Ese hari ikibazo mu maraso yawe? Reka twige ibijyanye na hemoglobinopathy mu buryo bworoshye!

Ese uhora wumva unaniwe kandi unaniwe? Wenda uruhu rwawe rurakeye gato? Cyangwa hari umuntu wo mu muryango wawe warwaye indwara y'amaraso? Icyo ngiye kukubwira ni ingenzi cyane kuri wewe. Uyu munsi tugiye kuvuga ku ndwara y'amaraso yitwa Hemoglobinopathy, ifite izina rigoye, ariko igaragara ku bantu benshi. Ntugahangayike, tuzabivugaho mu buryo bworoshye.

Hemoglobinopathy ni iki? Reka tubimenye neza!

Muri make, hemoglobinopathies ni itsinda ry'indwara zivukanwa zigira ingaruka kuri poroteyine iri mu maraso yacu yitwa hemoglobin. Noneho ushobora kuba wibaza icyo iyi hemoglobin ari cyo, sibyo?

Tekereza kuri ubu buryo: hemoglobine ni nk'intwari nto iri mu turemangingo dutukura tw'amaraso. Ni yo ikura umwuka wa ogisijeni mu bihaha byacu iyo duhumeka ikawukwirakwiza mu mibiri yacu yose. Ikora nk'umwuka wa ogisijeni. Rero iyo iyi hemoglobine idakozwe neza, cyangwa niba idakozwe bihagije, imibiri yacu ntibona umwuka wa ogisijeni uhagije. Ni bwo ibibazo bitangira.

Iyi ndwara iravukanwa, bivuze ko iterwa n'impinduka mu ngirabuzimafatizo dukomoka ku babyeyi bacu. Abantu babarirwa muri za miriyoni ku isi barwaye iyi ndwara. Mu by'ukuri, ni bwo bwoko bukunze kugaragara bw'indwara z'amaraso zivukanwa. Abashakashatsi bavumbuye ubwoko burenga 600 bwa hemoglobinopathies!

Iyo imibiri yacu ikora hemoglobin idasanzwe, cyangwa ikaba idahagije, ibimenyetso nko kubabara umubiri, umunaniro, no kwangirika kw'ingingo zitandukanye bishobora kubaho. Niyo mpamvu ari ngombwa cyane kuyimenya hakiri kare. Niyo mpamvu abaganga bapima abana bafite hemoglobinopathy bakimara kuvuka.

Icy'ingenzi ni uko Hemoglobinopathy atari indwara ikira burundu. Ariko, iyo tuvuwe neza, dushobora kugenzura ibimenyetso no gukumira ingorane.

Ni ubuhe bwoko bwa hemoglobinopathies buriho?

Nkuko twabivuze mbere, hari ubwoko amagana bw'ubu bwoko. Ubu bwoko bukunze kwitwa amazina hakoreshejwe inyuguti z'Icyongereza. Inyuguti zerekeza ku moko atandukanye ya poroteyine ya hemoglobine n'uburyo abashakashatsi bayivumbuye. Ibi bifasha abaganga gusobanukirwa itandukaniro nyaryo ry'uturemangingo.

Dore bumwe mu bwoko bukunze kugaragara bwa hemoglobinopathy:

• Indwara ya Hemoglobini C: Aha niho hemoglobin isanzwe isimbuzwa ubwoko bwitwa hemoglobin C.
• Indwara ya Hemoglobini E: Aha, hemoglobin isanzwe isimburwa na hemoglobin E.
• Indwara ya Hemoglobini D: Aha, hemoglobin isanzwe isimburwa na hemoglobini D.
• Indwara ya Hemoglobin SC:Iyi ndwara ibaho iyo uvukanye gene imwe ya sickle cell na gene imwe ya hemoglobin C.
• Indwara ya Hemoglobin SD: Aha, gene imwe ya sickle cell na gene imwe ya hemoglobin D birandurwa.
• Indwara ya Hemoglobin SE: Aha, gene imwe ya sickle cell na gene imwe ya hemoglobin E biragwa.
• Indwara ya Sickle cell: Muri iki kibazo, uturemangingo dutukura tw'amaraso duhinduka nk'umuhoro. Ibi bituma tudashobora kugenda byoroshye mu mitsi y'amaraso kandi bishobora gutuma tuyifunga.
• Thalassemia: Muri iki kibazo, umubiri wawe ntukora hemoglobin ihagije.

Ibi bishobora kumvikana nk'ibigoye gato, ariko muganga ashobora kubigusobanurira byinshi.

Ni ibihe bimenyetso by'ibi? Reba niba nawe ufite ibi...

