Ese wowe cyangwa umwana wawe mufite ibibazo byo kutabona? Menya ibyerekeye indwara ya Stargardt!

Ese wowe cyangwa umwana wawe mufite ikibazo aho mudashobora kubona ibintu imbere, cyangwa aho mureba hatangiye kuba heza? Wenda mushobora kubona ibintu bikukikije, ariko ibyo mureba ntibisobanutse neza. Niba mufite ibimenyetso nk'ibi, imwe mu mpamvu zishobora kuba ari indwara yitwa Stargardt Disease . Reka tubiganireho mu buryo bworoshye butuma musobanukirwa.

Indwara ya Stargardt ni iki?

Mu magambo make, indwara ya Stargardt ni indwara igira ingaruka ku gice cy'ingenzi cy'amaso yacu , 'macula' . Tekereza muri ubu buryo: niba ijisho ryawe rimeze nka kamera, 'retina' ni ururenda ruri inyuma ya kamera, nk'uko bigaragara muri filime, aho amashusho afatwa. 'Macula' ni agace gato koroheje cyane hagati muri 'retina'. Iyo turebye imbere, iyo dusoma igitabo, iyo tureba mu maso h'umuntu, ni yo 'macula' idufasha kubona ibintu neza. Ibi tubyita 'icyerekezo cy'ibanze '.

Iyo urwaye indwara ya Stargardt, "icyerekezo cyawe cyo hagati" kigenda kigabanuka uko igihe kigenda gihita. Hari igihe ibi bishobora no kugira ingaruka ku "cyerekezo cyawe cyo mu mpande", ari na bwo bushobozi bwo kubona ibintu bikikije amaso yawe.

Ushobora kuba warumvise iby’indwara yo kwangirika kw’amagufwa . Ni indwara ikunze kwibasira abantu bakuze, cyane cyane abarengeje imyaka 60. Yitwa indwara yo kwangirika kw’amagufwa ifitanye isano n’imyaka . Ariko, indwara ya Stargardt itandukanye. Ikunze kwibasira abana n’urubyiruko ruri munsi y’imyaka 20. Niyo mpamvu abaganga rimwe na rimwe bayita indwara yo kwangirika kw’amagufwa y’abakiri bato . Iyo igize ingaruka ku nkengero za retina, yitwa fundus flavimaculatus .

Noneho reka turebe impamvu ibi bibaho. Imibiri yacu ifite ikintu cy'umuhondo gifite amavuta cyitwa 'lipofuscin' . Ubusanzwe, ibi biva mu mubiri. Ariko, ku muntu urwaye indwara ya Stargardt, iyi 'lipofuscin' ikorwa cyane cyangwa ntisohoke neza. Hanyuma iyi 'lipofuscin' y'inyongera irundanya muri 'retina'. Ibi bitera kwangirika kwa ' photoreceptors', ubwoko bwihariye bw'uturemangingo tw'urumuri muri 'retina' . Uko igihe kigenda gihita, uku kwangirika gutera ubusembwa bwo kutabona burundu.

Ni ibihe bimenyetso by'indwara ya Stargardt?

Indwara ya Stargardt ishobora gutera impinduka zikurikira mu maso yawe no mu kureba kwawe:

• Kubona utudomo twijimye cyangwa ahantu hatagaragara neza mu maso:Iyo urebye imbere, ahantu hamwe hashobora kugaragara nk'umukara cyangwa igihu.
• Kubona ibintu mu buryo butari bwo : Kubona ibintu neza, kubona ibintu mu buryo butari bwo.
• Ubushobozi bwo kubona urumuri: Kumva bigoye kubona mu zuba cyangwa mu matara yaka cyane.
• Ubutabona bw'amabara bushya: Nubwo wabonaga amabara neza, ubu ntushobora gutandukanya amabara amwe neza.
• Kugorwa no kumenyera urumuri ruto/ruri hejuru: Iyo uvuye ahantu haka cyane ujya ahantu hijimye mu buryo butunguranye, cyangwa iyo uvuye ahantu hijimye ujya ahantu haka cyane, bifata igihe kirekire kugira ngo amaso amenyere.
• Kutabona neza nijoro : Kutabona neza nijoro biragabanuka ugereranyije na mbere.

Igikuru ni uko ibimenyetso bya Stargardt Disease bikunze kwiyongera buhoro buhoro. Uko igihe kigenda gihita, ushobora gutakaza hafi ya byose mu maso. Ariko, ushobora kuba ugishobora kubona kure y'impande z'amaso yawe (amaso yo mu mpande). Ariko, ibintu biri imbere bizagenda bitagaragara neza.

Ni izihe mpamvu zitera indwara ya Stargardt?

