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Svetski dan Dišenove mišićne distrofije obeležen i u Užicu

Svetski dan Dišenove mišićne distrofije obeležen i u Užicu

07/09/2020

Autor: 

Nataša Lučić

Izvor: Info Press

Foto: Info Press

Sedmi  septembar od  2014. godine obeležava se kao Svetski dan Dišenove mišićne distrofije, za sada neizlečive retke bolesti distrofije mišića koja se javlja uglavnom kod dečaka u ranom detinjstvu.

Na osnovu preporuke Svetske organizacije  Dan Dišenove mišićne distrofije  ustanovlјen je radi promovisanja i predstavlјanja prava i mogućnosti osoba obolelih od ove neuromišićne bolesti, jer  nedostatak svesti o ovoj bolesti, izmedju ostalog,  doprinosi zakašnjenju u dijagnostikovanju i lečenju od dve i po godine u proseku. Prvi put Dan Dišenove mišićne distrofije ove godine obeležava se i na nacionalnom nivou,  a manifestaciji  se priključilo i Udruženje distrofičara Zlatiborskog okruga.

Prema statistici Dišenova mišićna distrofija javlja se kod jednog od 3 500,  uglavnom muške novorodjenčadi, a u osnovi ove bolesti nalaze se različite mutacije u genu za mišićni protein distrofin, koje onemogućavaju njegovu proizvodnju.  

Prve manifestacije ove bolesti uočavaju se u uzrastu izmedju druge i šeste godine života kroz mišićnu slabost nadkolenice i karlice, otežano ustajanje i pojavu deformiteta kičme. U daljem toku bolesti javljaju se mišićne atrofije, deformiteti, a već od 15-te godine bolesnici gube mogućnost samostalnog hoda. Vrlo često već u 12-toj godini  oboleloj deci potrebna su invalidska kolica. 

“Svest o samom postojanju ove retke  bolesti i naročito njenim manifestacijama, načinu kako se ispoljava, izuzetno  je važna  kako zbog same dece, tako  i njihovih roditelja imajući u vidu sve probleme  sa kojima se suočavaju. Ove godine Savez distrofičara nacionalnom nivou prvi put priključio se obeležavanju  ove manifestacije pod sloganom “Zajedno smo jači”. U ovogodišnjoj kampanji tema koja se obradjuje u  stručnim krugovima je “Dišen i moždane funkcije” s obzirom da nedostatak proteina distrofina pogadja pored mišića i mozak i moždane funkcije, pa kasnije sve to povezano je sa  različitim manifestacija bolesti i posledicama koje u njenom razvoju nastaju. Rano otkrivanje, skrining i naučna istraživanja presudno su važna za ovu bolest za koju još uvek nema leka.  Svest o postojanju ove bolesti na širem društvenom planu važna je zbog obolele dece, njihovih prava , mogućnosti za lečenje, njihovih roditelja i svesti sa kojim se problemima oni suočavaju. Izuzetno je važno ukazati na prve simptome bolesti, što kasnije implicira  adekvatniji tretman i pravilno lečenje obolelih. Na širem društvenom planu svest o postojanju i svim aspektima Dišenove mišićne distrofije daje mogućnost obolelima da postanu ravnopravni članovi društvene zajednice”, kaže Čedomir Cicović, koordinator Info centra za osobe sa invaliditetom Užica.

Deca iz Predškolske ustanove Užice pustila su danas crvene balone  sa porukom “Zajedno smo jači “ kao  simbol nade za obolele od Dišenove mišićne distrofije,  a u znak podrške ovoj manifestaciji i svim ljudima koji se suočavaju sa posledicama ove bolesti, Gradska kuća u Užicu  večeras će biti osvetljena  crvenom bojom.  

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Svetski dan Dišenove mišićne distrofije obeležen i u Užicu

07/09/2020
Autor:
Nataša Lučić
Izvor: Info Press
Foto: Info Press

Sedmi  septembar od  2014. godine obeležava se kao Svetski dan Dišenove mišićne distrofije, za sada neizlečive retke bolesti distrofije mišića koja se javlja uglavnom kod dečaka u ranom detinjstvu.

Na osnovu preporuke Svetske organizacije  Dan Dišenove mišićne distrofije  ustanovlјen je radi promovisanja i predstavlјanja prava i mogućnosti osoba obolelih od ove neuromišićne bolesti, jer  nedostatak svesti o ovoj bolesti, izmedju ostalog,  doprinosi zakašnjenju u dijagnostikovanju i lečenju od dve i po godine u proseku. Prvi put Dan Dišenove mišićne distrofije ove godine obeležava se i na nacionalnom nivou,  a manifestaciji  se priključilo i Udruženje distrofičara Zlatiborskog okruga.

Prema statistici Dišenova mišićna distrofija javlja se kod jednog od 3 500,  uglavnom muške novorodjenčadi, a u osnovi ove bolesti nalaze se različite mutacije u genu za mišićni protein distrofin, koje onemogućavaju njegovu proizvodnju.  

Prve manifestacije ove bolesti uočavaju se u uzrastu izmedju druge i šeste godine života kroz mišićnu slabost nadkolenice i karlice, otežano ustajanje i pojavu deformiteta kičme. U daljem toku bolesti javljaju se mišićne atrofije, deformiteti, a već od 15-te godine bolesnici gube mogućnost samostalnog hoda. Vrlo često već u 12-toj godini  oboleloj deci potrebna su invalidska kolica. 

“Svest o samom postojanju ove retke  bolesti i naročito njenim manifestacijama, načinu kako se ispoljava, izuzetno  je važna  kako zbog same dece, tako  i njihovih roditelja imajući u vidu sve probleme  sa kojima se suočavaju. Ove godine Savez distrofičara nacionalnom nivou prvi put priključio se obeležavanju  ove manifestacije pod sloganom “Zajedno smo jači”. U ovogodišnjoj kampanji tema koja se obradjuje u  stručnim krugovima je “Dišen i moždane funkcije” s obzirom da nedostatak proteina distrofina pogadja pored mišića i mozak i moždane funkcije, pa kasnije sve to povezano je sa  različitim manifestacija bolesti i posledicama koje u njenom razvoju nastaju. Rano otkrivanje, skrining i naučna istraživanja presudno su važna za ovu bolest za koju još uvek nema leka.  Svest o postojanju ove bolesti na širem društvenom planu važna je zbog obolele dece, njihovih prava , mogućnosti za lečenje, njihovih roditelja i svesti sa kojim se problemima oni suočavaju. Izuzetno je važno ukazati na prve simptome bolesti, što kasnije implicira  adekvatniji tretman i pravilno lečenje obolelih. Na širem društvenom planu svest o postojanju i svim aspektima Dišenove mišićne distrofije daje mogućnost obolelima da postanu ravnopravni članovi društvene zajednice”, kaže Čedomir Cicović, koordinator Info centra za osobe sa invaliditetom Užica.

Deca iz Predškolske ustanove Užice pustila su danas crvene balone  sa porukom “Zajedno smo jači “ kao  simbol nade za obolele od Dišenove mišićne distrofije,  a u znak podrške ovoj manifestaciji i svim ljudima koji se suočavaju sa posledicama ove bolesti, Gradska kuća u Užicu  večeras će biti osvetljena  crvenom bojom.  

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