{"id":2811,"date":"2020-01-12T20:59:14","date_gmt":"2020-01-12T20:59:14","guid":{"rendered":"https:\/\/dev.division5.co\/public\/dsalbania\/?post_type=lajmet-e-fundit&p=2811"},"modified":"2021-12-23T13:30:50","modified_gmt":"2021-12-23T13:30:50","slug":"koment-mbi-statistikat-e-vitit-2018-per-individet-me-sindromen-down-ne-shqiperi","status":"publish","type":"latest_news_dsa","link":"https:\/\/www.dsalbania.org\/new\/latest_news_dsa\/koment-mbi-statistikat-e-vitit-2018-per-individet-me-sindromen-down-ne-shqiperi\/","title":{"rendered":"Koment mbi statistikat e vitit 2018 p\u00ebr individ\u00ebt me sindrom\u00ebn Down n\u00eb Shqip\u00ebri"},"content":{"rendered":"\n
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Fondacioni Down Syndrome Albania, n\u00eb bashk\u00ebpunim me departamentin e Sh\u00ebrbimit Social Shtet\u00ebror, pran\u00eb Ministris\u00eb s\u00eb Sh\u00ebndet\u00ebsis\u00eb dhe Mir\u00ebqenies Sociale, kan\u00eb nxjerr\u00eb statistikat e reja t\u00eb individ\u00ebve me sindrom\u00ebn Down q\u00eb jetojn\u00eb n\u00eb Shqip\u00ebri dhe jan\u00eb pjes\u00eb e skem\u00ebs s\u00eb Kominisionit Mjek\u00ebsor t\u00eb Caktimit t\u00eb Aft\u00ebsis\u00eb p\u00ebr Pun\u00eb (KMCAP). Sipas raportit m\u00eb t\u00eb fundit t\u00eb gjeneruar nga regjistri elektronik komb\u00ebtar t\u00eb nxjerr\u00eb me dt 30.01.2019 aktualisht, n\u00eb Shqip\u00ebri, jetojn\u00eb 682 individ\u00eb me sindrom\u00ebn Down. Numri i individ\u00ebve me sindrom\u00ebn Down n\u00eb Shqip\u00ebri n\u00eb vitin 2006 ka qen\u00eb 643 individ\u00eb.<\/h3>\n

K\u00ebt\u00eb vit DSA k\u00ebrkoi q\u00eb regjistri elektronik t\u00eb identifikoj\u00eb dhe numrin e personave me SD q\u00eb kan\u00eb p\u00ebrfituar pages\u00ebn e kujdestaris\u00eb si rrjedhoj\u00eb e aft\u00ebsis\u00eb s\u00eb kufizuar t\u00eb thell\u00eb. Jan\u00eb 375 persona (52% e popullsis\u00eb totale me SD) q\u00eb kan\u00eb p\u00ebrfituar dhe pages\u00ebn e kujdestaris\u00eb. Fatkeq\u00ebsisht ky \u00ebsht\u00eb nj\u00eb tregues q\u00eb mungesa e sh\u00ebrbimeve terapeutike p\u00ebr individ\u00ebt me SD, po thellon shkall\u00ebn e aft\u00ebsis\u00eb s\u00eb tyre t\u00eb kufizuar.<\/h3>\n

Numri m\u00eb madh i popullsis\u00eb me SD n\u00eb Shqip\u00ebri \u00ebsht\u00eb grupmosha 26-36 vje\u00e7. E ndjekur nga grupmosha 19-25 vje\u00e7. Numri m\u00eb i vog\u00ebl i p\u00ebrket grupmosh\u00ebs 0-3 vje\u00e7.<\/h3>\n

Fondacioni yn\u00eb \u00ebsht\u00eb duke lobuar q\u00eb e drejta p\u00ebr pages\u00ebn e kujdestaris\u00eb t’i njihet ligj\u00ebrisht individ\u00ebve me SD, jo si nj\u00eb tregues i shkall\u00ebs s\u00eb tyre t\u00eb aft\u00ebsis\u00eb s\u00eb kufizuar por si nj\u00eb mjet financiar i domosdosh\u00ebm i cili do t’i ndihmonte familjar\u00ebt e k\u00ebtyre personave t\u00eb aksesojn\u00eb sh\u00ebrbimet e nevojshme terapeutike pran\u00eb organizatave q\u00eb i ofrojn\u00eb k\u00ebto sh\u00ebrbime apo pran\u00eb operator\u00ebve t\u00eb tjer\u00eb privat. Ky mjet financiar \u00ebsht\u00eb i nevojsh\u00ebm po ashtu p\u00ebr familjet, p\u00ebr t\u00eb paguar privatisht nj\u00eb m\u00ebsues ndihm\u00ebs p\u00ebr f\u00ebmij\u00ebt n\u00eb mosh\u00eb shkollore apo parashkollore (\u00e7erdhe dhe kop\u00ebsht) deri n\u00eb momentin q\u00eb t\u00eb gjitha klasat q\u00eb kan\u00eb f\u00ebmij\u00eb me SD t\u00eb jen\u00eb pajisur me m\u00ebsues ndihm\u00ebs me koh\u00eb t\u00eb plot\u00eb.<\/h3>\n

