{"id":7008,"date":"2021-01-21T15:29:20","date_gmt":"2021-01-21T15:29:20","guid":{"rendered":"https:\/\/jurmed.ro\/pacienti\/?p=7008"},"modified":"2021-01-21T15:29:20","modified_gmt":"2021-01-21T15:29:20","slug":"copiii-cu-scleroza-multipla-sustinuti-si-in-2020","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/pacienti\/copiii-cu-scleroza-multipla-sustinuti-si-in-2020\/","title":{"rendered":"Copiii cu scleroz\u0103 multipl\u0103 sus\u021binu\u021bi \u0219i \u00een 2020"},"content":{"rendered":"<p style=\"text-align: justify\"><strong><em>\u00a0<\/em><\/strong><strong>2020 a fost un an dificil pentru pacien\u021bii cronici, dar copiii cu scleroz\u0103 multipl\u0103 \u0219i p\u0103rin\u021bii lor au fost fost \u00een continuare sus\u021binu\u021bi prin programul \u2018MS Kids\u2019 al Asocia\u021biei Pacien\u021bilor cu Afec\u021biuni Neurodegenerative (<\/strong><a href=\"http:\/\/www.facebook.com\/APANRomania\"><strong>APAN Rom\u00e2nia<\/strong><\/a><strong>).<\/strong><\/p>\n<p style=\"text-align: justify\"><em>\u201cNe bucur\u0103m nespus de mult c\u0103 am reu\u0219it s\u0103 sus\u021binem \u00een acest an \u0219i a patra edi\u021bie a programului #MSKids2020!\u201c<\/em>, declar\u0103 <strong>Cristina Vl\u0103d\u0103u, vicepre\u0219edintele asocia\u021biei<\/strong>. <em>\u201c<\/em><em>Fiind obi\u0219nui\u021bi ca pacien\u021bi cronici cu izolarea \u0219i lucrul de acas\u0103 \u0219i av\u00e2nd ca resurse flexibilitatea, adaptarea \u0219i conectarea, am reu\u0219it s\u0103 ne mobiliz\u0103m rapid, am str\u00e2ns fonduri prin Swim@Home \u0219i am ajustat proiectul. Chiar dac\u0103 avem regretul c\u0103 nu am mai reu\u0219it s\u0103 ne \u00eent\u00e2lnim offline, am transformat totul \u00eentr-un program mai puternic, cu un impact \u0219i mai mare. Num\u0103rul de beneficiari a crescut la 23 de copii cu scleroz\u0103 multipl\u0103 \u0219i familiile acestora.<\/em><em>\u201c<\/em><\/p>\n<p style=\"text-align: justify\">Scleroza multipl\u0103 (SM) este o boal\u0103 inflamatorie mediat\u0103 autoimun caracterizat\u0103 prin modific\u0103ri demielinizante ale sistemului nervos central. \u00cen timp ce are multe asem\u0103n\u0103ri cu SM cu debut la adul\u021bi, SM pediatric\u0103 prezint\u0103 o serie de diferen\u021be (de exemplu, recidive mai frecvente \u0219i severe, dar care sunt urmate de o recuperare mai rapid\u0103). Chiar dac\u0103 SM afecteaz\u0103 de obicei adul\u021bii, exist\u0103 un num\u0103r tot mai mare de cazuri de SM \u00een copil\u0103rie \u0219i adolescen\u021b\u0103. \u201c<em>Deoarece debutul SM coincide cu o etap\u0103 de dezvoltare rapid\u0103 a sistemului nervos central, copiii pot experimenta o serie de afect\u0103ri psihologice \u0219i cognitive. Ca rezultat, s-a dovedit c\u0103 deficitele neuropsihologice au un spectru larg de influen\u021be negative \u00een contextul educa\u021biei \u0219i a calit\u0103\u021bii vie\u021bii \u00een general. Exist\u0103, de asemenea, dovezi c\u0103 SM pediatric\u0103 are un impact negativ asupra \u00eengrijitorilor copiilor, inclusiv asupra aspectelor psihologice, sociale \u0219i legate de ocuparea for\u021bei de munc\u0103. \u00cen plus, sentimentele de vinov\u0103\u021bie, stresul, lipsa de informa\u021bii adecvate, lipsa timpului \u0219i preocuparea pentru viitorul copilului pot agrava \u0219i mai mult consecin\u021bele psihosociale d\u0103un\u0103toare \u00een r\u00e2ndul \u00eengrijitorilor, \u00een principal p\u0103rin\u021bi.<\/em>\u201d, precizeaz\u0103 <strong>dr. Carmen Burloiu, medic neurolog pediatru<\/strong>, manager Centru SM, Spitalul Clinic de Psihiatrie prof. dr. Alexandru Obregia.