Ese nawe ugira ikibazo cyo kutabona nijoro? Ese amaso yawe agenda arushaho kuba mabi buhoro buhoro? Reka twige kuri 'Retinitis Pigmentosa' (RP)!

Hari igihe ugira ingorane zo gutwara imodoka nijoro cyangwa mu buryo bw'urumuri ruto, si byo se? Cyangwa, wigeze ugongana n'umuntu utabonye aje aho uri? Niba warigeze guhura n'ibi, impamvu ishobora kuba indwara y'amaso yitwa 'Retinitis Pigmentosa' (RP). Ntugahangayike, iyi si indwara isanzwe, ariko ni ngombwa kuyimenya. Reka tubiganireho birambuye.

`Retinitis Pigmentosa` (RP) ni iki? Kuki ari ingenzi cyane?

Mu magambo make, `Retinitis Pigmentosa` (RP) ni izina rusange ry'itsinda ry'indwara z'amaso zishobora guhererekanywa kuva ku gisekuru kugeza ku kindi. Zigira ingaruka cyane cyane kuri `retina` iri mu jisho ryawe.

Tekereza ijisho ryawe nk'aho ari kamera ya filime ishaje. Ifoto iri muri izo kamera ifatwa kuri filime. Uko ni ko bimeze, imbere mu jisho ryawe, inyuma, hari agace gato koroheje kandi gafite ubushobozi bwo kumva urumuri kitwa retina. Iyo urumuri rw'ibintu tubona ruguye kuri retina, ruhindura urwo mucyo mo ibimenyetso by'amashanyarazi. Hanyuma ibyo bimenyetso bijya mu bwonko maze tukabona tuti, 'Oh, ibi ni ibyo, ibi ni ibyo.'

Rero, niba retina idakora neza, ni nk'aho filime iri muri kamera yangiritse. Uko wakwibanda kose, ishusho ntizagaragara neza. Mu buryo nk'ubwo, niba ufite retina irwaye, nubwo waba wambaye indorerwamo cyangwa indorerwamo z'amaso, bizagira ingaruka ku kureba kwawe.

Retina irimo ubwoko bwihariye bw'uturemangingo tw'imitsi twitabira urumuri. Utwo turemangingo twitwa photoreceptor. Hari ubwoko bubiri bwatwo: inkoni n'udusimba. Udusimba tudufasha kubona mu rumuri ruto, cyane cyane nijoro. Udusimba tudufasha kubona amabara n'utundi duce duto neza. Hamwe n'utwo turemangingo, hari ubundi bwoko bw'uturemangingo muri retina bwitwa retinal pigment epithelium cells. Utwo turemangingo twose dukorana kandi tugafatanya kugira ngo tubone neza.

Retinitis Pigmentosa (RP) n'izindi ndwara z'ijisho zikomoka ku ndwara ya retina (IRDs) ziterwa n'impinduka mu ngirabuzimafatizo zituma izi selile zikora neza, zitwa gene mutations . Ibi bituma uturemangingo ducika intege buhoro buhoro tugahagarara gukora.

RP si indwara imwe. Kubera ko ari itsinda ry'indwara, kutabona bishobora gutandukana bitewe n'umuntu ku giti cye. Abantu benshi bagira ikibazo cyo kutabona neza , kandi bamwe bashobora guta ubwenge bwabo burundu. Izi mpinduka mu kureba akenshi zitangira mu bwana. Ariko rimwe na rimwe izi mpinduka ziba buhoro cyane ku buryo ushobora no kutazibona. Kuri bamwe, kutabona bibaho vuba. Muri bumwe mu bwoko bwa RP, kutabona bihagarara ku rwego runaka.

Icy'ingenzi kurushaho, Retinitis Pigmentosa ikunze kwibasira amaso yombi .

Ni ibihe bimenyetso bya RP? Bikugiraho ingaruka ki?

