci\u00f3n para trabajar tan duro como lo he estado haciendo. Cada persona tiene una forma diferente de luchar contra la LGMD; la m\u00eda es bastante literal y directa, y hasta ahora me ha dado buenos resultados. Pero una actitud como esta tiene un precio, ya que no la comparto con la gente de mi edad, lo que me impide establecer ning\u00fan tipo de relaci\u00f3n con ellos y me a\u00edsla socialmente incluso antes de que me encierren por el coronavirus.<\/p>\n\n\n\n

\u00bfCu\u00e1l es su mayor logro?<\/strong>:<\/p>\n\n\n\n

Sigo aqu\u00ed y cada vez m\u00e1s fuerte. Como ya he dicho, he recibido terapia g\u00e9nica en un ensayo cl\u00ednico. Despu\u00e9s de este tratamiento me puse a trabajar para conseguir que mi cuerpo est\u00e9 donde quiero que est\u00e9. He trabajado muy duro antes del ensayo para minimizar cualquier da\u00f1o, lo cual es bastante duro para un chico joven que siempre tiene que ser responsable y tomar muchos suplementos que no siempre son conocidos por ser agradables al paladar, entonces despu\u00e9s de recibir el ensayo fui a hacer deporte y me sent\u00ed cada vez m\u00e1s fuerte y en una mejor condici\u00f3n general. Decir que he vencido a la LGMD es prematuro y, por lo tanto, una tonter\u00eda, pero estar\u00eda m\u00e1s que feliz de decir que actualmente le estoy haciendo el saludo de un dedo.<\/p>\n\n\n\n

\u00bfC\u00f3mo le ha influido la LGMD para convertirse en la persona que es hoy?<\/strong><\/p>\n\n\n\n


De joven, la LGMD me ha obligado a ser muy responsable, ya que con cada movimiento en falso pod\u00eda caerme y romperme algo. Tambi\u00e9n me ha obligado a darlo todo y a hacerlo lo mejor posible y a luchar contra lo invencible. Tambi\u00e9n me ha hecho apreciar la vida y todos los buenos momentos vividos. Ha influido en mis valores y mis prioridades. Todas estas influencias se manifiestan en todo lo que me define, desde la m\u00fasica que escucho y hago y mi \u00e9tica de trabajo en la escuela hasta el tipo de gente con la que me gusta estar.<\/p>\n\n\n\n

\u00bfQu\u00e9 quiere que el mundo sepa sobre la LGMD?<\/strong>:<\/p>\n\n\n\n

Quiero que el mundo sepa que hay gente trabajando sin descanso para ayudarnos. He visto los enormes laboratorios e instalaciones que se ponen en marcha para conseguir esa cura definitiva y he experimentado de primera mano que est\u00e1n trabajando en cosas muy buenas. Me gustar\u00eda aliviar su desesperaci\u00f3n y decirle que se est\u00e1 avanzando en este campo a un ritmo incre\u00edble. Y le garantizo que alg\u00fan d\u00eda recibir\u00e1 una llamada telef\u00f3nica diciendo: \"Hola, creo que tengo algo para usted\".<\/p>\n\n\n\n

Si su LGMD pudiera \"curarse\" ma\u00f1ana, \u00bfqu\u00e9 ser\u00eda lo primero que desear\u00eda hacer?<\/strong>:<\/p>\n\n\n\n

Una gran felicitaci\u00f3n a todos los ex-LGMD-ers y sorprendentes investigadores estar\u00eda en orden creo.<\/p>\n\n\n\n

Para leer m\u00e1s \"LGMD Spotlight Interviews\" o presentarse voluntario para una pr\u00f3xima entrevista, visite nuestro sitio web: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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