Individ\u00ebt me sindrom\u00ebn Down s\u00ebmuren m\u00eb shpesh se pjesa tjet\u00ebr e popullat\u00ebs, pasi kjo gjendje gjenetike prek (dob\u00ebson) sistemin imunitar t\u00eb tyre. Si rrjedhoj\u00eb shpenzimet p\u00ebr medikamente jan\u00eb m\u00eb t\u00eb shpeshta p\u00ebr ta. Ky \u00ebsht\u00eb nje faktor tjet\u00ebr q\u00eb b\u00ebn t\u00eb nevojsh\u00ebm sigurimin e pages\u00ebs s\u00eb kujdestaris\u00eb p\u00ebr personat me SD.<\/h3>\n

Pas nj\u00eb beteje disa vje\u00e7are DSA ka arritur t\u00eb bind\u00eb\u00a0shtetin shqiptar dhe ministrin\u00eb e sh\u00ebndet\u00ebsis\u00eb q\u00eb t\u00eb rimbursoj\u00eb analiz\u00ebn gjenetike t\u00eb foshnjave me suspekt trisomy 21 (SD), pasi kjo analiz\u00eb prej 8 vitesh mund t\u00eb kryhej vet\u00ebn klinika private me nj\u00eb kosto (duke filluar nha 300 euro) t\u00eb pap\u00ebrballueshme p\u00ebr familjar\u00ebt. Pamund\u00ebsia p\u00ebr t\u00eb kryer analiz\u00ebn pengonte familjet p\u00ebr t’u drejtuar p\u00ebr komisionim pran\u00eb KMCAP, duke penguar k\u00ebshtu p\u00ebrfitimin e pages\u00ebs si rrjedhoj\u00eb e aft\u00ebsis\u00eb s\u00eb kufizuar.<\/h3>\n

