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Ehlers-Danlosov sindrom je rijedak genetski poremećaj i smatra se "nevidljivom bolešću".

Stephanie Aston, 33, umrla je u svom domu u Aucklandu na Novom Zelandu 1. rujna nakon duge borbe s Ehlers-Danlosovim sindromom (EDS), piše nova.rs.

EDS je rijedak genetski poremećaj koji utječe na vezivna tkiva u tijelu, a postoji 13 različitih varijanti stanja. Poremećaj se smatra ‘nevidljivom bolešću‘ jer oboljeli često izgledaju prilično zdravi unatoč bolnim simptomima koji uključuju jake migrene, iščašene zglobove, lake modrice, bolove u trbuhu, nedostatak željeza, nesvjesticu i abnormalno brz rad srca.

Stefani je rekla da je 2016. doktor odbacio njezine simptome i rekao joj da je "sve u njezinoj glavi". Također joj je rekao da uopće ne misli da je bolesna, već da je sama sebi uzrokovala mućninu. Pogrešna dijagnoza dovela je do toga da je optužena za samoozljeđivanje, poremećaje prehrane, lažiranje groznice, napadaje kašlja i nesvjestice, a čak je stavljena i pod psihijatrijski nadzor.

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"Osjećam se kao da mi je oduzeto dostojanstvo i da su moja prava ozbiljno povrijeđena", rekla je Stephanie za NZ Herald.

Nakon što se žalila povjereniku za zdravstvo i invalidnost (HDC), rekla je da je dijagnoza dodatno negativno utjecala na njezino zdravlje. Menal Dugal, zamjenik povjerenika HDC-a za rješavanje pritužbi, presudio je u svibnju 2017. da nije uloga ureda da poništi ili potvrdi spornu dijagnozu. Ured stoga nije poduzeo nikakve daljnje radnje nakon presude.

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Ehlers-Danlosov sindrom je rijedak genetski poremećaj i smatra se "nevidljivom bolešću".

Stephanie Aston, 33, umrla je u svom domu u Aucklandu na Novom Zelandu 1. rujna nakon duge borbe s Ehlers-Danlosovim sindromom (EDS), piše nova.rs.

EDS je rijedak genetski poremećaj koji utječe na vezivna tkiva u tijelu, a postoji 13 različitih varijanti stanja. Poremećaj se smatra ‘nevidljivom bolešću‘ jer oboljeli često izgledaju prilično zdravi unatoč bolnim simptomima koji uključuju jake migrene, iščašene zglobove, lake modrice, bolove u trbuhu, nedostatak željeza, nesvjesticu i abnormalno brz rad srca.

Stefani je rekla da je 2016. doktor odbacio njezine simptome i rekao joj da je "sve u njezinoj glavi". Također joj je rekao da uopće ne misli da je bolesna, već da je sama sebi uzrokovala mućninu. Pogrešna dijagnoza dovela je do toga da je optužena za samoozljeđivanje, poremećaje prehrane, lažiranje groznice, napadaje kašlja i nesvjestice, a čak je stavljena i pod psihijatrijski nadzor.

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"Osjećam se kao da mi je oduzeto dostojanstvo i da su moja prava ozbiljno povrijeđena", rekla je Stephanie za NZ Herald.

Nakon što se žalila povjereniku za zdravstvo i invalidnost (HDC), rekla je da je dijagnoza dodatno negativno utjecala na njezino zdravlje. Menal Dugal, zamjenik povjerenika HDC-a za rješavanje pritužbi, presudio je u svibnju 2017. da nije uloga ureda da poništi ili potvrdi spornu dijagnozu. Ured stoga nije poduzeo nikakve daljnje radnje nakon presude.

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Panoramarijedak poremećaj

Djevojka preminula nakon što su joj liječnici rekli da misli da ima rijetku bolest i optužili je za samoozljeđivanje

Piše MOZAIK SD
8. rujna 2023. - 11:22
25588542
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Ehlers-Danlosov sindrom je rijedak genetski poremećaj i smatra se "nevidljivom bolešću".

Stephanie Aston, 33, umrla je u svom domu u Aucklandu na Novom Zelandu 1. rujna nakon duge borbe s Ehlers-Danlosovim sindromom (EDS), piše nova.rs.

EDS je rijedak genetski poremećaj koji utječe na vezivna tkiva u tijelu, a postoji 13 različitih varijanti stanja. Poremećaj se smatra ‘nevidljivom bolešću‘ jer oboljeli često izgledaju prilično zdravi unatoč bolnim simptomima koji uključuju jake migrene, iščašene zglobove, lake modrice, bolove u trbuhu, nedostatak željeza, nesvjesticu i abnormalno brz rad srca.

Stefani je rekla da je 2016. doktor odbacio njezine simptome i rekao joj da je "sve u njezinoj glavi". Također joj je rekao da uopće ne misli da je bolesna, već da je sama sebi uzrokovala mućninu. Pogrešna dijagnoza dovela je do toga da je optužena za samoozljeđivanje, poremećaje prehrane, lažiranje groznice, napadaje kašlja i nesvjestice, a čak je stavljena i pod psihijatrijski nadzor.

"Osjećam se kao da mi je oduzeto dostojanstvo i da su moja prava ozbiljno povrijeđena", rekla je Stephanie za NZ Herald.

Nakon što se žalila povjereniku za zdravstvo i invalidnost (HDC), rekla je da je dijagnoza dodatno negativno utjecala na njezino zdravlje. Menal Dugal, zamjenik povjerenika HDC-a za rješavanje pritužbi, presudio je u svibnju 2017. da nije uloga ureda da poništi ili potvrdi spornu dijagnozu. Ured stoga nije poduzeo nikakve daljnje radnje nakon presude.

#RIJETKA BOLEST#UMIRANJE#DJEVOJČICA
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12. svibanj 2024 06:02