Ushobora kuba warigeze kumva "anemia" cyangwa "anemia" si byo? Mu magambo make, ni igihe umubiri wacu udakora uturemangingo dutukura duhagije cyangwa uturemangingo dutukura dufite tudakora neza. Uturemangingo dutukura ni two dutwara umwuka wa ogisijeni mu mibiri yacu. Rero iyo turi muke, dushobora kumva tunaniwe kandi tunaniwe igihe cyose. Utwo turemangingo dutukura tukorerwa mu musokoro w'amagufwa, igice cyoroshye kandi gifite umuyoboro mu magufwa yacu. Diamond-Blackfan Anemia (DBA) ni ubwoko bwihariye bwa anemia ibaho iyo umusokoro w'amagufwa udashobora gukora uturemangingo dutukura duhagije.
Ni iki gitera indwara ya Diamond-Blackfan Anemia (DBA)?
Anemia ya Diamond-Blackfan, rimwe na rimwe yitwa "acquired pure red cell aplasia", ikunze gusuzumwa n'abaganga mbere y'uko umwana ageza ku mwaka umwe. Impamvu nyamukuru ibitera ni impinduka, cyangwa impinduka, mu turemangingo tw’umubiri wacu.
Wibuke ko rimwe na rimwe iyi ndwara ishobora kuragwa na nyina cyangwa se. Ariko si ko bigenda buri gihe. Ingirabuzimafatizo zimwe na zimwe z'abana nazo zishobora guhinduka nta mpamvu. Abana benshi bafite DBA bagira iyi ndwara bitewe n'impinduka nshya mu ngirabuzimafatizo. Kubwibyo, nk'ababyeyi, nta mpamvu yo guhangayikishwa nabyo bitari ngombwa. Nubwo habonetse impamvu yihariye mu ngirabuzimafatizo hafi kimwe cya kabiri cy'abarwayi ba DBA, kuri bamwe, hari impamvu yihariye itera iyi ndwara itaraboneka.
Ni ibihe bimenyetso bya DBA?
Abana bafite DBA bashobora kandi kugira ibimenyetso byinshi bisanzwe by’ubundi bwoko bw’amaraso adahagije. Ni ukuvuga,
- Umunaniro uhoraho
- Uruhu rwerurutse
- Kumva ufite intege nke
Uretse ibi bintu bisanzwe, bamwe mu bana bavukanye DBA bashobora kugira imiterere yihariye yo hanze ku maso no ku mibiri yabo. Reka turebe icyo ari cyo.
| Igice cy'umubiri | Ibiranga bigaragara |
|---|---|
| Umutwe | Kugira umutwe muto ugereranije n'usanzwe. |
| Isura | Intera iri hagati y'amaso n'izuru rirambuye yiyongera. |
| Amatwi | Amatwi abiri mato ashyirwa hasi ugereranije n'ibisanzwe. |
| Umusaya | Kugira umusaya muto wo hasi. |
| Ijosi | Ijosi rigufi, rifite uruziga. |
| Amatugu | Uduti duto tw'amaboko. |
| Amaboko | Ibikumwe bifite ishusho idasanzwe. |
| Umunwa | Kugira akanwa gafite umunwa upfutse cyangwa urimo kubura. |
Byongeye kandi, DBA ishobora gutera ibibazo by'impyiko , ubumuga bw'umutima , n'ibibazo by'amaso nka cataract na glaucoma . Abahungu bashobora kandi kugira ikibazo cyo kuvukana cyitwa hypospadias, ari na cyo gihe aho inkari zitari ku mpera y'igitsina cy'umugabo.
Ni gute wamenya neza iyi ndwara?
Muganga wawe ashobora gukora ibizamini byinshi kugira ngo amenye niba umwana wawe afite DBA. Abana bafite DBA bafite umubare muto w'uturemangingo dutukura mu maraso, ariko uturemangingo tw'umweru n'udupira tw'amaraso tuba dufite umubare usanzwe.
Igikuru ni ukudatinya iyo ubonye ibi bimenyetso, ahubwo ni ukubonana na muganga wujuje ibisabwa vuba bishoboka. Azagukorera ibizamini bikenewe kandi aguhe amakuru nyayo.