Ibimenyetso bya 'Retinitis Pigmentosa' ntibigaragara mu buryo butunguranye. Bigaragara buhoro buhoro. Dore bimwe mu bimenyetso bya mbere:

• Ibibazo byo Kubona nijoro: Ushobora gusanga ufite ingorane zo kubona ibintu nijoro, cyane cyane iyo urumuri ari ruke. Ibi bishobora kugorana iyo ugenda mu muhanda nijoro cyangwa mu nzu mu rumuri ruto.
• Ibibazo byo kubona mu mucyo muto: Bishobora kugorana kubona ibintu neza, atari nijoro gusa, ahubwo no ahantu nk'icyumba cyijimye gato cyangwa icyumba cyo gukina sinema.
• Utudomo mu maso yo mu ruhande: Nubwo ushobora kubona icyo ureba, ushobora kutabona ibiri hafi yawe, urugero nk'imodoka iturutse ku ruhande cyangwa umuntu uje. Niyo mpamvu bamwe bagonga ibintu ku buryo butamenyekanye.

Uko igihe kigenda gihita, hari n'ibindi bimenyetso bishobora kugaragara. Ibi birimo:

• Kumva urumuri rucanye cyangwa rucanye: Hari abantu bashobora kumva urumuri rucanye cyangwa kumva bakubiswe n'inkuba.
• Kureba mu muyoboro w'amazi (Kugira icyerekezo cyo hagati gusa): Ibi ni nko kureba isi unyuze mu muyoboro w'amazi. Ushobora kubona gusa ibiri imbere, nta kintu na kimwe kigukikije.
• Gutinya foto - Kuba umuntu yumva cyangwa adamerewe neza mu rumuri rwinshi: Amaso ahinduka ubururu kandi biragoye kubona iyo ahuye n'izuba cyangwa amatara yaka.
• Gutakaza ubushobozi bwo kubona amabara: Amabara ashobora kutagaragara neza cyangwa ngo asa neza nkuko byari bimeze mbere.
• Kugira amaso make cyane: Mu bihe bikomeye, amaso ashobora kugabanuka cyane.

Icy'ingenzi: Niba ufite kimwe cyangwa byinshi muri ibi bimenyetso, ni byiza kubonana n'umuganga w'amaso vuba bishoboka.

Kuki indwara ya 'Retinitis Pigmentosa' ikura? Ni iyihe mpamvu ibitera?

Impamvu nyamukuru ya `Retinitis Pigmentosa` (RP) n'izindi `Inherently Retinal Diseases (IRDs)` ni impinduka zimwe na zimwe `(mutations genetique)` mu turemangingo twacu . Izi gene nizo zikora uturemangingo muri `(retina)` yacu kandi zigatuma dukora neza. Rero, iyo habayeho ikosa cyangwa impinduka muri utwo turemangingo, utwo turemangingo ntidushobora gukora neza. Uko igihe kigenda gihita, utwo turemangingo dupfa buhoro buhoro. Ni bwo kureba buhoro buhoro kugabanuka.

Kubera ko ari umurage, abana bashobora kuragwa izi mpinduka mu ngirabuzimafatizo z'ababyeyi babo. Ariko ntibivuze ko uzarwara iyo ndwara kuko hari umuntu wo mu muryango wawe uyirwaye. Birashoboka kandi ko ushobora kuyirwara nta muntu wo mu muryango wawe uyirwaye. Niyo mpamvu gupima ngirabuzimafatizo ari ingenzi.

Iki kibazo gikwirakwiriye ku isi hose gute?

Dukurikije imibare yo mu Burayi no muri Amerika, umuntu umwe kuri 3.500 kugeza kuri 4.000 ashobora kuba afite `Retinitis Pigmentosa`. Ku isi yose, bivugwa ko abantu bagera kuri miliyoni ebyiri barwaye iyi ndwara. Hari n'abantu bafite iyi ndwara muri Sri Lanka. Kubwibyo, ni ngombwa kubimenya.

Ni gute abaganga basuzuma indwara ya Retinitis Pigmentosa (RP)?

Niba ukeka ko ufite RP, muganga wawe azakora ibizamini bitandukanye kugira ngo agusuzume. Ni ngombwa cyane kwipimisha amaso buri gihe.