Ibimenyetso bya hemoglobinopathy bishobora gutandukana bitewe n'umuntu ku giti cye, ariko hari ibimenyetso bimwe na bimwe bikunze kugaragara:

• Amaboko n'ibirenge bikonje
• Inkari zijimye (zigenda zijima)
• Umunaniro uhoraho
• Kudindira mu mikurire y'abana
• Ibara ry'umuhondo ku ruhu no ku maso (Jaundice)
• Uruhu rwerurutse
• Kugorwa no guhumeka, guhumeka
• Gusinzira cyane kuruta uko bisanzwe
• Kubyimba kw'ingingo

Abana bafite indwara ikomeye ya hemoglobinopathy bashobora kugaragaza ibimenyetso mu gihe cyo kuvuka. Hari igihe ibimenyetso bigaragara mu bwana. Ku bantu bakuru, ibi bimenyetso bishobora kwiyongera cyane mu gihe indwara ikomeza kwiyongera (nk'indwara ya sickle cell crisis).

Kuki iyi hemoglobinopathy ibaho?

Impamvu nyamukuru ibitera ni uko hari ihinduka rya gene rigira ingaruka kuri hemoglobin yawe. Ushobora kubona iri hinduka rya gene kuri nyoko wawe, so wawe, cyangwa bombi. Ibi bivuze ko iki atari ikintu dushobora kugenzura, ni ikintu gikomoka ku murage.

Ni nde ufite amahirwe menshi yo kurwara ibi? (Ibintu bishobora gutera ibyago)

Hari abantu bashobora kurwara iyi ndwara ya hemoglobinopathy. Reka turebe abo ari bo:

• Niba inkomoko yawe ari iy'Abanyafurika, Mediterane, Aziya y'Amajyepfo y'Uburasirazuba, cyangwa Aziya y'Iburengerazuba. (Ibi bintu biboneka no muri Sri Lanka)
• Niba nyoko, so, cyangwa umuvandimwe wawe afite ikibazo cyo kugabanuka k'amaraso mu mubiri.
• Niba utuye mu gace aho gupima hemoglobinopathy y'abana bato bidakorwa buri gihe.

Niba ufite hemoglobinopathy, hari amahirwe ko n'umwana wawe ashobora kurwara iyi ndwara. Kubwibyo, ni ngombwa cyane gushaka inama kwa muganga mbere yo gushinga umuryango.

Ni izihe ngorane ibi bishobora gutera?

Iyo hemoglobinopathy idacunzwe neza, hashobora kubaho ingorane zitandukanye. Zimwe muri zo ni:

• Anemia: Hari ubwoko bumwe bwa hemoglobinopathy bushobora gutera anemia, ibyo bikaba byatera kugabanuka k'uturemangingo dutukura tw'amaraso. Ibi bishobora gutuma umuntu agira umunaniro mwinshi n'intege nke.
• Kwandura indwara zikunze kugaragara: Hemoglobinopathy ishobora gutuma ubudahangarwa bw'umubiri bugabanuka , ibyo bikaba byongera ibyago byo kurwara no kwandura.
• Kwangirika kw'ingingo: Hemoglobinopathy itera kugabanuka k'urugero rwa ogisijeni mu maraso. Iyo amaraso akungahaye kuri ogisijeni adatanzwe neza mu gihe runaka, ingingo zacu n'ingingo zacu bishobora kwangirika.
• Ububabare: Mu bwoko bumwe na bumwe bwa hemoglobinopathies, nk'indwara ya sickle cell, amaraso ashobora kuzura mu mitsi y'amaraso akayifunga. Ibi bishobora gutera ububabare bukomeye no kugabanuka kw'amaraso atembera.

Ni gute wasuzuma iyi ndwara neza? (Isuzuma)

Abaganga bakora ibizamini byinshi kugira ngo barebe neza niba ufite hemoglobinopathy.

• Umubare w'amaraso yuzuye (CBC): Ubusanzwe iki ni cyo gipimo cya mbere cy'amaraso gikorwa. Kirashobora kukubwira ubwoko bw'uturemangingo mu maraso yawe, ni ukuvuga umubare w'uturemangingo muri buri bwoko bw'uturemangingo ufite.
• Gupima imiterere y'uturemangingo: Iki kizamini gishobora kugaragaza neza impinduka zikomoka ku miterere y'uturemangingo.
• Hemoglobine Electrophoresis: Iki kizamini gitandukanya molekile za hemoglobin n'icyitegererezo cy'amaraso yawe kandi kigasuzuma ibitagenda neza.
• Inyigo ku byuma: Iki kizamini gishobora gukorwa kugira ngo hamenyekane niba ufite ikibazo cyo kubura icyuma.
• Gupima abana bavutse: Mu bihugu byinshi nka Kanada na Amerika, abana bavutse bapimwa hemoglobinopathy. Ibitaro bimwe na bimwe byo muri Sri Lanka nabyo bifite iki kigo.
• Gupima umwana utwite: Iki kizamini gishobora gukoreshwa mu kumenya niba umwana utwite afite hemoglobinopathy mu gihe atwite.

