Ese uruhu rwawe, umusatsi wawe n'amaso yawe bifite umucyo udasanzwe? Ese byaba biterwa n'indwara ya Oculocutaneous Albinism (OCA)?

Ese wigeze ubona abantu bafite uruhu rwiza cyane n'umusatsi mwiza, rimwe na rimwe ndetse n'umweru? Ndetse n'amaso yabo arabagirana, nk'umuntu ukomoka mu kindi gihugu. Wenda umwe mu bagize umuryango wawe, inshuti, cyangwa umwana wawe afite ibi bintu. Mu buvuzi, ibi tubyita Oculocutaneous Albinism (OCA). Ntutinye, nubwo izina ryaba rinini gato. Iyi ni indwara idakunze kugaragara, ni ukuvuga idakunze kugaragara cyane, iterwa n'uturemangingo. Uyu munsi, tuzayivugaho mu buryo bworoshye cyane, kugira ngo ubyumve.

Noneho ugomba kuba wibaza icyo ubu bwoko bwa albinism (OCA) ari cyo n'impamvu bubaho, sibyo? Mu magambo make, hari ikintu mu mubiri wacu giha uruhu rwacu, umusatsi, n'amaso ibara, kandi cyitwa melanin. Ni nk'irangi. Iyi melanin ni yo ituma uruhu rwacu, umusatsi, n'amaso yacu ibara ridasanzwe. Rero, ikiba ku bantu bafite albinism ni uko imibiri yabo idashobora gukora iyi melanin neza cyangwa kuyikwirakwiza mu mibiri yabo yose. Tekereza, iyo irangi rigabanutse gato, riba ryoroheje. Niyo mpamvu uruhu rwabo, umusatsi, n'amaso yabo biba byoroshye cyane kurusha uko byari byitezwe. Uku kugabanuka kwa melanin ntikugira ingaruka gusa ku isura, ahubwo iyi melanin nayo ni ingenzi kugira ngo amaso yacu akore neza.

Iri hinduka ry'isura rishobora gutera isoni bamwe, kandi ni ibisanzwe kumva ufite isoni no guhangayikishwa no kugaragara mu buryo butandukanye n'ubw'abandi muri sosiyete. Nanone, ingaruka ku maso zishobora gutuma bigorana gukora imirimo ya buri munsi. Bishobora kuba bibi cyane. Ariko, ikintu cyiza ni uko hari uburyo bwo kuvura bushobora gufasha kugabanya ingaruka ku maso muri iki kibazo.

Wamenya ute ko ufite albino (OCA)? Ni ibihe bimenyetso?

Uretse ibimenyetso ushobora kubona muri iyi ndwara ya albino (OCA), hari n'ibimenyetso muganga wenyine ashobora kubona binyuze mu bipimo byihariye. Reka turebe ibyo ari byo.

Impinduka zigaragara ku ruhu no ku musatsi

Iki ni cyo kimenyetso gikunze kugaragara kandi cyoroshye kubona cy’ubuswa bw’ubwonko (OCA).

• Impinduka mu musatsi: Abantu bafite albino (OCA) bashobora kugira umusatsi wera cyangwa ibara ryoroheje cyane ry'umuhondo/umuhondo. Ibi bikunze kugaragara cyane ku bana bato. Ariko, uko bagenda bakura, nko mu bwana cyangwa mu bwangavu, umusatsi wabo ushobora gutangira kugira ibara runaka. Ingofero, amaso, n'ubundi bwoya bw'umubiri nabyo bishobora kuba umweru cyangwa byoroshye.
• Impinduka z'uruhu: Bitewe n'ubwoko bwa albino (OCA) ufite, uruhu rwawe rushobora kuba rwerurutse cyane. Hari abantu bashobora kuba boroheje cyane ku buryo rushobora kugaragara nk'urumuri, bivuze ko uruhu rushobora kuba ruto cyane kandi rugaragara. Abandi bashobora kuba badasa n'urubara rw'uruhu bakiri abana, ariko bashobora kugira impinduka nto mu ibara ry'uruhu uko bagenda bakura.

