{"id":9644,"date":"2024-12-03T09:46:30","date_gmt":"2024-12-03T09:46:30","guid":{"rendered":"https:\/\/jurmed.ro\/pacienti\/?p=9644"},"modified":"2024-12-03T09:46:30","modified_gmt":"2024-12-03T09:46:30","slug":"calitatea-vietii-familiilor-afectate-de-boli-rare-este-sever-compromisa","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/pacienti\/calitatea-vietii-familiilor-afectate-de-boli-rare-este-sever-compromisa\/","title":{"rendered":"Calitatea vietii familiilor afectate de boli rare este sever compromisa"},"content":{"rendered":"<p><strong>Pentru familiile pacientilor cu boli rare, fiecare zi este o lupta continua. De la impactul emotional si psihologic pana la dificultatile financiare si sociale, povara acestor afectiuni se extinde mult dincolo de dimensiunea medicala. Statisticile arata ca majoritatea bolilor rare debuteaza in copilarie, iar responsabilitatea ingrijirii revine, in mare parte, parintilor. Acest tip de ingrijire intensa si continua necesita sacrificii semnificative, atat personale, cat si profesionale, pe fondul unor resurse si servicii de sprijin extrem de limitate.<\/strong><\/p>\n<p><strong>\u00a0<\/strong>Provocari economice si sociale. Impactul <a href=\"https:\/\/jurmed.ro\/pacienti\/ingrijirea-si-monitorizarea-pacientilor-cu-boli-rare-din-mediul-rural-si-din-zonele-izolate-o-problema-reala-in-romania\/\">bolilor rare<\/a> asupra familiilor este alarmant:<\/p>\n<ul>\n<li>75% dintre parinti raporteaza efecte negative asupra relatiei de cuplu.<\/li>\n<li>Peste 50% dintre familii observa o scadere a cercului social dupa diagnosticarea copilului.<\/li>\n<li>38% dintre parinti isi reduc programul de lucru, iar 34% renunta complet la locul de munca pentru a ingriji copilul.<\/li>\n<\/ul>\n<p>Aceste date ilustreaza povara economica si emotionala pe care o suporta familiile, afectand calitatea vietii tuturor membrilor. In plus, parintii copiilor cu boli rare raporteaza frecvent lipsa serviciilor specializate, accesul dificil la tratamente si o izolare sociala profunda.<\/p>\n<p>Organizatiile de pacienti, precum <strong>ARC Rare<\/strong>, joaca un rol crucial in sprijinirea pacientilor si a familiilor acestora. <strong>Dorica Dan<\/strong>, presedinta ARC Rare, subliniaza: <em>\u201cProvocarile psihosociale si lipsa accesului la servicii de sprijin reduc calitatea vietii familiilor persoanelor cu boli rare. Studiile evidentiaza importanta utilizarii unui model biopsihosocial pentru a minimiza efectele negative asupra familiilor si pacientilor. Doar prin sprijin activ si colaborare putem face ca nicio familie sa nu se simta izolata sau abandonata.\u201d<\/em><\/p>\n<p>In contextul imbunatatirii continue a ingrijirii pacientilor cu boli rare si a familiilor acestora, <strong>Alianta Nationala pentru Boli Rare Romania<\/strong> si <strong>Asociatia Romana de Cancere Rare<\/strong> organizeaza al saselea webinar din seria Share Experience 2024, intitulat <strong>\u201eFamiliile: Cine are grija de ele?\u201d<\/strong>, transmis la nivel global de catre IAACD (International Alliance of Academies of Childhood Disability) prin platforma <strong>Listening and Sharing Sessions<\/strong>. Acest eveniment isi propune sa abordeze provocarile majore cu care se confrunta pacientii si familiile.<\/p>\n<p>Invitati la acest webinar au fost: <strong>Nicoleta Vaia<\/strong> &#8211; Presedinte Asociatia de Suport pentru Mastocitoza, <strong>Adrian Croitoru<\/strong> &#8211; Presedinte Asociatia DMD\u00a0Care, <strong>Radu Ganescu<\/strong> \u2013 Presedinte COPAC si <strong>Rafael\u00a0Reitmeyer<\/strong> &#8211; Presedinte Asociatia Copiilor Cu Sindrom Hunter din Romania.<\/p>\n<p><em>\u201cFamilia este cea mai importanta parte atunci cand vorbim de un copil cu o anumita boala rara, este complementara echipei medicale si cred ca este nevoie sa avem programe de suport si sprijin pentru astfel\u00a0de\u00a0familii!\u201c<\/em> \u2013 spune <strong>Radu Ganescu<\/strong> \u2013 Presedinte COPAC.