Thalassemia

Thalassemia (thal-uh-SEE-me-uh) ni indwara y'amaraso ikomoka ku miryango, itera umubiri kugira hemoglobino nke ugereranyije n'ibisanzwe. Hemoglobino ituma uturindangabo dutukura tw'amaraso dutwara umwuka. Thalassemia ishobora gutera anemiya, ikagutera umunaniro.

Niba ufite thalassemia yoroheje, ushobora kutakeneye kuvurwa. Ariko iziremereye zishobora gusaba guterwa amaraso buri gihe. Urashobora gufata ingamba zo guhangana n'umunaniro, nko guhitamo indyo yuzuye no gukora imyitozo ngororamubiri buri gihe.

Hari ubwoko butandukanye bwa thalassémie. Ibimenyetso n'ibibazo ufite biterwa n'ubwoko n'uburemere bw'uburwayi bwawe.

Ibimenyetso n'ibibazo bya thalassémie birimo:

• Umunaniro
• Intege nke
• Uruhu rwera cyangwa rumeze nk'umuhondo
• Gusama kw'amagufa yo mu maso
• Gukura buhoro
• Kubyimba mu nda
• Inkari z'ijisho ryijimye

Bamwe mu bana bagaragaza ibimenyetso n'ibibazo bya thalassémie bavutse; abandi babimenya mu myaka ibiri y'ubuzima bwabo. Bamwe mu bantu bafite gene imwe gusa y'hemoglobine ikozwe nabi nta bimenyetso bya thalassémie bagira.

Niba umwana wawe afite ibimenyetso cyangwa ibimenyetso bya thalassemia, mupange gahunda yo kumusura kwa muganga kugira ngo amusuzuma.

Thalassemia iterwa n'impinduka mu miterere ya ADN y'uturemangingo dukora hemoglobin — ikintu kiri mu maraso y'umutuku gitwara umwuka mu mubiri wawe wose. Impinduka zifitanye isano na thalassemia zirakomoka ku babyeyi zijya ku bana. Ibitenge bya hemoglobin bikorwa n'imikurire yitwa alpha na beta ishobora kwibasirwa n'impinduka. Muri thalassemia, umusaruro w'imikurire ya alpha cyangwa beta ugabanuka, bigatera alpha-thalassemia cyangwa beta-thalassemia. Muri alpha-thalassemia, uburemere bwa thalassemia ufite biterwa n'umubare w'impinduka za gene uzunguka ku babyeyi bawe. Uko imikurire myinshi y'impimbazi, ni ko thalassemia yawe ikomeye. Muri beta-thalassemia, uburemere bwa thalassemia ufite biterwa n'igice cy'imikurire ya hemoglobin cyibasiwe.

Ibintu byongera ibyago byo kurwara indwara ya Thalassémie birimo:

• Amateka y'umuryango ufite indwara ya Thalassémie. Thalassémie iherwa abana n'ababyeyi bayo binyuze mu mimerere mibi y'imisemburo ya hémoglobine.
• Uko bakomoka. Thalassémie iboneka cyane mu Banyamerika b'Abirabura no mu bantu bakomoka mu bihugu byo ku nyanja ya Mediterane na Aziya y'Uburasirazuba.

Ingaruka zishobora kubaho ziterwa na thalassémie ya hagati cyangwa ikomeye zirimo:

• Umujumu wa fer (Iron overload). Abantu barwaye thalassémie bashobora kugira fer nyinshi mu mubiri wabo, biturutse kuri iyi ndwara cyangwa kubera ko bakunze guterwa amaraso. Fer nyinshi ishobora gutera ibibazo ku mutima, umwijima n'imisemburo, irimo n'ibice by'umubiri bikora imisemburo igenga imikorere y'umubiri wose.
• Dukuri (Infection). Abantu barwaye thalassémie bafite ibyago byinshi byo kwandura. Ibi ni byo cyane cyane niba baramaze gukurwa umwijima.

Mu gihe cy'indwara ikomeye ya thalassémie, izi ngaruka zishobora kubaho:

• Iguhuka ry'amagufa (Bone deformities). Thalassémie ishobora gutuma umugufi w'amagufa akura, bigatuma amagufa akura cyane. Ibi bishobora gutera ibibazo ku buryo bw'amagufa, cyane cyane mu maso no mu mutwe. Kugura kw'umugufi w'amagufa binatuma amagufa aba acike kandi adakomeye, bikongera ibyago byo kuvunika kw'amagufa.
• Kugura kw'umwijima (Enlarged spleen). Umuwijima ufasha umubiri kurwanya indwara no gukuraho ibintu bidakenewe, nka selile z'amaraso zashaje cyangwa zangiritse. Thalassémie ikunze kujyana no kurimbuka kw'iselile z'amaraso zitukura nyinshi. Ibi bituma umwijima ukura kandi ukora cyane kurusha uko bikwiye.