Ni ubuhe buryo bwo kuvura?

Hari uburyo butandukanye bwo kuvura indwara ya hemoglobinopathy, ariko ubu buryo buratandukanye bitewe n'ubwoko n'uburemere bw'indwara.

• Guterwa amaraso: Hari indwara zimwe na zimwe, nka thalassemia na sickle cell disease, zigira ingaruka ku rugero rwa hemoglobine mu maraso. Guterwa amaraso bishobora kuba ngombwa kugira ngo hemoglobine ikomeze kuba nziza.
• Ibinini bya aside folike: Ibi bishobora gufasha kongera umusaruro w'uturemangingo dutukura tw'amaraso.
• Uburyo bwo kuvura imiterere y'uturemangingo (gene):Ubu ni uburyo bushya bwo kuvura. Abahanga mu bya siyansi bakura uturemangingo twangiritse mu mubiri wawe, bakadusana bakoresheje uburyo bwihariye, hanyuma bakatwongera kutwongera mu mubiri wawe. Ni nko kongera kwandika amabwiriza ari mu ngirabuzimafatizo zawe.
• Ubuvuzi bwo gusiga icyuma gishyushye: Niba ufite icyuma gishyushye cyane mu mubiri wawe, ubu buvuzi bushobora gukuramo icyuma gishyushye. Uyu muti utangwa haba mu kanwa cyangwa mu inshinge.
• Uburyo bwo kuvura umwuka wa ogisijeni: Muganga wawe ashobora kukugira inama yo kuvura umwuka wa ogisijeni hamwe n'ubundi buryo bwo kuvura. Intego y'ibi ni ukongera urugero rwa ogisijeni mu maraso yawe no kugabanya ububabare.
• Gutera uturemangingo tw’amaraso: Ibi bikubiyemo gusimbuza uturemangingo tw’amaraso dutukura tudasanzwe uturemangingo tw’amaraso dutukura dufite ubuzima bwiza. Ariko, ibi ntibikunze kubaho cyane, kuko bigoye kubona utanga utwo dutanga. Binafite ibyago byo kurwara indwara ya graft-versus-host (GvHD) .

Wibuke ko bitewe n'ubwoko bwa hemoglobinopathie ufite, ushobora kudakenera ubuvuzi na gato. Rero ni byiza kuvugana na muganga wawe ukamubaza ikikubereye.

Nzumva meze neza nyuma y'igihe kingana iki?

Biterwa cyane n'ubwoko bwa hemoglobinopathy ufite n'ubukana bwayo. Abantu benshi batangira kumva bameze neza mu byumweru cyangwa amezi make uhereye igihe batangiriye kuvurwa.

Hemoglobinopathy ni indwara ibaho ubuzima bwose, bityo uzakenera ibizamini bya muganga buri gihe no gukurikiranwa. Muganga wawe azagufasha kwihanganira ibimenyetso byawe.

Ejo hazaza hazaba hameze hate ku babana n'iyi ndwara?

Iyo uvuwe neza, ahazaza hawe hashobora kuba heza. Abantu barenga 90% bafite uburwayi bwa hemoglobinopathy bararokoka kugeza bakuze.

Ariko, iyo bitavuwe, ubwoko bwinshi bwa hemoglobinopathies bushobora gutera urupfu mu myaka mike ya mbere y'ubuzima. Kubwibyo, gusuzuma no kuvura hakiri kare ni bwo buryo bwiza bwo kwirinda ingorane zikomeye.

Ese ibi ntibishobora kwirindwa?

Ikibabaje ni uko atari byo. Kubera ko hemoglobinopathy ari ikintu umuntu avukana, nta buryo bwo kuyirinda. Ariko, dushobora guhangana n'ibimenyetso turamutse tuvuwe neza.

Nitwara nte?

Kubaho urwaye hemoglobinopathy bishobora kugorana, ariko iyo witayeho neza, ushobora kugabanya ibyago byo kubabara n'izindi ngaruka mbi.

