{"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\/it\/eerst-een-andere-diagnose-het-verhaal-van-elizabeth\/","title":{"rendered":"Prima un\u2019altra diagnosi \u2013 La storia di Elizabeth"},"content":{"rendered":"<h2>Poi si \u00e8 scoperto che era HSP<\/h2>\n<p>Elizabeth Witteveen Rhijnsburger (43 anni) vive con suo marito Jan Peter a Zeewolde. Insieme formano una famiglia affettuosa con il loro cane Puk e i gatti Bram e Pien. \u201cPer noi sono davvero come figli,\u201d racconta 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>\u201cPer me e mio marito \u00e8 stato un periodo molto difficile. Ti affidi all\u2019esperienza dei medici mentre vivi nell\u2019incertezza di ci\u00f2 che emerger\u00e0.\u201d<\/p>\n<h2>Vivere con l\u2019HSP<\/h2>\n<p data-start=\"940\" data-end=\"1007\">La malattia ha un grande impatto sulla vita quotidiana di Elizabeth. \u201cL\u2019HSP influisce praticamente su tutto. Ho bisogno di assistenza 24 ore su 24. Mio marito si prende cura di me e ha persino dovuto lasciare il lavoro, perch\u00e9 era sempre pi\u00f9 preoccupato e io non posso pi\u00f9 restare sola.\u201d<\/p>\n<p>\u201cLa sfida pi\u00f9 grande per me \u00e8 che ho bisogno di molto aiuto e ho solo circa il 25 per cento della mia energia. Questo significa che ogni giorno devo fare delle scelte. Non \u00e8 facile, perch\u00e9 l\u2019energia \u00e8 qualcosa di difficile da definire. Ti rendi conto di quanto sia preziosa solo quando ne perdi sempre di pi\u00f9. Da quando ho ricevuto la diagnosi di HSP molte cose sono cambiate. Da una parte non guarisco, ma dall\u2019altra finalmente tutti i pezzi del puzzle sono andati al loro posto. Questo mi d\u00e0 serenit\u00e0 mentale e mi aiuta psicologicamente.\u201d<\/p>\n<p data-start=\"1586\" data-end=\"1664\">Nella sua famiglia sono presenti diverse malattie muscolari, anche se l\u2019HSP non era mai stata diagnosticata. \u201cRisale a cinque generazioni, sempre da madre a figlia. Purtroppo mia madre e mia nonna sono morte, quindi non posso pi\u00f9 parlarne con loro.\u201d<\/p>\n<h2>Godersi le piccole cose<\/h2>\n<p>Elizabeth parla apertamente dei cambiamenti nella sua vita. \u201cOrmai ho trovato sempre pi\u00f9 il mio equilibrio nella vita quotidiana, anche se a volte rimane una sfida. Questo anche perch\u00e9 sono piuttosto testarda. A 28 anni sono stata dichiarata completamente inabile al lavoro. \u00c8 stato molto difficile da accettare. Mi sembrava di aver ricevuto improvvisamente un\u2019etichetta. Nonostante ci\u00f2, ho continuato a fare volontariato, ma quando anche quello non \u00e8 stato pi\u00f9 possibile, ho dovuto smettere. Con l\u2019HSP bisogna continuare ad adattarsi ogni volta che la malattia peggiora. Non \u00e8 facile.\u201d<\/p>\n<p>Nonostante tutto, Elizabeth cerca consapevolmente di godersi le piccole cose della vita. \u201cOggi apprezzo le piccole cose. Mi piace leggere libri e riviste della biblioteca, guardare la televisione per rilassarmi e stare all\u2019aperto sulla mia sedia a rotelle quando c\u2019\u00e8 bel tempo. Sono cresciuta nella fede e da l\u00ec traggo molta forza. Ho anche imparato ad apprezzare piccoli momenti, come gli alberi da frutto in fiore o gli uccelli che volano nel cielo.\u201d<\/p>\n<h2>Il mio messaggio agli altri<\/h2>\n<p>Elizabeth ritiene importante che le persone sappiano di pi\u00f9 sull\u2019HSP. \u201cQuello che gli altri dovrebbero sapere sull\u2019HSP \u00e8 che si tratta di una malattia progressiva. Fortunatamente esistono buoni ausili e possibilit\u00e0 di trattamento dei sintomi che possono aiutare nella vita quotidiana.\u201d<\/p>\n<p>\u201cAlle altre persone con HSP vorrei dire: cercate di godervi le piccole cose. Guardate ci\u00f2 che potete ancora fare e trovate l\u00ec la vostra felicit\u00e0. La vita \u00e8 troppo breve.\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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