Umuwijima wakuze ushobora gutuma anemia iba mbi, kandi ishobora kugabanya igihe cyo kubaho kw'iselile z'amaraso zitukura zaterwemo. Niba umwijima wawe ukura cyane, muganga wawe ashobora kugutekerezaho kubagwa kugira ngo bawukureho.

• Gukura buhoro (Slowed growth rates). Anemia ishobora gutuma umwana akura buhoro kandi itinde gutera ubwiza.
• Ibibazo by'umutima (Heart problems). Kugira ikibazo cy'umutima n'umuvuduko w'amaraso utari mwiza bishobora kuba bifitanye isano na thalassémie ikomeye.

Mu madota menshi, ntabwo ushobora gukumira indwara ya thalassemia. Niba ufite thalassemia, cyangwa niba utwaye gene ya thalassemia, tekereza kuvugana n'umujyanama w'imyororokere kugira ngo aguhe ubuyobozi niba ushaka kubyara. Hariho uburyo bwo kuvura imyororokere bufashwa, busuzuma imboro mu ntangiriro za yo kugira ngo harebwe impinduka z'imiterere y'imborogongo hamwe no gutera imboro mu nda. Ibi bishobora gufasha ababyeyi bafite thalassemia cyangwa abatwaye gene mbi ya hemoglobin kugira abana bazima. Uku kuvura bikubiyemo gukuramo intanga ngore zikuze no kuzatera intanga ngabo mu isahani mu cyumba cy'ikizamini. Imboro zisuzumwa kugira ngo harebwe gene mbi, kandi izidafite ibibazo by'imiterere y'imborogongo gusa ni zo zishyirwa mu nda.

Abana benshi bafite uburwayi bwa Thalassémie buciriritse cyangwa bukomeye bagaragaza ibimenyetso n'ibibonwa mu myaka ibiri yambere y'ubuzima bwabo. Niba muganga wawe akeka ko umwana wawe arwaye Thalassémie, ashobora kwemeza uburwayi akoresheje ibizamini by'amaraso.

Ibizamini by'amaraso bishobora kugaragaza umubare w'utubuto tw'amaraso atukura n'ibihungabana mu bunini, ishusho cyangwa ibara. Ibizamini by'amaraso bishobora kandi gukoreshwa mu gusesengura ADN kugira ngo harebwe imisemburo yahindutse.

Isuzuma rishobora gukorwa mbere y'uko umwana avuka kugira ngo hamenyekane niba afite Thalassémie kandi hamenyekane uko yakomeye. Ibipimo bikoresha mu kuvura Thalassémie mu bana bataravuka birimo:

• Gupima utunyangingo tw'umwana (Chorionic villus sampling). Ibi bisanzwe bikorwa mu cyumweru cya 11 cyo gutwita, iki kizamini gikubiyemo gukuramo igice gito cy'umusemburo kugira ngo gisuzuzwe.
• Gupima amazi ari mu kibuno (Amniocentesis). Ibi bisanzwe bikorwa mu cyumweru cya 16 cyo gutwita, iki kizamini gikubiyemo gusuzuma igice cy'amazi akikije umwana uri mu nda.

Ubwoko bworoheje bwa thalassemia ntabwo bukeneye kuvurwa.

Kuri thalassemia ikomeye cyangwa ikaze, uburyo bwo kuvura bushobora kuba burimo:

Ubuvuzi bwo gukuraho ibyuma byinshi. Iyi ni yo kuvura kugira ngo ukureho ibyuma byinshi biri mu maraso yawe. Ibyuma bishobora kwiyongera kubera amaraso asanzwe ashyirwamo. Bamwe mu bantu bafite thalassemia badakunda gushyirwamo amaraso bashobora kandi kugira ibyuma byinshi. Gukuraho ibyuma byinshi ni ingenzi ku buzima bwawe.

Kugira ngo umubiri wawe ukureho ibyuma byinshi, ushobora gukenera gufata imiti yo kunywa, nka deferasirox (Exjade, Jadenu) cyangwa deferiprone (Ferriprox). Indi miti, deferoxamine (Desferal), itangwa n'urushinge.

Gusimbuza uturemangingo. Bita kandi gusimbuza umugufi w'amagufa, gusimbuza uturemangingo bishobora kuba amahitamo mu bihe bimwe na bimwe. Ku bana bafite thalassemia ikomeye, bishobora gukuraho ibyo gukenera amaraso buri gihe no gufata imiti yo kugenzura ibyuma byinshi.