<\/p>\n<p style=\"text-align: justify\">De\u0219i exist\u0103 o lips\u0103 a studiilor care abordeaz\u0103 problemele SM pediatrice, fiind necesare cercet\u0103ri \u0219i abord\u0103ri suplimentare, <strong>nevoile neacoperite la copiii\/adolescen\u021bii cu SM \u0219i \u00eengrijitorii<\/strong> lor pot fi rezumate, conform APAN Rom\u00e2nia:<\/p>\n<ul style=\"text-align: justify\">\n<li><strong>Sprijin educa\u021bional<\/strong> pentru copii \/ adolescen\u021bi cu SM<\/li>\n<li><strong>Sprijin practic, financiar<\/strong> \u0219i<strong> suport din partea angajatorilor<\/strong> pentru \u00eengrijitori<\/li>\n<li>Sus\u021binerea <strong>s\u0103n\u0103t\u0103\u021bii mintale<\/strong> pentru copii \/ adolescen\u021bi cu SM \u0219i \u00eengrijitorii lor<\/li>\n<li><strong>Con\u0219tientizarea profesioni\u0219tilor<\/strong> din s\u0103n\u0103tate cu privire la SM pediatric\u0103, diagnosticarea la timp \u0219i coordonarea \u00eengrijirii<\/li>\n<li>Sprijin pentru <strong>aderen\u021ba la tratament<\/strong><\/li>\n<li><strong>Informa\u021bii<\/strong>\/educare \u0219i o mai bun\u0103 <strong>con\u0219tientizare<\/strong> a SM pediatrice pentru a reduce stigma, izolarea \u0219i discriminarea.<\/li>\n<\/ul>\n<p style=\"text-align: justify\">Exist\u0103 dovezi asupra efectelor negative pe care SM le are \u00een ceea ce prive\u0219te performan\u021ba \u0219colar\u0103, func\u021bionarea social\u0103, exerci\u021biul fizic general, calitatea vie\u021bii \u0219i angajarea ulterioar\u0103. Barierele adapt\u0103rii includ oboseala, efectele adverse ale tratamentelor \u0219i, \u00een cazul \u0219colii, lipsa cuno\u0219tin\u021belor profesorilor.<\/p>\n<p style=\"text-align: justify\"><a href=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2021\/01\/copii-cu-scleroza-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-7010\" src=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2021\/01\/copii-cu-scleroza-1-300x153.jpg\" alt=\"\" width=\"300\" height=\"153\" srcset=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2021\/01\/copii-cu-scleroza-1-300x153.jpg 300w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2021\/01\/copii-cu-scleroza-1.jpg 400w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>\u201e<em>Este al patrulea an \u00een care lucrez cu copiii cu SM \u0219i p\u0103rin\u021bii lor \u00een programul #MSKids \u0219i consider c\u0103 ajutorul moral, informa\u021bional \u0219i psihologic pe care APAN \u00eel ofer\u0103 este de mare impact. Copiii au ar\u0103tat anul acesta un mare curaj, unii au dorit s\u0103 fac\u0103 \u0219edin\u021be de terapie pentru a discuta despre noile preocup\u0103ri, al\u021bii \u0219i-au determinat p\u0103rin\u021bii s\u0103 fac\u0103 program\u0103ri pentru consiliere psihologic\u0103. Mi-au amintit c\u0103 SM este doar o problem\u0103 suplimentar\u0103 \u00eentr-o lume deja complicat\u0103. Da, injec\u021biile dor \u0219i las\u0103 urme, dar le este mult mai dificil s\u0103 fac\u0103 fa\u021b\u0103 emo\u021biilor \u0219i experien\u021belor care se schimb\u0103 constant, scad sau cresc \u00een intensitate, pe care nu le \u00een\u021beleg \u0219i asupra c\u0103rora nu au prea mult control. <\/em><\/p>\n<p style=\"text-align: justify\"><em>P\u0103rin\u021bii copiilor \u0219i adolescen\u021bilor cu SM, care s-au \u00eenscris \u00een proiect, au ar\u0103tat o mare deschidere \u0219i implicare \u00een \u00eent\u00e2lnirile de terapie. Am fost pl\u0103cut surprins\u0103 c\u0103 mul\u021bi dintre ei au adus \u00een discu\u021bie dificult\u0103\u021bile pe care le-au identificat \u00een dinamica familiei lor \u00een urma informa\u021biilor prezentate \u00een webinarul APAN. Mul\u021bi dintre ace\u0219ti oameni minuna\u021bi \u0219i-au amintit c\u0103 \u0219i ei sunt importan\u021bi, au \u00eenceput s\u0103 acorde aten\u021bie propriilor nevoi \u0219i au \u00een\u021beles c\u0103 sunt responsabili pentru propria lor bun\u0103stare, ridic\u00e2nd \u00eencet aceast\u0103 responsabilitate de pe umerii copiilor lor.<\/em> \u201d, <strong>Irina Uricariu, psihoterapeut specializat \u00een SM<\/strong>, Institutul Psychos Bucure\u0219ti.