Ese umwana wawe ahora afite ibara ry'uruhu kandi ananiwe? Ese byaba ari Thalassemia?

Ese umwana wawe asa n'unaniwe igihe cyose? Ese ntiyiruka akina nk'abandi bana? Ese afite ubushake buke bwo kurya? Ese yigeze yumva afite uruhu? Ni ibisanzwe ko umubyeyi cyangwa se yumva afite ubwoba bwinshi iyo abonye ibintu nk'ibi. Nubwo ibi bimenyetso akenshi bishobora guterwa n'indwara zisanzwe, rimwe na rimwe hashobora kubaho ikibazo cy'uburwayi inyuma yabyo, nka Thalassemia. None rero uyu munsi, reka tuganire kuri Thalassemia icyo ari cyo, uko igira ingaruka ku mubiri wacu, n'uburyo bwo kuyivura.

Thalassemia ni iki mu by'ukuri?

Muri make, thalassemia ni indwara umuntu avukana ikagira ingaruka ku maraso yacu . Si indwara yandura. Ibyo bivuze ko idakwirakwira iva ku muntu umwe ijya ku wundi nk'ibicurane. Ni ikintu dukura ku babyeyi bacu binyuze mu turemangingo twacu.

Kugira ngo tubisobanukirwe neza, reka tubanze tuvuge gato ku turemangingo dutukura tw’amaraso mu maraso yacu. Tekereza kuri utu turemangingo dutukura tw’amaraso nk’isosiyete itwara umwuka wa ogisijeni mu mibiri yacu. Inzira y’iyi serivisi, ni ukuvuga igare ritwara umwuka wa ogisijeni, yitwa hemoglobin . Hemoglobine ni poroteyine idasanzwe iboneka mu turemangingo dutukura tw’amaraso. Iyi ni yo itwara umwuka wa ogisijeni mu bihaha byacu ikawukwirakwiza muri buri turemangingo two mu mubiri.

Umuntu urwaye thalassemia ntashobora gukora iyi poroteyine yitwa hemoglobine ihagije. Kimwe n'igihe imodoka yubatswe, iyo bimwe mu bice bya ngombwa bibuze cyangwa hakoreshejwe ibice bike, imodoka ntikora neza. Ibi bituma umubare w'uturemangingo dutukura tw'amaraso tuzima mu mubiri ugabanuka. Ibi tubyita indwara yo kubura amaraso mu turemangingo dutukura.

Rero iyo uturemangingo mu mubiri tutabonye ogisijeni ikwiye, ntabwo dushobora gukora ingufu dukeneye. Niyo mpamvu abarwayi ba thalassemia bagira ibimenyetso bitandukanye.

Ni nde uri mu kaga gakomeye ko kurwara iyi ndwara?

Impinduka mu miterere y’uturemangingo zitera ibi zitekerezwa ko zatangiye kugaragara mu bantu nk'uburyo bwo kurinda malariya. Kubwibyo, abantu bafite isano mu miterere y’uturemangingo n’uturere tugaragaramo malariya, nka Afurika, Uburayi bw’amajyepfo, n’ibihugu byo muri Aziya y’Iburengerazuba, Amajyepfo n’Iburasirazuba, bari mu kaga gakomeye ko kurwara thalassemia. Kubera ko Sri Lanka nayo ari igihugu cyo muri Aziya y’Amajyepfo, hari abarwara thalassemia n’abarwayi bayo mu baturage bacu.

Ni iki gitera thalassemia? Reka turebere hamwe.

Iyo "gariyamogini ya ogisijeni" yitwa hemoglobin navuze mbere igizwe n'imiyoboro ine ya poroteyine. Ibiri muri yo yitwa imiyoboro ya alpha globin , indi ibiri yitwa imiyoboro ya beta globin .

Duhabwa "amabwiriza" cyangwa "kode" yo gukora izi nganda duhereye ku ngirabuzimafatizo twarazwe n'ababyeyi bacu. Tekereza izi nganda nk'uburyo bwo guteka ibiryo. Iyo hari inenge cyangwa ikosa muri resept, ibiryo ntibishobora gutegurwa neza. Mu buryo nk'ubwo, niba hari inenge cyangwa ibura muri izi nganda, uruhererekane rwa alpha cyangwa beta globin ntiruzaba rwakozwe neza. Icyo gihe ni bwo habayeho indwara yitwa thalassemia.