Indwara ya Stargardt ni "indwara y'uturemangingo" . Ni ukuvuga ko iterwa n'impinduka mu turemangingo twacu. By'umwihariko, impamvu nyamukuru ni ihinduka mu turemangingo twitwa "ABCA4 gene." Iyi "ABCA4 gene" ifasha " retina" yacu gukora neza.

Ibi ni 'uruhererekane rw'ubuzima '. Bivuze ko byanduzwa ababyeyi bijya ku bana. Indwara ya Stargardt iragwa mu buryo bwa 'autosomal recessive pattern' . Mu magambo make, kugira ngo umwana agire iyi ndwara, nyina na se bagomba kuba bafite iyi 'gene ya ABCA4' yahindutse. Ntabwo bihagije ko umuntu umwe gusa ayigira.

Abaganga bapima iki kibazo gute? (Isuzuma)

Umuganga w'amaso ashobora kumenya niba ufite iyi ndwara. Azasuzuma amaso yawe, arebe uko ubona, kandi arebe uko amaso yawe ameze. Uzakenera kubwira umuganga igihe ibimenyetso byawe byatangiriye n'ibibazo ufite.

Ushobora kandi gukenera gukora ibizamini bimwe na bimwe nk'ibi:

• Electroretinography (ERG): Iyi ireba uburyo retina yawe yitabira urumuri rwinjiye mu jisho ryawe.
• Angiografiya ya Fluorescein: Iki ni ikizamini cyo kureba imitsi y'amaraso iri mu jisho.Reba, batera irangi ridasanzwe mu mutsi uri mu kuboko kwawe maze bagafata amashusho y'imbere mu jisho ryawe.
• Amafoto ya Fundus na fundus autofluorescent: Ibi bifotora neza retina na macula yawe. Ibi bigufasha kubona uburyo lipofuscin yinjizwa.
• Gupima imiterere y'uturemangingo : Ibi bishobora kwemeza niba hari impinduka mu ngirabuzimafatizo ya ABCA4.
• Isuzuma ry’imiterere y’amatwi (OCT): Ibi ni nko gusuzuma retina. Ishobora kureba ibintu nk'ubunini bw'ibice bya retina, niba lipofuscin ihari, ndetse niba yangiritse.

Ni ibihe byiciro by'indwara ya Stargardt?

Muganga w'amaso yawe ashobora kugabanya indwara mu byiciro bitandukanye, bitewe n'uko igenda itera. Dore uko bigenda:

• Icyiciro cya 1: Kuri iki cyiciro, ikintu cy'umuhondo cyitwa lipofuscin gitangira kugaragara nk'udusimba duto kuri macula. Ushobora kugira ibimenyetso byoroheje cyane, cyangwa nta bimenyetso na bike ufite.
• Icyiciro cya 2: Ubu utwo tubara twa 'lipofuscin' twakwirakwiriye mu tundi duce twa 'retina' dukikije 'macula.' Ubu ushobora kuba utangiye kumva ibimenyetso neza kurusha mbere.
• Icyiciro cya 3: Kuri iki cyiciro, uduce twa `lipofuscin` twongeye kwirundanya muri `macula` hanyuma tugatangira kwangiza `macula`. Ibi byitwa `atrophy` ( urupfu rw'uturemangingo). Ibi bituma ibimenyetso birushaho kwiyongera.
• Icyiciro cya 4: Kwangirika kwa macula (atrophy) ubu ni gukomeye cyane. Ibi bishobora gutuma utakaza ubushobozi bwo kureba neza cyangwa igice cyabyo.

Ni ubuhe buryo bwo kuvura indwara ya Stargardt?

Ikibabaje ni uko nta muti uhari wa Stargardt Disease cyangwa ubundi buryo bwo kuyivura bushobora gusubiza inyuma ingaruka mbi itera. Ariko ntugahangayike. Muganga w'amaso ashobora kugufasha gucunga ibimenyetso byawe no kugabanya umuvuduko wo kutabona neza. Ushobora gukora ibintu nk'ibi:

• Irinde gufata inyongeramusaruro zirimo vitamine A. Ubushakashatsi bumwe na bumwe bwagaragaje ko abantu barwaye Stargardt Disease bashobora kutabona vuba iyo bafashe vitamine A nyinshi. Kubwibyo, ntugafate inyongeramusaruro iyo ari yo yose ya vitamine A utabanje kuvugana na muganga wawe.
• Gukoresha indorerwamo, lenzi zo mu maso cyangwa ibikoresho byo mu maso bitareba neza bishobora kugufasha cyane mu mirimo yawe ya buri munsi.
• Reka kunywa itabi burundu (n'ibindi bicuruzwa birimo nikotine nka vaping). Kunywa itabi si byiza ku maso yawe na gato.
• Ambara ingofero cyangwa indorerwamo z'izuba nziza kugira ngo urinde amaso yawe iyo ugiye hanze.