Ibi ni bimwe mu bipimo by'ingenzi byakozwe na muganga.
| Ikizamini | Ishaka iki? |
|---|---|
| Umubare w'amaraso yuzuye (CBC) | Ibintu byinshi bipimirwa mu maraso, urugero nk'umubare w'uturemangingo dutukura tw'amaraso, uturemangingo tw'amaraso twera, uduce duto tw'amaraso, hemoglobine itwara ogisijeni, n'ingano y'uturemangingo dutukura tw'amaraso (hematocrit) . |
| Umubare wa reticulocyte | Ibi bipima umubare w'uturemangingo dutukura tw'amaraso tudakuze, cyangwa dushya. Ibi bishobora kwerekana niba umwongo w'amagufwa urimo gukora uturemangingo dutukura neza. |
| Kugenzura urwego rwa eADA | Abantu bagera kuri 80% bafite DBA bafite urugero rwinshi rw'umusemburo witwa erythrocyte adenosine deaminase (eADA) . Iki nicyo iki kizamini gishaka. |
| Urugero rwa hemoglobine mu mwana uri mu nda | Ubu ni ubwoko bwa hemoglobine abana baba bafite mu nda. Igomba kugabanuka nyuma yo kuvuka. Ariko, abana bafite DBA bashobora gukomeza kugira urugero rwo hejuru uko bagenda bakura. |
| Gukoresha umwotsi w'amagufwa no gupima umubiri | Uturemangingo duke n'amazi bivanwa mu musokoro w'amagufwa hakoreshejwe urushinge hanyuma bigapimwa. Abana bafite DBA bafite uturemangingo duke cyane tw'amaraso atukura mu musokoro w'amagufwa yabo. |
| Ibipimo by'uturemangingo | Ibi bizamini by’uturemangingo dufitanye isano na DBA cyangwa izindi ndwara zo kubura amaraso zikomoka ku babyeyi. |
Ni izihe ngorane zindi zishobora guterwa na DBA?
Abantu bafite DBA bafite ibyago byinshi byo kurwara indwara zimwe na zimwe. Muri zo harimo kanseri y'amaraso n'umusemburo w'amagufwa (leukemia y'imitsi ikabije), kanseri y'amagufwa (osteosarcoma), n'izindi ndwara aho umusemburo w'amagufwa udashobora gukora uturemangingo tw'amaraso tuzima (syndrome ya myelodysplastic). Ariko ntugahangayike kuri ibi. Abaganga bahora babikurikirana, bityo ushobora gufata ingamba zikenewe mu buvuzi mu gihe gikwiye.
Ni ubuhe buryo bwo kuvura ibi?
Iki ni cyo gice cy'ingenzi kandi gihumuriza. Abana basanzwe bafite DBA bashobora kubaho igihe kirekire kandi bakagira ubuzima bwiza iyo bavuwe n'abaganga. Hari abana bakira burundu, bivuze ko ibimenyetso bishira igihe runaka.
Uburyo bubiri bw'ingenzi bwo kuvura bukoreshwa ni imiti ya corticosteroid n'iyo guterwa amaraso.
- Imiti ya Corticosteroid: Imiti nka `(Prednisone)` itera imbaraga umwongo w'amagufwa kandi ikawufasha gukora uturemangingo twinshi tw'amaraso dutukura.
- Gutera amaraso: Ubu ni uburyo bwiza niba imiti ya steroid idakora neza, cyangwa niba amaraso menshi agabanuka. Ibi bikubiyemo guha umwana amaraso cyangwa uturemangingo dutukura tw’amaraso tuvuye ku muntu muzima utanga amaraso.
- Gutera uturemangingo tw’umusemburo/uturemangingo tw’umura: Ubu ni bwo buryo bwonyine bwo kuvura DBA. Ariko, ni ikibazo gikomeye. Nanone, kubona umuterankunga ujyanye na we rimwe na rimwe bishobora kugorana.
Ni ngombwa kuganira na muganga wawe ku buryo bwose bwo kuvura, ibyiza n'ibibi byabwo, hanyuma ugahitamo icyo umwana wawe yakwitaho neza.
Ubutumwa bwo kujyana mu rugo
- Anemia ya Diamond-Blackfan (DBA) ni indwara idakunze kugaragara mu bana aho umwongo w'amagufwa udashobora gukora uturemangingo dutukura duhagije.
- Uretse ibimenyetso bisanzwe nko kunanirwa kenshi no kutagira uruhu, iyi ndwara ishobora no gutera ibimenyetso bimwe na bimwe byo hanze ku maso no ku mubiri.
- Umuganga ashobora gusuzuma iyi ndwara neza binyuze mu gupima amaraso no gusuzuma umwongo w'amagufwa.
- Uburyo bwo kuvura nk'imiti ya steroide no guterwa amaraso bushobora gufasha abana kubaho igihe kirekire kandi bafite ubuzima bwiza. Gutera umwongo w'amagufwa ni bwo buryo bwonyine bwo kuvura.
- Niba ufite amakenga make ko umwana wawe afite ibi bimenyetso, ntugatinye kandi uhite ubonana na muganga w'abana. Gusuzuma no kuvurwa byihuse ni ingenzi cyane.
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