Ibimenyetso n'ububabare bugaragara mu maso

Albinism (OCA) ishobora kandi guteza impinduka zigaragara cyane mu ibara ry'amaso.

• Niba ufite albinism (OCA), imirasire y'amaso yawe ishobora kuba ifite ibara ryoroheje cyane ry'ubururu/imvi yoroheje. Hari igihe, iyo urumuri rukugeze ku maso, imirasire ishobora kugaragara nk'umutuku cyangwa ibara ry'umutuku. Iri bara rishobora no guhinduka mu buzima bwawe bwose. Ariko, ubwoko bumwe na bumwe bw'albinism (OCA) bushobora gutera amaso y'umukara.

Izindi ngorane z'amaso ushobora guhura nazo zirimo:

• Ibibazo byo kutabona: Kutabona neza, kubona ibintu bibiri, cyangwa kutabona neza.
• Gutinya foto: Ibi bivuze ko bigoye gukomeza gufungura amaso yawe kugira ngo utabona urumuri rw'izuba cyangwa amatara yaka, maze amaso yawe agahinduka ubururu.
• Impinduka mu buryo amaso yombi akora hamwe: Indwara nka strabismus, aho amaso aterekana icyerekezo kimwe, n'ingorane zo guhuza ibyo amaso yombi abona mu ishusho imwe (kunanirwa kureba neza).
• Ingendo z'amaso zihuta kandi zitagenzurwa (Nystagmus): Ibi bishobora kubangamira cyane.
• Kubona nabi bitewe n'impinduka mu ishusho y'ijisho (Amakosa yo gukosora imiterere y'ijisho): Kimwe n'aho indorerwamo zikenewe.

Icyo muganga abona mu gihe cyo gusuzuma amaso

Iyo ugiye kwa muganga w'amaso, hari ibindi bimenyetso azareba mu gihe cyo kumusuzuma:

• Impeta y'umukara iri mu jisho ryawe (iris) ni nto cyane ku buryo ushobora kubona urumuri runyuramo iyo usuzumye amaso yawe.
• Hashobora kubaho impinduka mu miterere ya retina yawe, zishobora kugira ingaruka ku buryo ijisho ryawe rikora.
• Hari amahirwe menshi yo guhinduka mu miterere y'umutsi w'amaso, uhuza amaso n'ubwonko. Ibi bishobora kugira ingaruka ku buryo ubwonko bukora ibyo ubona n'uko ubona isi.

Ibindi bimenyetso bishoboka

Amoko amwe y’ubuswa bw’ubwonko (OCA), cyangwa izindi ndwara zibutera, bishobora gutera izindi ngaruka n’ibindi bimenyetso byihariye. Ingero zimwe ni izi:

• Ubumuga bwo mu mutwe
• Impinduka z'uburebure
• Ibibazo byo kugenzura imitsi cyangwa indwara zo kugenda

Ariko, ibindi bimenyetso nk'ibi bibaho mu bwoko bwa albino budasanzwe (OCA). Muganga wawe ashobora kukugira inama nziza ku bimenyetso wowe (cyangwa umwana urera) ushobora kugira.

Kuki ubu bwoko bw'aba albinism (OCA) bubaho?

Albinism (OCA) iterwa n'impinduka (mutation) muri ADN yacu, bivuze inenge y'uturemangingo igira ingaruka ku buryo umubiri wacu ukora melanin. Rero, ni indwara y'uturemangingo. Hari uburyo bubiri ishobora kubaho:

• Umurage uturuka ku babyeyi: Akenshi, albino (OCA) iterwa n'ubumuga bw'uturemangingo (mutations) buturuka ku babyeyi. Ubu bwoko buhora buturuka ku bwoko bwa autosomal recessive.Mu magambo make, ibi bivuze ko umwana azarwara iyi ndwara ari uko azunguye gene ifite inenge kuri nyina na se. Ntabwo bihagije niba ikomoka kuri umwe muri abo bombi.
• Impinduka zitunguranye ziba mu gihe cy'uruhinja: Hari igihe, impinduka zitunguranye mu ngirabuzimafatizo zishobora kubaho mu ntangiriro z'ubuzima bw'umwana, atari umurage w'ababyeyi. Abaganga ntibazi neza impamvu ibi bibaho, kandi ntibashobora kubihanura mbere y'igihe.

