Uwitwa Mujawimana Clementine utuye ku Muhima muri Nyarugenge, amaze kugira imbyaro 4 zose, aho abana bavuka bava amaraso adakama, ariko nyuma yo kumenya ko arwaje Hemofiliya byamuhaye agahenge.

Ati "Mpora kwa muganga aho abana banjye 3 bava amaraso adakama, nkabajyana kubateza imiti. Umwana ashobora kurya nk’igisheke cyangwa guhekenya umwumbati, agatangira kuva amaraso mu kanwa."

Majawimana avuga ko we cyangwa umugabo we badafite ikibazo cyo kuva kw’amaraso adakama, ariko ko hari mukuru we ujya uva imyuna bikamara igihe kinini cyane.

Uwitwa Nsengiyumva Amos w’imyaka 29 y’amavuko, avuga ko yavukanye Hemofiliya bikabanza kumugora imyaka myinshi mu gihe ubuvuzi bw’iyo ndwara bwari butaragera mu Rwanda(mbere ya 2014).

Ku myaka itanu, Nsengiyumva yabonye mu ivi ry’ukuguru kwe habyimbye, hashira igihe gito hamera nk’ahabyimbutse, yaba arimo gukina n’abandi akagira ibyago agakomereka, yashoboraga kumara icyumweru atagarutse ku ishuri.

Ni indwara ihererekanywa kuva ku mubyeyi cyangwa undi bafitanye isano y’amaraso, ikajya muri bamwe mu bana bavuka muri uwo muryango, umuntu akaba ashobora kuvuka adafite akanyangingo(protein) gafasha amaraso kuvura.

Ako kanyangingo gatuma umuntu ugafite iyo akomeretse cyangwa uvuye amaraso abitewe n’ikindi kintu, ahita ahagarika kuva mu buryo bwihuse(hakuma), ariko utagafite we arakomeza akava, ari byo byitwa Hemofiliya.

Umuntu urwaye Hemofiliya bisaba kumutera umuti witwa ’Facteur/Factor’, bitaba ibyo akava amaraso kugera ubwo amushizemo agapfa, cyangwa agahura n’ibibazo birimo n’ubumuga budakira.

Ibimenyetso by’indwara ya Hemofiliya

Umuyobozi w’Umuryango urwanya Hemofiliya mu Rwanda(Rwanda Fraternity Against Hemophilia), Sylvestre Murindabyuma, avuga ko hari ibyo abantu bita amarozi nyamara batazi ko barwaye cyangwa barwaje iyo ndwara yo kutavura kw’amaraso.

Murindabyuma avuga ko amaraso ashobora kuvira imbere mu materaniro y’ingingo nko mu nkokora, mu mavi, mu bujana no mu bugombambari, hakabyimba hagahindura ibara, kugeza ubwo amagufa akubanaho akavunguka, umuntu agakurizamo ubumuga.

Hari n’ubwo umuntu avira mu ruhu imbere, mu turemangingo duhuza inyama n’amagufa, cyangwa mu nyama hakabyimba, amaraso akipfundika (byitwa Hamatoma).

Hari abavira mu kanwa no mu ishinya cyane cyane iyo umuntu akutse iryinyo, akomeretse ishinya bitewe no kugwa cyangwa kurya ibintu bikomeye, hakaba n’abavirirana nyuma yo gusiramurwa cyangwa guterwa urushinje.

Umuryango urwanya Hemofiliya ukomeza uvuga ko hari n’abavira mu mutwe(mu bwonko), bikagaragazwa no kugenda umuntu acika intege, akagira agasesemi, byatinda bigateza paralize, guhuma amaso cyangwa kujya muri koma y’igihe kirekire.

Murindabyuma avuga ko umuntu uva imyuna(mu mazuru) igatinda, ndetse n’imihango idakama, na bo bashobora kujya kwisumisha Hemofiliya kwa muganga, aho imashini ipima iyi ndwara iri mu bitaro bya CHUK.

Ati "Hari ababona umuntu yatangiye gukunjama n’ingingo zabyimbye, bakajya gushaka abapfumu bakamurasaga(akava), mu gihe gito wa muntu aba apfuye."

Ati "Turashima Leta y’u Rwanda uburyo batuba hafi muri ubu burwayi, twagiye tubugaragaza ariko turi bake, turabasaba kongera umurego mu kudushyigikira, ndetse ku buryo bagira n’uruhare mu gushakisha hirya no hino ababana n’ibyo bimenyetso bagapimwa, bakamenyekana, bagatabarwa hakiri kare batarapfa."

Kugeza ubu agashinge kamwe ka fagiteri(Facteur) kagurwa Amafaranga y’u Rwanda arenze miliyoni imwe n’ibihumbi 200, kandi umurwayi wa Hemofiliya ikomereye cyane aba agomba kwiteza uwo muti nibura rimwe buri cyumweru.

Umuryango Rwanda Fraternity Against Hemophilia ukaba utabariza abafite ubwo burwayi, kugira ngo bamenyekane bavurwe hakiri kare, kuko ngo bafite umuterankunga ubaha imiti y’ubuntu.

Kugeza ubu imashini iri muri CHUK imaze kubona abarwayi ba Hemofiliya 96 mu baturarwanda bagera hafi ku 1600 bikekwa ko bafite icyokibazo.

Umukozi wa RBC mu Ishami rishinzwe indwara zitandura, Dr Evariste Ntaganda, avuga ko hatangiye ubukangurambaga ku ndwara ya Hemofiliya, ndetse no guhugura abaganga bakora mu bitaro no mu bigo nderabuzima, ku buryo uwo badashoboye gufasha bahita bamwohereza ku bitaro bya CHUK kugira ngo harebwe niba atari Hemofiliya.

Dr Ntaganda yagize ati "Turagira ngo noneho abantu babimenye, uzasanga afite ikibazo azajye akigaragaza."

Ku bijyanye n’ingamba RBC izafata kubera ikibazo cy’imiti ya Hemofiliya ihenze, Dr Ntaganda avuga ko icyari kigoranye ari ukubanza kumenya imibare y’Abaturarwanda bibasiwe n’ubwo burwayi, kugira ngo bashakirwe imiti ihendutse.