07/09/2020
Autor:
Nataša Lučić
Izvor: Info Press
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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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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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Mladi košarkaš Konstantin Karapetrović pred novim izazovima
Konstantin Karapetrović talentovani užički košarkaš je sa nepunih 15 godina otišao u Italiju, kako bi unapredio svoj košarkaški razvoj. Trenutno je na odmoru u svom rodnom gradu i razmišlja gde će nastaviti karijeru.… […]
Oblačno i hladno vreme, mestimično slaba kiša
oš jedan tmuran decembarski dan u Srbiji. Očekuje se oblačno i hladno vreme, ponegde uz slabu kišu ili rosulu. Na planinama će provejavati slab sneg. Duvaće slab severni vetar.
Izdaje se radionica za mehaničarske i limarsko-farbarske usluge u Čačku
Izdajem radionicu za mehaničarske usluge sa 4 dizalice u užem centru grada. Izdajem radionicu za limarsko- farbarske usluge sa komorom u užem centru grada. Informacije možete dobiti na: 062/162 1111
Pročitaj slične vesti
Posadjene 54 sadnice listopadnog i četinarskog drveća u parku u Atenici
U okviru projekta koji se već nekoliko godina sprovodi u Čačku, u reonskom parku kod crkve u Atenici posadjene su 54 sadnice listopadnog i zimzelenog drveća. Projekat pošumljavanja i ozelenjavanja gradskog i prigradskog… […]
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