'Natewe amaraso incuro 36 zose nibungenze'

''Kuva maze kubona mu maso ubwa mbere agakobwa kanje, naciye nibagira ububabare bwose nagize ncibungenze. Nararize n'umugabo wanje ararira". Uko niko Kinjal Lathi, wo muri Ahmedabad mu Buhinde avuga.

Gushika ico gihe, kurongorwa canke kwitwa umuvyeyi vyari nk'indoto za kure kuri Kinjal, kubera yari afise ikibazo gikomeye ca 'beta thalassemia', ingwara yo mu maraso ituma umuntu adashobora kwinjiza mu mubiri Oxygen ikwiye, biturutse ku mubiri wiwe uba utavukanye ubushobozi bwo gukora kamwe mu turemangingo (cells) two mu maraso (hemoglobines), bita red blood cells. Izo hemoglobines nizo zifasha gukwiragiza oxygen mu ngingo zose zigize umubiri, biciye mu kuzunguruka kw'amaraso. Kinjal yategerezwa guterwa amaraso uko indwi zibiri ziheze, kandi agakwirikiza amategeko mu gufungura agafata n'imiti.

Hejuru y'ico kibazo c'amaraso yari asanganywe, hongeyeko ikibazo co kudashobora gusama, canke iyo asamye imbanyi ntishike aho umwana avuka.

Kinjal yagize ati:"Hari impungenge ku muvyeyi n'umwana aba yibungenze. Ariko nafashe ingingo yo gushira mu ngiro indoto zanje".

Kinjal yahawe amaraso incuro 36 zose igihe yari yibungenze ariko yahavuye yibaruka umwana w'umukobwa ameze neza cane mu kwezi kw'indwi mu 2019.

Yari yafashe ingingo yo kuzobagwa mu kuvyara, kugirango ntatakaze amaraso menshi.

N'inyuma yo kwibaruka, "nategerezwa gukomeza guhabwa amaraso, niko uyu muvyeyi w'imyaka 25 avuga, aho igihe kimwe yabwirizwa guhabwa ayo maraso kandi ariko aronsa agahinja yaheruka kwibaruka.

Ico kibazo c'amaraso ariko yagize amahirwe, umwana wiwe ntiyagitoranye.

Thalassamia iterwa n'uko uduce ntangakamare (genes) tuba twateje ikibazo umubiri mu gihe co guhingura uturemangingo (cells) two mu maraso twa hemoglobines, ari nayo atwara oxygene.

Umwana ntashobora kuvukana thalassaemia, kiretse abavyeyi biwe bompi bafise iyo ngwara mu maraso yabo.

Iyo abavyeyi bompi bafise uturemangingo twahuye n'ico kibazo co gutera beta thalassaemia major haba hari ivyago ko umwe ku bana bane bavyaye, ashobora kuvukana iyo ngwara.

Abavyeyi bavyaye umwana agaragaza thalassaemia mu bisanzwe nabo baba bafise kamwe mu duce ntangakamere (genes) twayo ariko kadatuma bagaragaza ingwara (abo bita helathy carriers/ porteurs sains). Kugirango umuntu agaragaze thalassemia rero n'uko aba afise uduce ntangakamere (genes) tubiri tubitse iyo ngwara yatoranye ku bavyeyi bompi, gutyo ya ngwara ikabona guseruka.

None thalassemia ihindura gute ubushobozi bwo gutwara inda?

Kuba Kinjal yarashoboye gusama ni ibintu vy'imbonekarimwe, nk'uko Doctor Anil Khatri, umuhinga mu kuvura abana (paediatrician) akaba no mu mugwi w'abanganga bahanganye n'iki kibazo ca thalassemia muri leta ya Gujarat abivuga.

Yavuye umuvyeyi n'umwana. Avuga ko ibi bidakunze gushika, ku buryo atari bwabone abantu bagera kw'ijana bafise iki kibazo ca thalassemia mu myaka 30 amaze mu mwuga.

Mw'isi yose hari miliyoni 270 z'abantu bafise iyo ngwara ya thalassemia, nk'uko bitangazwa n'ubushikiranganji bw'amagara y'abantu n'imibereho myiza y'imiryango mu Buhinde.

N'ingwara ibabaza ica intege, ituma umuntu adahumeka neza, ntashobore gukora, ikagabanya n'amahigwe yiwe yo kuramba.

Hari ubwoko bwinshi bwa thalassemia, harimwo ingwara ya Hemoglobin H.