<\/p>\n<p style=\"text-align: justify\">\u201e<em>Am \u00eenceput terapia psihologic\u0103 cu un terapeut minunat \u0219i empatic. M\u0103 ajut\u0103 s\u0103-mi gestionez via\u021ba personal\u0103, deoarece de la \u00eenceputul sclerozei multiple a fiicei mele, am uitat de mine, c\u0103 am \u0219i eu nevoi \u0219i c\u0103 trebuie s\u0103 fiu bun\u0103 cu mine pentru a o sus\u021bine \u00een mod corespunz\u0103tor. Aceste sesiuni gratuite, precum \u0219i sprijinul informa\u021bional excelent din partea doamnei neurolog pe care l-am primit la webinarul APAN (plin de informa\u021bii practice \u0219i utile), sunt un ajutor binevenit. Am at\u00e2ta nevoie de comunicare&#8230; Consider c\u0103 bicicleta de recuperare pe care fiica mea a primit-o este o speran\u021b\u0103 \u0219i o va ajuta \u00een mod practic s\u0103-\u0219i recapete at\u00e2t \u00eencrederea \u00een sine, c\u00e2t \u0219i s\u0103 mearg\u0103 din nou. Leg\u0103tura cu ceilal\u021bi adolescen\u021bi cu SM a ajutat-o \u200b\u200bs\u0103 c\u00e2\u0219tige mai mult dec\u00e2t prieteni.<\/em>\u201d <strong>Dana, mam\u0103 copil cu SM<\/strong>.<\/p>\n<p style=\"text-align: justify\">Un num\u0103r de 160 de ore de psihoterapie online au fost acordate p\u0103rin\u021bilor \u0219i adolescen\u021bilor prin intermediul psihologilor specializa\u021bi \u00een SM de la Institutul Psychos Bucure\u0219ti. 23 de echipamente pentru recuperarea medical\u0103 au fost date copiilor, const\u00e2nd \u00een 20 biciclete orizontale pentru recuperare, spaliere \u0219i echipamente pentru gimnastic\u0103 (chingi, greut\u0103\u021bi, mingi).<\/p>\n<p style=\"text-align: justify\">\u201c<em>Anul acesta nu am avut cum s\u0103 \u00eenlocuim interac\u021biunea, experien\u021bele, emo\u021biile, dar am reu\u0219it s\u0103 le oferim copiilor \u0219i p\u0103rin\u021bilor informa\u021bii importante, esen\u021biale, \u00een cadrul unui webinar, iar materialele \u00eenregistrate vor fi de folos \u0219i noilor diagnostica\u021bi!<\/em>\u201d poveste\u0219te Silvia Dinulescu, coordonator proiect MS Kids 2020. \u201c<em>\u00cen plus, \u0219edin\u021bele de psihoterapie au fost primite cu entuziasm de jum\u0103tate dintre p\u0103rin\u021bi<\/em>. <em>Ceilal\u021bi au considerat c\u0103 nu au nevoie sau c\u0103 acum nu este timpul potrivit. \u0218i nici nu am insistat<\/em>! <em>Am economisit costurile logistice \u0219i am folosit aceste resurse pentru achizi\u021bionarea unor echipamente sportive de recuperare medical\u0103 \u2013 biciclete orizontale \u0219i spaliere<\/em>\u201d.<\/p>\n<p style=\"text-align: justify\">Proiectul MS Kids 2020 a avut ca parteneri Spitalul Clinic de Psihiatrie prof. dr. Alexandru Obregia \u0219i Societatea Rom\u00e2n\u0103 de Neurologie Pediatric\u0103, finan\u021barea asigur\u00e2ndu-se prin intermediul platformei Swimathon a Funda\u021biei Comunitare Bucure\u0219ti \u0219i av\u00e2nd sprijinul companiei Novartis Pharmaceuticals.<\/p>\n<p style=\"text-align: justify\">APAN Rom\u00e2nia adun\u0103 prin proiectele MS Kids dovezi despre nevoile \u0219i experien\u021bele sclerozei multiple pediatrice. Acest lucru demonstreaz\u0103 lacune majore \u00een politicile \u0219i sistemele de sprijin existente \u00een \u021bara noastr\u0103, pe care deciden\u021bii politici le pot utiliza pentru a acoperi golurile din politicile existente \u0219i pentru a spori calitatea \u00eengrijirii at\u00e2t a copiilor c\u00e2t \u0219i a \u00eengrijitorilor acestora.<\/p>\n<p style=\"text-align: justify\">\n","protected":false},"excerpt":{"rendered":"<p>\u00a02020 a fost un an dificil pentru pacien\u021bii cronici, dar copiii cu scleroz\u0103 multipl\u0103 \u0219i p\u0103rin\u021bii lor au fost fost \u00een continuare sus\u021binu\u021bi prin programul \u2018MS Kids\u2019 al Asocia\u021biei Pacien\u021bilor [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":7009,"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":[],"class_list":["post-7008","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - 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