Pagesa e aft\u00ebsis\u00eb s\u00eb kufizuar p\u00ebr nj\u00eb person me SD \u00ebshte 10,140 lek\u00eb\/muaj. Nd\u00ebrsa pagesa e kujdestaris\u00eb n\u00eb rast kur p\u00ebrfitohet \u00ebsht\u00eb po ashtu 10,140 lek\u00eb\/muaj.<\/h3> <\/div>\n<\/div>\n\t
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Fondacioni Down Syndrome Albania, n\u00eb bashk\u00ebpunim me departamentin e Sh\u00ebrbimit Social Shtet\u00ebror, pran\u00eb Ministris\u00eb s\u00eb Sh\u00ebndet\u00ebsis\u00eb dhe Mir\u00ebqenies Sociale, kan\u00eb nxjerr\u00eb statistikat e reja t\u00eb individ\u00ebve me sindrom\u00ebn Down q\u00eb jetojn\u00eb n\u00eb Shqip\u00ebri dhe jan\u00eb pjes\u00eb e skem\u00ebs s\u00eb Kominisionit Mjek\u00ebsor t\u00eb Caktimit t\u00eb Aft\u00ebsis\u00eb p\u00ebr Pun\u00eb (KMCAP). Sipas raportit m\u00eb t\u00eb fundit t\u00eb gjeneruar nga regjistri elektronik komb\u00ebtar t\u00eb nxjerr\u00eb me dt 30.01.2019 aktualisht, n\u00eb Shqip\u00ebri, jetojn\u00eb 682 individ\u00eb me sindrom\u00ebn Down. Numri i individ\u00ebve me sindrom\u00ebn Down n\u00eb Shqip\u00ebri n\u00eb vitin 2006 ka qen\u00eb 643 individ\u00eb. K\u00ebt\u00eb vit DSA k\u00ebrkoi q\u00eb regjistri elektronik t\u00eb identifikoj\u00eb dhe numrin e personave me SD q\u00eb kan\u00eb p\u00ebrfituar pages\u00ebn e kujdestaris\u00eb si rrjedhoj\u00eb e aft\u00ebsis\u00eb s\u00eb kufizuar t\u00eb thell\u00eb. Jan\u00eb 375 persona (52% e popullsis\u00eb totale me SD) q\u00eb kan\u00eb p\u00ebrfituar dhe pages\u00ebn e kujdestaris\u00eb. Fatkeq\u00ebsisht ky \u00ebsht\u00eb nj\u00eb tregues q\u00eb mungesa e sh\u00ebrbimeve terapeutike p\u00ebr individ\u00ebt me SD, po thellon shkall\u00ebn e aft\u00ebsis\u00eb s\u00eb tyre t\u00eb kufizuar. Numri m\u00eb madh i popullsis\u00eb me SD n\u00eb Shqip\u00ebri \u00ebsht\u00eb grupmosha 26-36 vje\u00e7. E ndjekur nga grupmosha 19-25 vje\u00e7. Numri m\u00eb i vog\u00ebl i p\u00ebrket grupmosh\u00ebs 0-3 vje\u00e7. Fondacioni yn\u00eb \u00ebsht\u00eb duke lobuar q\u00eb e drejta p\u00ebr pages\u00ebn e kujdestaris\u00eb t’i njihet ligj\u00ebrisht individ\u00ebve me SD, jo si nj\u00eb tregues i shkall\u00ebs s\u00eb tyre t\u00eb aft\u00ebsis\u00eb s\u00eb kufizuar por si nj\u00eb mjet financiar i domosdosh\u00ebm i cili do t’i ndihmonte familjar\u00ebt e k\u00ebtyre personave t\u00eb aksesojn\u00eb sh\u00ebrbimet e nevojshme terapeutike pran\u00eb organizatave q\u00eb i ofrojn\u00eb k\u00ebto sh\u00ebrbime apo pran\u00eb operator\u00ebve t\u00eb tjer\u00eb privat. Ky mjet financiar \u00ebsht\u00eb i nevojsh\u00ebm po ashtu p\u00ebr familjet, p\u00ebr t\u00eb paguar privatisht nj\u00eb m\u00ebsues ndihm\u00ebs p\u00ebr f\u00ebmij\u00ebt n\u00eb mosh\u00eb shkollore apo parashkollore (\u00e7erdhe dhe kop\u00ebsht) deri n\u00eb momentin q\u00eb t\u00eb gjitha klasat q\u00eb kan\u00eb f\u00ebmij\u00eb me SD t\u00eb jen\u00eb pajisur me m\u00ebsues ndihm\u00ebs me koh\u00eb t\u00eb plot\u00eb. Individ\u00ebt me sindrom\u00ebn Down s\u00ebmuren m\u00eb shpesh se pjesa tjet\u00ebr e popullat\u00ebs, pasi kjo gjendje gjenetike prek (dob\u00ebson) sistemin imunitar t\u00eb tyre. Si rrjedhoj\u00eb shpenzimet p\u00ebr medikamente jan\u00eb m\u00eb t\u00eb shpeshta p\u00ebr ta. Ky \u00ebsht\u00eb nje faktor tjet\u00ebr q\u00eb b\u00ebn t\u00eb nevojsh\u00ebm sigurimin e pages\u00ebs s\u00eb kujdestaris\u00eb p\u00ebr personat me SD. Pas nj\u00eb beteje disa vje\u00e7are DSA ka arritur t\u00eb bind\u00eb\u00a0shtetin shqiptar dhe ministrin\u00eb e sh\u00ebndet\u00ebsis\u00eb q\u00eb t\u00eb rimbursoj\u00eb analiz\u00ebn gjenetike t\u00eb foshnjave me suspekt trisomy 21 (SD), pasi kjo analiz\u00eb prej 8 vitesh mund t\u00eb kryhej vet\u00ebn klinika private me nj\u00eb kosto (duke filluar nha 300 euro) t\u00eb pap\u00ebrballueshme p\u00ebr familjar\u00ebt. Pamund\u00ebsia p\u00ebr t\u00eb kryer analiz\u00ebn pengonte familjet p\u00ebr t’u drejtuar p\u00ebr komisionim pran\u00eb KMCAP, duke penguar k\u00ebshtu p\u00ebrfitimin e pages\u00ebs si rrjedhoj\u00eb e aft\u00ebsis\u00eb s\u00eb kufizuar. Pagesa e aft\u00ebsis\u00eb s\u00eb kufizuar p\u00ebr nj\u00eb person me SD \u00ebshte 10,140 lek\u00eb\/muaj. Nd\u00ebrsa pagesa e kujdestaris\u00eb n\u00eb rast kur p\u00ebrfitohet \u00ebsht\u00eb po ashtu 10,140 lek\u00eb\/muaj.<\/p>\n

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