Izi zishobora kugabanywa mu mice ibiri, ya alpha na beta thalassemia- beta thalassemia major (TM) ikaba ari yo ikaze cane gusumba.

Ubuhinde buharura abana bari hagati ya 100,000 na150,000 bafise TM, ari naco gitigiri kinini ca mbere kw'isi.

Buri mwaka mu bihinde havuka abana bari hagati ya 10,000 na 15,000 bavukana iyo ngwara.

Gutwara inda vyonyene biragora ku muntu asanganywe ikibazo ca thalassemia, nk'uko bivugwa na Doctor Uma Khatri, umuhinga mu buvuzi bw'ingwara zifatira mu bihimba vy'irondoka.

Kwibaruka umwana ubwa mbere hoho biragoye ku muntu afise thalassemia, niko uyo muganga w'umu gynecologue Dr Uma Khatri, yanavuye Kinjal asigura.

Guterwa amaraso incuro kenshi bitera ikibazo mu duce tw'ubwonko bita hypothalamus, pituitary n'akandi gasaho gatanga imisemburo ya adrenaline hamwe n'imisemburo ifasha mu gutanga ubushobozi bwo kuvyara.

Kugumiza urugero rwiza rw'ivyunyunyu vya iron/ fer mu mubiri, mu gihe umuntu ariko ahabwa amaraso, kugirango ntahave agira nyinshi mu maraso.

Mu gihe umuntu yibungenze, urugero rw'amaraso mu mubiri ruraduga, kandi n'ivyunyunyu nka iron/fer umuntu akeneye mu mubiri no mu gutwara oxygen mu maraso y'umwana ari munda bikiyongera.

"Abarwayi ba thalassemia iyo bagize amaraso arimwo iron/fer nyinshi igihe baba bariko bahabwa amaraso biciye mu mutsi, mu bisanzwe baca bahabwa umuti wo kugabanya ico cunyunyu ariko iyo umuntu yibungenze kuko birashobora kubangamira ibihimba vy'imbere mu mubiri w'umuvyeyi yibungenze, niko Doctor Uma Khatri avuga.

Agira ati: "Mu bisanzwe dukwirikirana abagore bibungenze tukabasuzuma. Twasuzuma Kinjal uko indwi zibiri zirangiye. Ibi vyari bibaye ubwa mbere natwe ubwacu tubibonye.

Yongerako ko buri kwezi bakorera umuvyeyi igipimo co kwumviriza ko umwana ari mu nda ameze neza kandi akura neza.

Kuki bamwe mu bakundana bisuzumisha ngo bamenye ibibazo uruvyaro rwabo rushobora gutorana?

Bivanye n'ikibazo iyo nda yari guteza mu mubiri wa Kinjal, birumvikana ko umugabo wiwe Naveen Lathia yari afise ubwoba.

Naveen yavuze ko yari "afise ubwoba bwo kubura Kinjal ahitanywe n'ukurondera uruvyaro." Ariko kubera umugore yari ashimitse, yirengagije urugero rw'impungenge, akomeza kwifuza kuronka umwana, yahavuye atangura gukora ubushashatsi. Naveen ntiyigeze abona umugore n'umwe yoba yaragwaye thalassemia akavyara umwana ameze neza. "Ariko amaze ku(bi)ganira n'umuganga, 'nari niteguye", niko Naveen avuga.

Inyuma yo kuvyara, abaganga bahanuye Kinjal kuguma ku bifungurwa bitetswe muhira, kandi ntaje ahari amakoraniro menshi y'abantu kugirango agabanye ivyago vyo guhura n'ingwara zandukira.

Dr Khatri yavuze ko abarwayi ba TM, bafise ivyago vyo gufatwa n'ingwara zandukira kubera ibihimba vy'umubiri bikomakomeye nk'umutima, amafyigo n'amahaha biba vyarononekaye ku buryo ubudahangarwa bw'umubiri wabo buheza bukagabanuka cane.

Kwipimisha imbere y'ubugeni ku bashaka kwubakana canke ku bagore bibungenze, bakongerako kuganira n'abaganga, ni akamenyero kamaze gukwiragira hirya no hino mu Buhinde, aho abaharurwa mu mariyoni basaba ubwo bufasha.

Dr Anil Khatri ahanura abashaka kurushinga mu Buhinde y'uko imbere yo kwubakana, bakwiye kubanza kwipimisha bakaraba nimba ata kibazo bavukanye mu maraso yabo.