{"id":4186,"date":"2026-05-21T09:35:57","date_gmt":"2026-05-21T07:35:57","guid":{"rendered":"https:\/\/life4hsp.com\/?p=4186"},"modified":"2026-05-21T12:25:21","modified_gmt":"2026-05-21T10:25:21","slug":"eerst-een-andere-diagnose-het-verhaal-van-elizabeth","status":"publish","type":"post","link":"https:\/\/life4hsp.com\/es\/eerst-een-andere-diagnose-het-verhaal-van-elizabeth\/","title":{"rendered":"Primero otro diagn\u00f3stico \u2013 La historia de Elizabeth"},"content":{"rendered":"<h2>Despu\u00e9s result\u00f3 ser HSP<\/h2>\n<p>Elizabeth Witteveen Rhijnsburger (43 a\u00f1os) vive junto a su esposo Jan Peter en Zeewolde. Juntos forman una familia muy unida con su perro Puk y sus gatos Bram y Pien. \u201cPara nosotros realmente son como nuestros hijos\u201d, cuenta Elizabeth.<\/p>\n<p>Drie jaar geleden kreeg Elizabeth de diagnose HSP. Daar ging echter een lange periode van onzekerheid aan vooraf. \u201cIk had al eerder een andere diagnose gekregen, namelijk ALS, maar mijn klachten werden steeds erger. Ik werd stijver, lopen ging moeilijker en ook praten kostte steeds meer moeite. Daarom ben ik voor een second opinion naar het <a href=\"https:\/\/www.umcutrecht.nl\/nl\/revalidatie-bij-spierziekten\">UMC Utrecht<\/a> gegaan.\u201d Bij de afdeling Neuromusculaire Ziekten werd verder onderzoek gedaan. Uiteindelijk kwam daar de diagnose HSP uit.<\/p>\n<p>\u201cPara mi esposo y para m\u00ed fue un periodo muy duro. Te entregas a la experiencia de los m\u00e9dicos mientras al mismo tiempo vives con la incertidumbre sobre cu\u00e1l ser\u00e1 el resultado.\u201d<\/p>\n<h2>Vivir con HSP<\/h2>\n<p data-start=\"940\" data-end=\"1007\">La enfermedad tiene un gran impacto en la vida diaria de Elizabeth. \u201cLa HSP afecta pr\u00e1cticamente todo. Necesito cuidados las 24 horas del d\u00eda. Mi esposo cuida de m\u00ed e incluso tuvo que dejar su trabajo porque estaba cada vez m\u00e1s preocupado y yo ya no puedo quedarme sola.\u201d<\/p>\n<p>\u201cEl mayor desaf\u00edo para m\u00ed es que necesito mucha ayuda y solo me queda aproximadamente un 25 por ciento de energ\u00eda. Eso significa que cada d\u00eda tengo que tomar decisiones. No me resulta f\u00e1cil, porque la energ\u00eda es algo intangible. Solo te das cuenta de lo valiosa que es cuando cada vez tienes menos. Desde el diagn\u00f3stico de HSP muchas cosas han cambiado. Por un lado, no voy a mejorar, pero por otro lado, finalmente todas las piezas del rompecabezas encajaron. Eso me da tranquilidad mental y me ayuda emocionalmente.\u201d<\/p>\n<p data-start=\"1586\" data-end=\"1664\">En su familia existen varias enfermedades musculares, aunque nunca se hab\u00eda diagnosticado HSP. \u201cSe remonta a cinco generaciones, siempre de madre a hija. Lamentablemente mi madre y mi abuela fallecieron, as\u00ed que ya no puedo hablar con ellas sobre esto.\u201d<\/p>\n<h2>Disfrutar de las peque\u00f1as cosas<\/h2>\n<p>Elizabeth habla abiertamente sobre los cambios en su vida. \u201cPoco a poco he encontrado mi equilibrio en la vida diaria, aunque a veces sigue siendo un desaf\u00edo. Tambi\u00e9n porque soy bastante terca. A los 28 a\u00f1os fui declarada completamente incapacitada para trabajar. Eso fue muy dif\u00edcil de aceptar. Sent\u00ed como si de repente me hubieran puesto una etiqueta. Aun as\u00ed, segu\u00ed haciendo trabajo voluntario, pero cuando finalmente tampoco pude continuar con eso, tuve que dejarlo. Con la HSP tienes que seguir adapt\u00e1ndote cada vez que empeoras. No es f\u00e1cil.\u201d<\/p>\n<p>A pesar de todo, Elizabeth intenta conscientemente disfrutar de las peque\u00f1as cosas de la vida. \u201cHoy disfruto de las peque\u00f1as cosas. Me gusta leer libros y revistas de la biblioteca, ver televisi\u00f3n para relajarme y sentarme afuera en mi silla de ruedas cuando hace buen tiempo. Fui criada en la fe y eso me da mucha fuerza. Tambi\u00e9n he aprendido a apreciar los peque\u00f1os momentos, como los \u00e1rboles frutales en flor o los p\u00e1jaros que pasan volando.\u201d<\/p>\n<h2>Mi mensaje para los dem\u00e1s<\/h2>\n<p>Elizabeth considera importante que las personas sepan m\u00e1s sobre la HSP. \u201cLo que los dem\u00e1s deben saber sobre la HSP es que es una enfermedad progresiva. Afortunadamente existen buenas ayudas y posibilidades para aliviar los s\u00edntomas que pueden apoyar la vida diaria.\u201d<\/p>\n<p>\u201cA otras personas con HSP les dir\u00eda: intenten disfrutar de las peque\u00f1as cosas. Miren lo que todav\u00eda pueden hacer y encuentren all\u00ed su felicidad. La vida es demasiado corta.\u201d<\/p>\n<p><strong>Carpe Diem.<\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>Toen bleek het toch HSP te zijn Elizabeth Witteveen Rhijnsburger (43) woont samen met haar man Jan Peter in Zeewolde. Samen vormen ze een warm gezin met hun hond Puk en katten Bram en Pien. \u201cVoor ons voelen ze echt als onze kinderen,\u201d vertelt Elizabeth. Drie jaar geleden kreeg Elizabeth de diagnose HSP. Daar ging [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":4187,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-4186","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Eerst een andere diagnose \u2013 het verhaal van Elizabeth - Life4HSP<\/title>\n<meta name=\"description\" content=\"Drie jaar geleden kreeg Elizabeth de diagnose HSP. 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