Ni ibihe bibazo bindi bishobora guterwa n'ubuswa bw'aba-albino (OCA)?

Nkuko twabivuze mbere, melanin ni ibara ririnda. Imibiri yacu irayikora kugira ngo yinjize imirasire ya UV ituruka ku zuba. Niyo mpamvu abantu badafite albinism bakunze kwijima iyo bagiye ku zuba. Iyi mirasire ya UV yangiza ADN mu turemangingo tw'uruhu rwacu. Iyi mirasire yongera ibyago byo kurwara kanseri y'uruhu, cyane cyane kanseri y'urusenda rwa basal na kanseri y'urusenda rwa squamous. Ibyangiritse bivuye ku mirasire ya UV birakomeza kwiyongera, bityo uko byangiritse byinshi, ni ko ibyago byo kurwara kanseri byiyongera. Abantu bafite albinism bafite melanin nke, bityo ni ngombwa kurinda uruhu rwabo izuba.

Ni gute umuganga asuzuma neza ikibazo cy’ubuswa bw’ubwonko (OCA)?

Muganga ashobora gukeka ko ufite OCA iyo abonye impinduka mu ruhu rwawe, mu musatsi, cyangwa mu maso. Akenshi ikunze kumenyekana ukiri muto cyane. Abaganga b'abana nibo ba mbere bagufasha gusuzuma iyo ndwara. Abaganga bashobora gukoresha uburyo butandukanye kugira ngo bemeze OCA kandi bamenye ubwoko bwihariye.

Bumwe muri ubwo buryo ni:

• Isuzuma ry'umubiri
• Gupima amaraso
• Isuzuma ry'amaso
• Gupima imiterere y'uturemangingo
• Ikizamini cy'ubushobozi bwo kureba (VEP)
• Tomografia ijyanye n'imikorere y'amajwi (OCT)

Ese hari uburyo bwo kuvura albino (OCA)?

Mu by'ukuri, nta muti uhari wo kuvura albino (OCA). Ariko, hari uburyo butandukanye bwo kuvura bushobora kugabanya ububabare bujyanye n'iyi ndwara.

Icyibandwaho cyane ku bantu bafite albino (OCA) ni ukuvura indwara z'amaso zijyanye na zo, harimo:

• Ijisho ry'umunebwe (Amblyopia)
• Ijisho rishobora kwangirika (Strabismus)
• Amakosa yo gusubiza inyuma

Muganga wawe w'amaso ashobora kukugira inama yo kwambara indorerwamo z'izuba cyangwa indorerwamo zifite ibara ry'umutuku kugira ngo ugabanye ubwoba bwo kwifotoza no kurinda amaso yawe izuba.

Hari umuti umwe witwa nitisinone (izina rya Nityr® cyangwa Orfadin®). Byagaragaye ko ufasha abantu bafite albinism yo mu bwoko bwa 1. Nitisinone ikora mu kugenzura isenyuka rya aside amine y'ingenzi yitwa tyrosine mu mubiri wacu. Ubushakashatsi bwakozwe mu 2019 bwagaragaje ko nitisinone yafashije abantu bakuru batanu bafite albinism yo mu bwoko bwa 1 kugira ibara ry'uruhu no kunoza icyerekezo cy'amaso. Abashakashatsi kandi bemeza ko gutangira umuti ukiri muto bishobora kurushaho kugira akamaro.

Wibuke ko hari ibintu byinshi bijyana mu guhitamo uburyo bwo kuvura, bityo ni umuhanga mu by'amaso gusa ushobora kuguha amakuru ajyanye n'uburyo bwiza bwo kuvura (n'umwana wawe). Ni we uzaba umuyobozi wawe.