• Udukingirizo twa Alpha globin: Ibi bisaba gene 4 kugira ngo bikorwe. Zibiri zikomoka kuri nyina n'izindi ebyiri zikomoka kuri se.
• Uduce twa Beta globin: Ibi bisaba gene ebyiri kugira ngo hakorwe. Imwe ikomoka kuri nyina n'indi ikomoka kuri se.

Ubwoko bwa thalassemia uhura nabwo buterwa n'ubwoko bw'utu duce twa alpha cyangwa beta dufite inenge ya gene. Uburemere bw'indwara buterwa n'umubare w'uturemangingo dufite inenge.

Ni ubuhe bwoko bw'ingenzi bwa thalassemia?

Thalassemia igabanyijemo ibice byinshi by'ingenzi bitewe n'uburemere bw'indwara. Ni ukuvuga thalassemia trait, thalassemia minor, thalassemia intermedia, na thalassemia major . Mu gihe ufite iyi ndwara, ushobora kutagira ibimenyetso. Cyangwa ushobora kugira amaraso make cyane. Thalassemia major ni yo ndwara ikomeye cyane isaba kuvurwa.

Hari ubwoko bubiri bw'ingenzi, bitewe n'uko inenge ya genetiki iri mu miyoboro ya alpha cyangwa imiyoboro ya beta.

1. Alpha Thalassemia

Iyi ndwara ibaho iyo hari inenge muri gene imwe cyangwa nyinshi muri 4 zikora urunigi rwa alpha globin. Ubukana bw'ibimenyetso biterwa n'umubare w'uturemangingo dufite inenge. Reka tubirebe mu buryo bworoshye kugira ngo tubisobanukirwe.

2. Beta Thalassemia

Iyi ndwara ibaho iyo hari inenge muri imwe cyangwa zombi muri gene zikora beta globin chains (imwe ikomoka kuri nyina, indi ikomoka kuri se).

• Ingirabuzimafatizo imwe ifite inenge: Iyi ndwara yitwa beta thalassemia nto cyangwa carrier state. Ibimenyetso ni bike cyane.
• Utunyangingo tubiri dufite inenge: Ibimenyetso bishobora kuva ku rugero ruri hagati kugeza ku rugero rukomeye.
• Indwara yo hagati yitwa Thalassemia intermedia .
• Ubwoko bubi cyane bwitwa beta thalassemia major cyangwa Cooley's anemia . Aba bantu bakeneye kuvurwa buri gihe.

Ni ibihe bimenyetso bya thalassemia?

Ibimenyetso ubona biterwa gusa n'ubwoko bwa thalassemia ufite n'ubukana bwayo.

Nta bimenyetso cyangwa ibimenyetso byoroheje cyane

Niba ubuze imwe muri genes enye za alpha, birashoboka ko nta bimenyetso uzagira. Niba genes ebyiri za alpha cyangwa gene imwe ya beta ifite inenge, ushobora kutagira ibimenyetso na gato. Cyangwa ushobora kugira ibimenyetso byoroheje byo kubura amaraso, nko kumva unaniwe igihe cyose.

Ibimenyetso biri hagati (Thalassemia Intermedia)

Aba bantu bashobora kugira ibindi bimenyetso usibye kubura amaraso mu mubiri.

• Kunanirwa gukura: Uburebure n'ibiro by'umwana ntibiyongera ukurikije imyaka ye.
• Gutinda mu bugimbi.
• Ibitagenda neza mu magufwa:Indwara nka osteoporosis.
• Udusimba twagutse: Udusimba ni urugingo ruherereye ibumoso bw'inda yacu rufasha kurwanya indwara zandura.

Ibimenyetso bikomeye (Thalassemia Major)

Ibimenyetso bikomeye bigaragara mu ndwara nka ubusembwa butatu bwa alpha gene (indwara ya Hemoglobin H) na beta thalassemia major (anemia ya Cooley). Ibi bimenyetso akenshi bitangira kugaragara umwana atarageza ku myaka ibiri .

Uretse ibimenyetso byavuzwe haruguru, ushobora kubona ibi bikurikira:

• Ibiryo nta buryohe bwabyo.
• Uruhu rwerurutse cyangwa umuhondo (jaundice).
• Inkari zijimye (zifite ibara ry'icyayi).
• Utumenyero tw'amagufwa yo mu maso (biterwa no kwiyongera cyane kw'amagufwa yo mu gihanga).

Ni gute wasuzuma iyi ndwara?

Thalassemia iri hagati kandi ikomeye ikunze kugaragara mu bwana, kuko ibimenyetso bitangira kugaragara mu myaka ibiri ya mbere y'ubuzima bw'umwana. Muganga wawe ashobora gutegeka ko hapimwa amaraso atandukanye kugira ngo yemeze ko arwaye.