Dore inama rusange zishobora kugufasha:

• Nywa amazi menshi. Gerageza kunywa nibura litiro 2-3 z'amazi ku munsi.
• Gira imyitozo ngororamubiri, ariko ntukabye. Tega amatwi umubiri wawe. Niba wumva unaniwe, ruhuka.
• Kurya ibiryo bikungahaye kuri feri, vitamine, n'imyunyungugu. Shyiramo imboga, imbuto, imboga, inyama n'amafi mu ifunguro ryawe.
• Genda ku muhangayiko wawe. Koresha uburyo bwo gutekereza cyane, yoga, cyangwa ubundi buryo bwo kwitonda ukunda.
• Karaba intoki zawe kenshi. Ibi bigufasha kwirinda indwara zandura.

Ni ryari ngomba kujya kwa muganga?

Niba ufite ibimenyetso nko kunanirwa cyane, kugorwa no guhumeka, cyangwa uruhu rwerurutse, menya neza ko wagiye kwa muganga ukamubwira ibyawe.

Niba waramaze kugaragaraho indwara ya hemoglobinopathy, hita ubonana na muganga wawe niba ibimenyetso byawe bigarutse cyangwa bikarushaho kwiyongera. Ashobora guhindura uburyo bwo kwivuza.

Ni ibihe bibazo ugomba kubaza muganga?

Niba wowe cyangwa umwana wawe mufite hemoglobinopathy, ni byiza kubaza muganga wawe ibi bibazo:

• Ni ubuhe bwoko bwa hemoglobinopathy mfite/umwana wanjye?
• Ni ubuhe bwoko bw'ubuvuzi usaba?
• Ese nzakenera kubonana n'abandi bahanga kugira ngo bamvure?
• Ese ngomba guhindura indyo yanjye cyangwa ingeso zanjye zo gukora siporo?
• Ni iki gishobora gutuma abana banjye bagira iyi ndwara?
• Ese hari andi makuru ufite kuri ibi? (urugero: ibitabo, imbuga za interineti)

Ni ryari ugomba kujya mu Kigo cyita ku Buvuzi bw’Ingoboka (ETU) ?

Niba ufite kimwe muri ibi bimenyetso bikurikira, hamagara 911 (1990 muri Sri Lanka) cyangwa ujye mu cyumba cy’ubutabazi bw’ibanze kiri hafi yawe ako kanya:

• Kubabara mu gatuza
• Kuzungera
• Umuriro uri hejuru ya dogere selisiyusi 39.4 (dogere selisiyusi 39.4)
• Ububabare bukomeye budashira nubwo wafashe imiti
• Ibimenyetso by'indwara yo mu bwonko, urugero, gutakaza ubwenge butunguranye, kugorwa no kuvuga.

Ni gute hemoglobinopathy igira ingaruka ku ndwara ya A1C yanjye?

Hemoglobinopathy ishobora gutuma ibisubizo byawe bya A1C bitaba ari byo. Bitewe n'ubwoko bw'uturemangingo twawe, ishobora kugaragaza agaciro kari hasi cyangwa kari hejuru y'uko ufite mu by'ukuri.

Niba ufite ikibazo cyo kugabanya amaraso mu mubiri (hemoglobinopathy), muganga wawe ashobora kukugira inama yo gupima indwara ishobora kugabanya iki kibazo. Iyi A1C ni ingenzi cyane ku bantu barwaye diyabete, bityo ntukibagirwe no kuganira na muganga wawe kuri ibi.

Amaherezo, ibintu by'ingenzi cyane ugomba kwibuka!

Ni ibisanzwe kumva ufite ubwoba no guhangayika iyo umenye ko wowe cyangwa umwana wawe afite indwara y'amaraso yamaze ubuzima bwe bwose. Ibibazo nka "Ni gute hemoglobinopathy izagira ingaruka ku buzima bwanjye?", "Ese nzahora mu bubabare?", "Iyi ndwara izagira ingaruka ku mwana wanjye ite?" bishobora kuvuka mu mutwe wawe.

Ariko inkuru nziza ni uko iyo uvuwe neza kandi ukagenzura ibimenyetso, ushobora kubaho neza uko bishoboka kose.Ikintu cyiza wakora ni ukuganira na muganga wawe. Ntugatinde. Gusuzuma indwara hakiri kare no kuyivura ni byo bizatuma ugira ubuzima bwiza kandi burambye.

Witinya, ntabwo uri wenyine. Abaganga, abaforomo n'umuryango wawe bazagufasha muri uru rugendo. Gira ubutwari!

Hemoglobinopathy , indwara z'amaraso, indwara z'uruhererekane, hemoglobine, kubura amaraso, indwara y'uturemangingo tw'umusemburo, thalassemia