<\/p>\n<p><strong>Mastocitoza, o boala oncologica rara, genereaza provocari complexe atat pentru pacienti, cat si pentru familiile lor.<\/strong> La primirea diagnosticului, familiile adultilor diagnosticati cu mastocitoza manifesta trei tipare comportamentale: refuzul diagnosticului si al tratamentului, ceea ce conduce, adesea, la agravarea bolii; dificultati emotionale care pot duce la destramarea relatiilor \u2013 15% dintre pacientele femei sunt parasite de parteneri; si, din fericire, o categorie majoritara in care familia formeaza o echipa unita, sprijinind pacientul in gestionarea bolii.<\/p>\n<p><strong>In cazul copiilor cu mastocitoza, reticenta parintilor de a accesa ingrijiri specializate reprezinta o bariera semnificativa.<\/strong> Peste 60% dintre parinti refuza consulturile necesare pentru diagnosticare corecta, iar mai mult de 30% raman in contact cu medici fara competente in aceasta afectiune, ceea ce duce la agravarea bolii copiilor. Dupa acceptarea diagnosticului corect, insa, aproximativ 75% dintre parinti vin in mod regulat cu copiii la controale.<\/p>\n<p><em>\u201cFamilia joaca, asadar un rol determinant in calitatea vietii bolnavului de mastocitoza si nu odata am fost mediator in situatii de criza, pentru a rezolva conflictele generate de neacceptarea diagnosticului.\u201c<\/em> \u2013 a declarat <strong>Nicoleta Vaia<\/strong> &#8211; Presedinte Asociatia de Suport pentru Mastocitoza.<\/p>\n<p><strong>Pentru Adrian Croitoru, presedinte al Asociatiei DMD Care, lupta pentru pacientii cu boli rare porneste din experienta personala si din dorinta de a face diferenta pentru familiile care traiesc zilnic realitati dure.<\/strong> In spatele fiecarui caz exista o poveste emotionanta \u2013 parinti care isi dedica viata sprijinirii copilului lor si pacienti care cauta speranta intr-un sistem adesea nepregatit sa raspunda nevoilor lor.<\/p>\n<p><em>\u201eAceasta motivatie se naste din vulnerabilitate, intrebari fara raspuns si instinctul de a lupta, nu doar pentru propriul copil, ci pentru toate familiile aflate in suferinta. Schimbarea incepe prin educatie, comunicare deschisa si sprijin activ, pentru ca nicio familie sa nu se mai simta izolata sau abandonata intr-un moment atat de fragil.\u201d<\/em> &#8211; a declarat <strong>Adrian Croitoru<\/strong> &#8211; Presedinte Asociatia DMD\u00a0Care.<\/p>\n<p>Familiile pacientilor cu boli rare sunt pilonii centrali ai procesului de ingrijire, oferind sprijin emotional, fizic si financiar in fata unor provocari multiple. Aceste familii trebuie recunoscute ca parteneri esentiali in echipele medicale, iar programele de suport dedicate lor sunt vitale pentru a asigura o calitate mai buna a vietii pacientilor.<\/p>\n<p><em>\u00a0<\/em><em>Webinarul <strong>\u201eFamiliile: Cine are grija de ele?\u201d<\/strong> marcheaza ultima editie din seria <strong>Share Experience 2024<\/strong>, un proiect <\/em><em>organizat de <strong>Alianta Nationala pentru Boli Rare Romania<\/strong> si <a href=\"https:\/\/decisepoate.ro\/\"><strong>Asociatia Romana de Cancere Rare<\/strong><\/a> cu sprijinul Ipsen, <\/em><em>Sanofi, Roche, Johnson &amp; Johnson, Pfizer, Bristol Myers Squibb, UCB Pharma, MSD.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pentru familiile pacientilor cu boli rare, fiecare zi este o lupta continua. De la impactul emotional si psihologic pana la dificultatile financiare si sociale, povara acestor afectiuni se extinde mult [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":9645,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[783,1172,1326,838,1322,1321,1325,1323,1324],"class_list":["post-9644","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati","tag-arc-rare","tag-asociatia-romana-de-cancere-rare","tag-asociatiai-dmd-care","tag-copac","tag-experience-2024","tag-mastocitoza","tag-rafael-reitmeyer","tag-share-experience-2024","tag-sindrom-hunter"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Calitatea vietii familiilor afectate de boli rare este sever compromisa - 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