Ifoto yerekana umwana uri gupimwa Sickle Cell kwa muganga, nyina amuri hafi, inyuma hakaba icyapa gikangurira abaturage kwipimisha hakiri kare.
Indwara y’uturemangingo tw’amaraso izwi nka Sickle Cell (Drépanocytose) ikomeje guteza impungenge mu Rwanda, bitewe n’ingaruka igira ku buzima bw’abayirwaye, cyane cyane abana. Inzego z’ubuzima n’abafatanyabikorwa barasaba abaturage kongera ubumenyi kuri iyi ndwara, kwipimisha hakiri kare no gukurikirana abana bayivukanye kugira ngo hirindwe ingaruka zikomeye ishobora kubatera.
Nasson Nduwamungu, umukozi mu Ihuriro ry’imiryango nyarwanda itari iya leta ikumira kandi ikarwanya indwara zitandura (RNCDA), yabigarutseho mu mahugurwa yateguriwe abanyamakuru agamije kubongerera ubumenyi kuri Sickle Cell, abasaba kugira uruhare mu kugeza amakuru yizewe kuri iyi ndwara ku baturage.
Yavuze ko itangazamakuru rifite uruhare rukomeye mu gukangurira Abanyarwanda kumenya iyi ndwara, ibimenyetso byayo n’akamaro ko kuyipimisha hakiri kare.
Dr. Ntaganda Evariste, Umuyobozi w’ishami ry’indwara z’umutima mu kigo gishinzwe ubuzima RBC, yavuze ko hatangiye ibikorwa by’ubukangurambaga bigamije gushishikariza abaturage kwipimisha no kongerera abaganga ubumenyi ku ndwara ya Sickle Cell mu bice bitandukanye by’igihugu.
Yasobanuye ko kutamenya uko abashakanye bahagaze kuri iyi ndwara bishobora gutuma babyara umwana uyivukanye, ntamenyekane hakiri kare, bikamuviramo ibibazo bikomeye by’ubuzima.
Ati: “Abantu bashyingiranwa batabizi ko bafite iyi ndwara kuko abenshi batipimisha. Iyo umwana ayivukanye ntakurikiranwe agira ibibazo bikomeye birimo kurwaragurika, kubura amaraso, uburibwe bukabije, kudakura neza ndetse no gupfa atarageza ku myaka itanu.”
Dr. Ntaganda yasobanuye ko Sickle Cell ari indwara umuntu avukana, ayikomora ku babyeyi be. Iyo umwe mu babyeyi afite akaremangingo kayitera, undi akaba atagafite, umwana ashobora kutarwara mu buryo bukomeye, ariko iyo bombi bafite ako karemangingo, haba hari ibyago byo kubyara umwana ufite indwara ya Sickle Cell.
Imibare yatangajwe n’Ishami ry’Umuryango w’Abibumbye ryita ku Buzima (OMS) igaragaza ko mu 2021 iyi ndwara yagize uruhare mu rupfu rw’abana bari munsi y’imyaka itanu bagera ku 81.100 ku isi. Muri Afurika kandi, buri mwaka abana bagera ku 240.000 bavukana Sickle Cell.
OMS igaragaza kandi ko hagati ya 50% na 80% by’abana bavukana iyi ndwara muri Afurika bashobora gupfa batarageza ku myaka itanu, ahanini bitewe n’indwara zibasira umubiri, kubura amaraso bikabije n’izindi ngaruka zayo.
Umwe mu babyeyi bafite umwana urwaye Sickle Cell yavuze ko kurera umwana uyirwaye bisaba guhora amwitaho no kumujyana kwa muganga, kuko ahora ahura n’ibibazo by’ubuzima. Yagaragaje kandi ko rimwe na rimwe kumenya indwara umwana afite bitinda, bitewe n’uko hari abaganga batarayisobanukirwa bihagije.
Yagize ati: “Habeho amahugurwa menshi mu bigo nderabuzima kugira ngo abana bavukanye Sickle Cell bitabweho hakiri kare. Umubyeyi ufite umwana uyirwaye aba afite ikibazo gikomeye, kuko ahora asiragira kwa muganga ashaka ubufasha.”
Jean Marie Barinzi, umukozi ushinzwe ubuzima bw’ababyeyi n’abana, na we yemeza ko iyi ndwara ihangayikishije imiryango myinshi, asaba abitegura kurushinga kubanza kwipimisha kugira ngo bamenye uko bahagaze ku bijyanye n’iyi ndwara.
Yavuze ko kumenya uko buri wese ahagaze bifasha abashakanye gufata ibyemezo bishingiye ku makuru y’ubuzima bwabo, bityo bakitegura neza.
Ati: “Kubana muzi ko umwe muri mwe afite ubwo burwayi cyangwa se ko mutabufite bituma mumenya neza uko ubuzima bwanyu buhagaze. Niba mutaripimishije mbere yo kubyara, mukabyara umwana uhora arwaragurika, mukwiye gukurikirana impamvu y’uburwayi bwe kugira ngo avurwe hakiri kare.”
Nubwo nta bushakashatsi bwuzuye buragaragaza umubare nyawo w’abantu bose bafite Sickle Cell mu Rwanda, inyigo zakozwe mu bitaro byo mu Mujyi wa Kigali n’i Butare zagaragaje ko nibura 2.7% by’abana bavutse bari bafite akaremangingo ka HbS gashobora gutera iyi ndwara.
Ikibazo gikomeye ni uko abaturage bamwe batarasobanukirwa neza Sickle Cell, ku buryo hari abayitiranya n’uburozi cyangwa izindi ndwara, bigatuma abana bamwe batamenyekana cyangwa ngo bahabwe ubuvuzi bukwiye ku gihe.
Ikindi kibazo ni umubare muto w’abaganga b’inzobere mu ndwara z’amaraso (Hematologists), ndetse n’uko amwe mu mavuriro y’ibanze atarabona ibikoresho bihagije byo gupima iyi ndwara.
Inzego z’ubuzima zirakangurira Abanyarwanda kwipimisha, cyane cyane abitegura kurushinga, no kujyana kwa muganga abana bagaragaza ibimenyetso by’uburwayi budasanzwe, kugira ngo Sickle Cell imenyekane hakiri kare kandi abayirwaye bahabwe ubuvuzi bubafasha kubaho neza.
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