{"id":26166,"date":"2024-03-13T12:24:05","date_gmt":"2024-03-13T16:24:05","guid":{"rendered":"https:\/\/nephcure.org\/?post_type=patient-story&p=26166"},"modified":"2024-04-29T16:17:45","modified_gmt":"2024-04-29T20:17:45","slug":"ethan-c-2","status":"publish","type":"patient-story","link":"https:\/\/nephcure.org\/es\/patient-story\/ethan-c-2\/","title":{"rendered":"Ethan C."},"content":{"rendered":"

A Ethan le diagnosticaron s\u00edndrome nefr\u00f3tico cuando solo ten\u00eda 8 a\u00f1os. Sus padres notaron que hab\u00eda ganado peso pero pensaron que era porque finalmente estaba ganando algunos kilos despu\u00e9s de ser un ni\u00f1o muy delgado. Sin embargo, una noche se quej\u00f3 de dolor al orinar y su zona p\u00e9lvica parec\u00eda hinchada. Los padres de Ethan lo llevaron al m\u00e9dico, esperando una infecci\u00f3n del tracto urinario, pero se sorprendieron al saber que Ethan ten\u00eda niveles muy altos de prote\u00edna en la orina. Luego le diagnosticaron s\u00edndrome nefr\u00f3tico, una afecci\u00f3n de la que nunca hab\u00edan o\u00eddo hablar y no ten\u00eda idea de los desaf\u00edos que le esperaban.

El nivel de alb\u00famina de Ethan era s\u00f3lo de 10 g\/L, por lo que fue hospitalizado para una transfusi\u00f3n. Despu\u00e9s de una semana con dosis altas de prednisolona, su proteinuria y edema comenzaron a mejorar. Sin embargo, continu\u00f3 experimentando reca\u00eddas, en su mayor\u00eda asociadas con enfermedades leves. Cada reca\u00edda parec\u00eda durar m\u00e1s y requerir dosis m\u00e1s altas de esteroides para entrar en remisi\u00f3n, y qued\u00f3 claro que era dependiente de los esteroides. Para evitar medicamentos de segunda l\u00ednea m\u00e1s fuertes, la familia de Ethan intent\u00f3 eliminar de su dieta los principales desencadenantes de alergias, como el gluten, el huevo, los l\u00e1cteos, los c\u00edtricos y, finalmente, se eliminaron todos los cereales. Tambi\u00e9n exploraron terapias a base de hierbas chinas alternativas, incluida la c\u00farcuma en dosis altas, pero desafortunadamente, sigui\u00f3 teniendo reca\u00eddas igual de graves, si no peores.<\/p>\n\n\n\n

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En julio de 2013, Ethan ingres\u00f3 para otra transfusi\u00f3n de alb\u00famina y, para su alivio, una biopsia indic\u00f3 enfermedad de cambios m\u00ednimos. Comenz\u00f3 a tomar ciclosporina, lo que le permiti\u00f3 reducir gradualmente los esteroides y lograr dos a\u00f1os de remisi\u00f3n. Sin embargo, la medicaci\u00f3n dej\u00f3 de funcionarle en septiembre de 2015\u2026<\/p>\n\n\n

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El diagn\u00f3stico de Ethan inspir\u00f3 a su hermana, Ella, a dedicarse a las ciencias, lo que la llev\u00f3 a convertirse en estudiante de medicina y abogar por los pacientes renales cr\u00f3nicos. Desde 2013, los hermanos han participado activamente en la promoci\u00f3n de NephCure Kidney International a trav\u00e9s del canal de YouTube de Ella, Sci Files. <\/h2>\n<\/blockquote>\n\n<\/div>\n\n
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Luego prob\u00f3 MMF durante diez meses y finalmente le recetaron Tacrolimus, que no funcion\u00f3 tan bien como esperaba. En julio de 2017 recibi\u00f3 una infusi\u00f3n de Rituximab que le dio nueve meses de remisi\u00f3n. Desde mayo de 2018, tacrolimus (posterior a Rituximab) ha funcionado mejor para Ethan, lo que ha provocado menos reca\u00eddas y menos graves. Incluso logr\u00f3 evitar reca\u00eddas durante las protecciones contra el COVID-19, d\u00e1ndole un respiro de la prednisona. Ethan ha tenido 35 reca\u00eddas hasta ahora.

El diagn\u00f3stico de Ethan inspir\u00f3 a su hermana, Ella, a dedicarse a las ciencias, lo que la llev\u00f3 a convertirse en estudiante de medicina y abogar por los pacientes renales cr\u00f3nicos. Desde 2013, los hermanos han participado activamente en la promoci\u00f3n de NephCure Kidney International a trav\u00e9s del canal de YouTube de Ella, Sci Files. Ethan desarroll\u00f3 un inter\u00e9s temprano en la programaci\u00f3n de computadoras, ya que pas\u00f3 gran parte del tiempo de su tratamiento jugando videojuegos y aprendiendo a codificar. En la escuela secundaria, la experiencia de Ethan con el s\u00edndrome nefr\u00f3tico lo inspir\u00f3 a desarrollar un dispositivo de detecci\u00f3n de alb\u00famina en orina que present\u00f3 en varias ferias cient\u00edficas. Obtuvo reconocimiento nacional en la Feria de Ciencias de Canad\u00e1 y fue finalista del Desaf\u00edo Internacional BioGENEius en Filadelfia.

Ethan est\u00e1 ahora en su primer a\u00f1o de Ingenier\u00eda en la Universidad de Columbia Brit\u00e1nica. Siente que su enfermedad es m\u00e1s estable que nunca y es optimista sobre el futuro.<\/p>","protected":false},"excerpt":{"rendered":"

A Ethan le diagnosticaron s\u00edndrome nefr\u00f3tico cuando solo ten\u00eda 8 a\u00f1os. Sus padres notaron que hab\u00eda aumentado de peso\u2026<\/p>","protected":false},"featured_media":26167,"template":"","age-group":[279],"disease-category":[251],"class_list":["post-26166","patient-story","type-patient-story","status-publish","has-post-thumbnail","hentry","age-group-children","disease-category-minimal-change-disease-mcd"],"acf":[],"yoast_head":"\nEthan C. - NephCure<\/title>\n<meta name=\"description\" content=\"Ethan was diagnosed with Nephrotic Syndrome when he was only 8 years old. 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