Bimeze bite kubana n'ubuswa bw'aba albino (OCA)?

Uburwayi bwo mu maso (OCA) ni indwara ibaho ubuzima bwose. Ingaruka zishobora gutandukana bitewe n'umuntu ku giti cye. Abantu benshi babona impinduka mu maso yabo, mu musatsi no mu ruhu. Hari abantu babona izi mpinduka neza cyane, abandi bashobora kutazibona cyane.

Abantu benshi bafite albino (OCA) bagira ibibazo by'ubuzima bijyanye n'iyo ndwara, cyane cyane ibibazo by'amaso. Ariko, ibibazo bishobora gushyira ubuzima mu kaga cyangwa bigashyira ubuzima mu kaga ni gake cyane. Ikintu cy'ingenzi ni ukwirinda kwangirika k'uruhu bitewe n'izuba ryinshi n'ibindi bituruka ku mirasire ya UV.

Iyo ukurikije inama za muganga wawe buri gihe kandi ukita ku maso yawe, abantu benshi bafite ikibazo cy’ububabare bw’amaso (OCA) bashobora kubaho ubuzima busanzwe nk’abandi bose. Ubusanzwe iyo ndwara ntabwo igira ingaruka ku buzima bwawe, cyane cyane iyo wirinze ingorane nka kanseri y’uruhu.

Ubuswa bw'ubuswa bw'abantu bafite ubumuga bwo mu mutwe (OCA) bushobora kubonwa byoroshye n'abandi, cyangwa bushobora kuba ikintu kitagaragara neza. Kubana n'iki kibazo - cyaba kigaragara cyangwa kitagaragara - bishobora kuzanwa n'imbogamizi. Ariko, izi ni imbogamizi ushobora gushaka ubufasha. Niba wowe cyangwa umwana wita ku ndwara ufite ibimenyetso bya ubuswa bw'ubuswa bw'abantu bafite ubumuga bwo mu mutwe (OCA), ni byiza kureba muganga cyangwa inzobere mu by'amaso. Bashobora kugufasha gusobanukirwa iyo ndwara no kugufasha kubona uburyo bwo kuvura n'ibikoresho bishobora kugufasha.

Ibintu by'ingenzi tugomba kwibuka muri iyi nkuru ni

Sawa, dore ibintu bimwe na bimwe ugomba kuzirikana mu byo twaganiriyeho uyu munsi:

• Uburwayi bwo mu maso (Oculocutaneous albinism - OCA) ni indwara iterwa n'uturemangingo. Ni inenge mu ikorwa cyangwa ikwirakwira rya melanin, ibara rituma uruhu rwacu, umusatsi n'amaso bihinduka ibara.
• Iyi ni indwara ibaho ubuzima bwose, ariko ingorane zijyana nayo zishobora gukemurwa.
• Igikuru ni ukurinda uruhu rwawe izuba.Kubera ko melanin nkeya bivuze ko habaho ibyago byinshi byo kurwara kanseri y'uruhu, ni ngombwa cyane kwambara indorerwamo z'izuba, ingofero, imyenda miremire, n'amavuta meza yo kwisiga ku zuba.
• Ugomba kandi kwita ku maso yawe by'umwihariko. Jyana na muganga w'amaso buri gihe kugira ngo akugire inama.
• Ni ibisanzwe kumva ubabaye kandi uhangayitse kubera iki kibazo. Ntugatinye gusaba ubufasha kwa muganga, umuryango cyangwa inshuti wizeye.
• Wibuke ko nubwo waba ufite albino (OCA), ushobora kubaho ubuzima bwiza kandi bushimishije nk'abandi bose!

Niba ufite ibindi bibazo kuri ibi, vugana na muganga. Ntugahangayike, hari ibisubizo kuri byose.

Albinism , OCA, indwara z'uruhu, indwara z'amaso, indwara z'uturemangingo, melanin, kurinda izuba