Ubu buryo burimo kwakira amaraso afite uturemangingo dukomoka ku mutanga uhuye, akenshi umuvandimwe.

• Gusukwa amaraso kenshi. Ubwoko bukomeye bwa thalassemia bukunze gusaba gusukwa amaraso kenshi, bishobora kuba buri cyumweru cyangwa ibyumweru bike. Mu gihe, gusukwa amaraso bituma ibyuma byinshi biri mu maraso yawe, ibyo bishobora kwangiza umutima, umwijima n'izindi ngingo.

• Ubuvuzi bwo gukuraho ibyuma byinshi. Iyi ni yo kuvura kugira ngo ukureho ibyuma byinshi biri mu maraso yawe. Ibyuma bishobora kwiyongera kubera amaraso asanzwe ashyirwamo. Bamwe mu bantu bafite thalassemia badakunda gushyirwamo amaraso bashobora kandi kugira ibyuma byinshi. Gukuraho ibyuma byinshi ni ingenzi ku buzima bwawe.

  Kugira ngo umubiri wawe ukureho ibyuma byinshi, ushobora gukenera gufata imiti yo kunywa, nka deferasirox (Exjade, Jadenu) cyangwa deferiprone (Ferriprox). Indi miti, deferoxamine (Desferal), itangwa n'urushinge.

• Gusimbuza uturemangingo. Bita kandi gusimbuza umugufi w'amagufa, gusimbuza uturemangingo bishobora kuba amahitamo mu bihe bimwe na bimwe. Ku bana bafite thalassemia ikomeye, bishobora gukuraho ibyo gukenera amaraso buri gihe no gufata imiti yo kugenzura ibyuma byinshi.

  Ubu buryo burimo kwakira amaraso afite uturemangingo dukomoka ku mutanga uhuye, akenshi umuvandimwe.

Urashobora gufasha gucunga indwara yawe ya thalassemia ukurikiza gahunda yawe yo kuvurwa no gukoresha imyifatire myiza yo kubaho.

Funga indyo nzima. Kurya indyo nzima bishobora kugufasha kumva umeze neza no kongera imbaraga zawe. Muganga wawe ashobora kandi kugutegurira inyongeramusaruro ya aside folique kugira ngo umubiri wawe ukore uturemangingo tw'amaraso atukura.

Kugira ngo amagufa yawe akomeze kumera neza, menya neza ko indyo yawe irimo umunyu wa calcium na vitamine D uhagije. Baza muganga wawe umubare ukwiye kuri wowe niba ukeneye inyongeramusaruro.

Baza muganga wawe kubyerekeye gufata izindi nyongeramusaruro, nka aside folique. Ni vitamine B ifasha kubaka uturemangingo tw'amaraso atukura.

Kwirinda kwandura. Koga intoki kenshi kandi wirinda abarwayi. Ibi ni ingenzi cyane niba wakuweho umwijima.

Uzakeneye kandi inkingo ya grippe buri mwaka, kimwe n'inkingo zo kwirinda meningitis, pneumonia na hepatite B. Niba ugize umuriro cyangwa ibindi bimenyetso by'indwara, reba muganga wawe kugira ngo akuvure.

• Kwirinda umunyu wa fer w'umurengera. Keretse muganga wawe abikubwiye, ntugafate vitamine cyangwa izindi nyongeramusaruro zirimo umunyu wa fer.
• Funga indyo nzima. Kurya indyo nzima bishobora kugufasha kumva umeze neza no kongera imbaraga zawe. Muganga wawe ashobora kandi kugutegurira inyongeramusaruro ya aside folique kugira ngo umubiri wawe ukore uturemangingo tw'amaraso atukura.

Kugira ngo amagufa yawe akomeze kumera neza, menya neza ko indyo yawe irimo umunyu wa calcium na vitamine D uhagije. Baza muganga wawe umubare ukwiye kuri wowe niba ukeneye inyongeramusaruro.

Baza muganga wawe kubyerekeye gufata izindi nyongeramusaruro, nka aside folique. Ni vitamine B ifasha kubaka uturemangingo tw'amaraso atukura.

• Kwirinda kwandura. Koga intoki kenshi kandi wirinda abarwayi. Ibi ni ingenzi cyane niba wakuweho umwijima.

Uzakeneye kandi inkingo ya grippe buri mwaka, kimwe n'inkingo zo kwirinda meningitis, pneumonia na hepatite B. Niba ugize umuriro cyangwa ibindi bimenyetso by'indwara, reba muganga wawe kugira ngo akuvure.