UK mw'itohoza kw'ishure ryapfiriyeko abana batewe imiti ifise imigera, harimwo n'uwa SIDA

Abajejwe amatohoza batanguye kwumviriza abahoze ari abanyeshure kw'ishure ry'abamugaye mu Bwongereza inyuma y'aho abana barenga 120 kuri iryo shure bapfiriye mu ciswe ikiza kitari bwigere kibaho muri kahise k'ikigo kijejwe ivy'amagara mu gihugu (NHS).

Kuva mu 1974 gushika 1987, abo bana baravuwe indwara yitwa haemophilia kw'ishure ryisumbuye rya Treloar's College.

N'imiburiburi abana 72 barapfuye batewe umuti urimwo imigera ya SIDA n'indwara y'igitigu(canke umwijima mu Kinyarwanda).

Imbere y'uko yumvirizwa, Richard Warwick yahoze yiga kw'iryo shure riri mu karere ka Hampshire mu mpera z'imyaka ya za 70, mu nyuma akaba yagiye gupimwa agasanga yaranduye SIDA, yabwiye BBC ati: "Twaraburiye abagenzi benshi kw'ishure rya Treloar kandi ni ibintu vy'incamugongo".

Iri tohoza ry'ingene hakoreshejwe amaraso yanduye ryatanguye ku wa mbere igihe humvirizwa abantu bafitaniye isano n'iryo shure.

Uwahoze arirongoye, Alec Macpherson, ni umwe mu bategerezwa kwisigura. Yabwiye BBC ati: "Vyarateye agahinda kenshi n'umujinya mwinshi abo bahungu".

"Vyabashizemwo uburakari - kubera iki jewe, kubera iki ibi vyambayeko, kubera iki nafashwe n'iyi ndwara iteye ubwoba?"

Lord Mayor's Treloar's College ryari ishure ry'indaro ry'abana bafise ubumuga bw'umubiri rikaba ryari rifise ikigo kidasanzwe cegukira NHS, catwarwa n'umurwi w'abaganga b'abahinga.

Hagati mu myaka ya 1970, umuti mushasha wo kuvura haemophilia wari uzwi nkafactor VIII/IX, warabonetse ubwa mbere.

Uwu muti washobora gufasha abo bose bari bafise ibibazo vyo mu maraso kubaho mu buzima busanzwe ata ngorane yo kuvirirana.

NHS nta plasma y'amaraso ikwiye yari ifise kugira ngo ishobore guhingura uwo muti, bikaba vyari ngombwa ko iyigura mu mahanga, cane cane muri Reta Zunze Ubumwe za Amerika.

Amaraso menshi yaguzwe yari yandujwe imigera y'igitigu (hépatite/hepatitis) co mu bwoko bwa A, B na C, mu nyuma asangwamwo umugera wa SIDA, ibihumbi n'ibihumbi vy'abafise iyi ndwara ya haemophilia mu gihugu cose bakaba barandujwe iyi migera.

Ade Goodyear yinjiiye kw'iryo shure rya Treloar mu 1980 afise imyaka 10. Avuga ko ubuzima bwari "buryoshe cane" kubera abigisha, abaforoma n'abagenzi bamwitaho cane.

Kumwe n'abandi banyeshure batari bake kw'iryo shuri, na we yahawe umuti factor VIII kugira ngo umugabanirize kuvirirana.

Ati: "Ntewe urushinge rwa mbere gusa, naciye nandura igitigu baca banshira ukwa jenyene mu kiringo c'indwi zibiri".

Mu 1985 yajanywe mu biro bitoya ari kumwe n'umurwi w'abanyeshure maze abwirwa ko yanduye umugera wa SIDA - umugera wari uherutse gutorwa ico gihe, ata muti wariho kandi wica ningoga.

Ati: "Muganga yarashavuye adutuma urutoke avuga ati, urawufise, hanyuma ati ntawo ufise. Naciye nsubira mw'ishure isaha indwi n'iminota 50 [13h50]. Nta n'uko naruhutse ku mutaga".

"Umwe mu bagenzi yafashe agakono k'amashurwe akamena ku ruhome rw'inyubakwa y'ikigo ca haemophilia. Wari umusi mwiza, mu ci, ndibuka ukuntu naharura imisi y'akazuba nari ngiye kumara".

Bakuru ba Ade babiri bahavuye bapfa inyuma yo guterwa umuti factor VIII - Jason yahitanywe na SIDA mu 1997, Gary nawe apfa mu 2015 kubera ibibazo bijanye n'igitigu co mu bwoko bwa C (hépatite C).

Ku bana nka Ade na Richard, vyasigura kubaho mu buzima buteye isoni kuba wanduye iyo ndwara itari izwi cane.

Abamenyeshamakuru bakora mu binyamakuru bitandukanye barihereranije abanyeshure hanze y'ishuri, bose baguma babaza ibibazo ku bijanye n'uko boba baranduye SIDA.

32 kuri 122 bari bafise indwara ya haemophilia bize kuri iryo shure kuva mu 1974 gushika 1987 baracariho uno musi. Abandi hafi bose barafuye banduye umugera wa SIDA canke hépatite C.

Abantu barizeye ko iri tohoza ririko rirakorwa rizoshobora gutanga inyishu ku bibazo vyibazwa ku bijanye n'ivyabaye kw'iryo shure rya Treloar no kuri ico kigo co kuvura iyi ndwara ya haemophilia cegukira NHS.

Imiryango yaburiye kuri iryo shure ishaka kumenya igituma itamenyeshejwe izi ngorane zashobora guterwa n'umuti factor VIII imbere y'igihe hamwe n'igituma vyafashe imyaka myinshi imbere y'uko babanza guteka iyi miti kugira ngo bice imigera yarimwo.

Stephen Nicholls yahoze yiga kw'iryo shuri akandura hépatite C inyuma yo guterwa uwo muti avuga ati: "Ivyabereye kw'iryo shuri vyama bigaruka kuduhahamura imisi yose gushika ubu".

"Ntituzigera twibagira namba ivyabaye kw'iryo shure rya Treloar n'ivyatubayeko vyose".

Haemophilia ni iki?

Ni indwara idakunze kuboneka cane, aho amaraso adatembera neza. Akenshi ikunze gufata abagabo.

Abantu bafise iyi ngorane ntibaronka indemamubiri (protéines) zitwa factor VIII na IX zituma amaraso atembera neza.

Muri ino ndwi, abahoze biga kw'iryo shure hamwe n'abavyeyi bahaburiye abana babo bariko batanga ivyemezo.

Ikigo co kuvura haemophilia kuri iryo shure cari kirongowe n'abaganga hamwe n'abaforoma begukira NHS, ntibari abakozi begukira iryo shure n'ubu rikibandanya ryakira abana bafise ubumuga gushika ubu.

Iri shure ryasohoye itangazo aho rivuga riti: "N'aho gushika ubu ata n'umwe aravuga ko ishure rya Treloar rifise amakosa, ni ikintu kibabaje cane muri kahise kacu".

"Carabaye, kandi n'ubu kiracari igihe kibabaje cane ku banyeshure bahoze biga ng'aha, imiryango yabo n'abakozi b'ico gihe".

"Turashigikiye cane iri sekeza kugira aba banyeshure bahoze biga hano bamenye ukuri, baronke inyishu ku bibazo vyabo bongere batunganirizwe".