• Umubare wuzuye w'amaraso (CBC): Ibi bipima ingano ya hemoglobin mu maraso, umubare w'uturemangingo dutukura tw'amaraso, n'ingano yatwo. Abantu barwaye thalassemia bafite uturemangingo dutukura duke kandi hemoglobine nke. Uturemangingo dutukura tw'amaraso na two dushobora kuba duto ugereranije n'ibisanzwe.
• Umubare wa reticulocyte: Ibi bipima umubare w'uturemangingo dushya tw'amaraso dutukura. Ibi bishobora kuguha igitekerezo cy'uko umwongo wawe w'amagufwa utanga uturemangingo dutukura duhagije.
• Inyigo ku byuma: Iki kizamini gifasha kumenya neza niba amaraso yawe aterwa no kubura icyuma cyangwa thalassemia.
• Hemoglobin electrophoresis: Iki ni ikizamini cy'ingenzi cyane mu gusuzuma beta thalassemia.
• Gupima imiterere y'uturemangingo: Iki kizamini gikoreshwa mu gusuzuma alpha thalassemia.

Ni ubuhe buryo bwo kuvura thalassemia?

Uburyo busanzwe bwo kuvura indwara zikomeye nka thalassemia major ni ugutera amaraso no gukuramo icyuma.

• Gutera Amaraso: Muri make, iyi ni ugutera amaraso hanze. Amaraso arimo uturemangingo dutukura twiza ashyirwa mu mubiri binyuze mu mutsi. Ibi bigarura uturemangingo dutukura twiza n'urugero rwa hemoglobine. Mu ndwara zikomeye za thalassemia (urugero: beta thalassemia major), guterwa amaraso bishobora kuba ngombwa buri gihe, nko buri byumweru 2-4 .
• Uburyo bwo kuvura indwara ya “fer Chelation”:Imwe mu ngaruka mbi zikomeye zo gutanga amaraso kenshi ni ukwiyongera gukabije k'ubutare mu mubiri. Ibi tubyita ubwinshi bw'ubutare . Ubu butare bw'inyongera bushobora kwirundanya mu ngingo z'ingenzi nk'umutima wacu n'umwijima bikabyangiza. Kubwibyo, abantu bahabwa amaraso kenshi bahabwa imiti (ibinini cyangwa inshinge) ikuraho ubu butare bwinyongera mu mubiri.
• Inyongeramusaruro za aside folike: aside folike itangwa kugira ngo ifashe umubiri gukora uturemangingo tw’amaraso tuzima.
• Gutera uturemangingo tw’amagufwa n’uturemangingo tw’ingirabuzimafatizo: Ubu ni bwo buryo bwonyine bwo kuvura thalassemia burundu . Ariko, kugira ngo ibi bishoboke, umurwayi akeneye umuterankunga muzima uhuye neza. Akenshi, ni umuvandimwe cyangwa mushiki we. Ubu ni uburyo bwo kuvura bufite akaga kandi bugoye.
• Luspatercept: Uru ni urukingo rutangwa buri byumweru bitatu. Rukora mu gufasha umubiri gukora uturemangingo twinshi tw'amaraso dutukura.

Ubuzima bw'iyi ndwara bumeze bute? Ese ishobora kwirindwa?

Niba ufite thalassemia ntoya, ushobora kwitega kubaho ubuzima busanzwe. Yaba indwara yawe iri hagati cyangwa ikomeye, niba ukurikije gahunda yagenwe yo kuvura (guterwa amaraso no gukuramo icyuma) neza, ufite amahirwe menshi yo kubaho igihe kirekire.

Iyi ndwara ni iy’uturemangingo, bityo ntabwo dushobora kuyirinda. Ariko, gupima uturemangingo bishobora kugufasha kumenya niba wowe cyangwa umukunzi wawe mufite gene ya thalassemia. Kumenya aya makuru ni ingenzi cyane ku bashakanye bateganya kubyara. Vugana na muganga wawe kugira ngo akugire inama zirambuye kuri ibi.

Mu by’ukuri, thalassemia ni indwara ishobora gukemuka. Ubwoko bw’ubuvuzi ukeneye n’inshuro uzakenera bizaterwa n’uburemere bw’indwara yawe. Ni ngombwa kugirana ikiganiro na muganga wawe ku byerekeye indwara yawe n’uburyo uzayitabwaho mu gihe kirekire.