Wibuke ko ibi atari imiti. Ariko, bishobora kugufasha kubaho neza igihe kirekire gishoboka.

Ese indwara ya Stargardt ishobora gukira?

Kugeza ubu nta muti uhari wa Stargardt Disease. Ariko, muganga wawe w'amaso ashobora kugufasha kwihanganira iyi ndwara.

Hari inkuru nziza. Abashakashatsi bakomeje gukora igerageza ry’ubuvuzi kugira ngo babone uburyo bushya bwo kuvura indwara nko kwangirika kw’amaso (harimo n’indwara ya Stargardt). Baza muganga wawe w’amaso niba ushobora kwitabira kimwe muri ibi bigeragezo by’ubuvuzi. Niba ari uko bimeze, ushobora kubona amahirwe yo guhabwa uburyo bushya bwo kuvura.

Ni ryari nkwiye gushaka inama kwa muganga?

Jyana na muganga cyangwa umuganga w'amaso ukimara kubona impinduka mu maso yawe cyangwa mu kureba kwawe. Ibimenyetso bya Stargardt Disease bishobora gusa n'iby'izindi ndwara z'amaso, wenda zikunze kugaragara cyane. Kubwibyo, ni ngombwa cyane gusuzuma no kuvura ibibazo byose by'amaso vuba bishoboka .

Ni iki wakwitega niba urwaye indwara ya Stargardt?

Ugomba kwitega ko utakaza ubushobozi bwo kureba hagati buhoro buhoro. Ku bantu benshi, iki kibazo kibaho buhoro buhoro, mu myaka myinshi, rimwe na rimwe mu myaka ibarirwa muri za mirongo. Ariko, kuri bamwe, gishobora kubaho vuba. Ubwoko bw'impinduka mu ngirabuzimafatizo yawe ya ABCA4 bushobora kugena uburyo bwo kureba vuba n'ingano y'uburyo utakaza. Muganga wawe w'amaso azakubwira byinshi kuri ibi.

Uzakenera kwipimisha amaso buri gihe . Baza muganga wawe inshuro ugomba kwipimisha amaso yawe n'ibindi bizamini ugomba gukora.

Ni gute nakwita ku ndwara ya Stargardt?

Hari ibintu byinshi ushobora gukora kugira ngo wite ku buzima bwawe:

• Kurya indyo yuzuye intungamubiri. Kurya imboga n'imbuto byinshi.
• Imyitozo ngororamubiri. Gukomeza umubiri wawe gukora cyane ni byiza kuri buri kintu cyose.
• Ntukanywe itabi.
• Genzura imihangayiko.
• Jya kwa muganga wawe ku gihe.

Ni ryari nkwiye kujya kwa muganga wanjye mu gihe mfite indwara ya Stargardt?

Muganga wawe w'amaso azakubwira gukomeza kubareba. Menya neza ko ugiye muri iyo minsi. Nanone, niba ugize impinduka zitunguranye mu maso yawe, cyangwa niba wumva ububabare cyangwa kutamererwa neza mu maso yawe, hita ubonana na muganga wawe.

Ni ibihe bibazo ngomba kubaza muganga wanjye ku bijyanye n'indwara ya Stargardt?

Niba urwaye indwara ya Stargardt, ushobora kubaza muganga wawe ibibazo nk'ibi:

• Ese ushobora kungira inama yo kunshyigikira hamwe n'abandi bari muri iki kibazo?
• Ese nujuje ibisabwa kugira ngo nitabire "igeragezwa ry'ubuvuzi" ?
• Ese nkwiye kuvugana n'umujyanama mu by'imiterere y'umubiri ? (Ibi bishobora kugufasha kumenya niba abandi bantu bo mu muryango wawe bari mu kaga.)
• Ese hari uburyo cyangwa ibikoresho byamfasha gukora imirimo ya buri munsi byoroshye kandi ntafite amaso meza ?

Amaherezo, ibintu byo kwibuka (Ubutumwa bwo kujyana mu rugo)

Kubana n'indwara ya Stargardt bishobora gutera ubwoba. Ikintu cyose kigira ingaruka ku kureba kwawe gishobora kugira ingaruka zikomeye kuri wewe. Ariko ntabwo uri wenyine. Umuganga w'amaso wawe n'itsinda ry'abaganga bashobora kugufasha kumenyera impinduka mu kureba kwawe, kurinda amaso yawe, no kubaho ubuzima bwiza kandi butekanye.

Nubwo nta muti uhari wa Stargardt Disease, abashakashatsi bahora bashaka uburyo bushya bwo kuvura. Niba ubyifuza, vugana na muganga wawe ku bijyanye no kwitabira igerageza ry’ubuvuzi. Ntucike intege!

Indwara ya Stargardt , Kubona neza, Kureba hagati, Retina, Macula, Indwara z'uturemangingo