Gusuzuma amaso hakoreshejwe uburyo bwo kureba

Muri ibi, umuganga w'amaso cyangwa umuganga w'amaso akora ibi bikurikira:

• Bakubwira gusoma inyandiko iri ku rukuta.
• Ikubwira kureba ikintu n'amaso yombi.
• Igitutu kiri mu maso yawe kirimo gupimwa.
• Ikizamini cyo kureba mu mpande z'umubiri (Visual field test) gisuzuma uko ureba impande z'umubiri wawe.
• Kureba uburyo imboni y'ijisho ryawe ikira urumuri.
• Ijisho ryaguka iyo ushyize ibitonyanga mu jisho. Ibi bituma retina igenzurwa neza.
• Ushobora kandi gufata amafoto ya retina.

Ikizamini cya Electroretinography (ERG)

Iki ni ikizamini cyihariye. Gipima uburyo retina yawe yitabira urumuri. Gipima uburyo uturemangingo dutandukanye two muri retina yawe (imigozi n'udusimba twavuze) bikora neza. Gikubiyemo kumurika amatara atandukanye imbere y'amaso yawe. Ni kimwe mu byiciro by'ibizamini byitwa ophthalmic electrophysiology tests. Ibi bizamini kandi bireba uburyo amaso yawe n'ubwonko bwawe bitunganya ibyo ubona.

Isuzuma rya Optical Coherence Tomography (OCT)

Iki ni ikizamini kidakoreshwa mu gupima. Iki gipimo cya OCT gishobora gupima ubunini bwa retina yawe no gusesengura ubuzima bw'ibice byayo. Icyo ugomba gukora ni ukureba ikintu runaka, maze kamera idasanzwe igafata amafoto y'imbere mu jisho ryawe.

Ikizamini cya `Fundus Autofluorescence (FAF)`

Iki kandi ni "ikizamini cyo gupima" kidakoreshwa mu gufata amashusho y'ijisho. Gishobora gutanga amakuru menshi ku buzima bwa retina. Gikoreshwa mu gusuzuma, kuvura no gukurikirana indwara.

Hamwe n'ibi bipimo, muganga wawe ashobora kandi kukugira inama yo gupima imiterere y'umubiri n'umujyanama mu by'imiterere y'umubiri.Ushobora kandi gutanga inama yo gusura. Kuko iyo umenye neza icyo imihindagurikire y’uturemangingo itera RP, ushobora kubona igitekerezo cy’uko indwara izitwara mu gihe kizaza ndetse niba igira ingaruka ku bandi bagize umuryango. Ni ngombwa kandi guhabwa uburyo bushya bwo kuvura, urugero, ubuvuzi bw’uturemangingo, cyangwa kwitabira igeragezwa ry’ubuvuzi rijyanye na byo.

Ni ubuhe buryo bwo kuvura iyi ndwara ya `Retinitis Pigmentosa` (RP)? Ivurwa ite?

Mu by’ukuri, habayeho iterambere rikomeye mu kuvura Retinitis Pigmentosa (RP) n’izindi ndwara ziterwa n’imitsi mu myaka yashize, cyane cyane bitewe n’uko habayeho uburyo bushya bwo kuvura indwara nka gene therapy.

Dore bumwe mu buryo bwo gucunga RP muri iki gihe:

• Gukoresha ibikoresho bifasha mu kutabona neza n'ibikoresho bifasha: Hari ubwoko butandukanye bw'ibikoresho bikuza, indorerwamo zidasanzwe, ndetse n'ibikoresho by'ikoranabuhanga bishobora kumenya ikintu cyangwa uwo ari we iyo ugifasheho.
• Kwirinda izuba: Ni ngombwa kwambara indorerwamo z'izuba no kugabanya kwibasirwa n'urumuri rwinshi, kuko rimwe na rimwe urumuri rwinshi rushobora kongera imbaraga za RP.
• Kuvura izindi ndwara zifitanye isano: Kuvura indwara nka cystoid macular edema (CME) (umurundo w'amazi mu gice cyo hagati cya retina) zishobora kubaho na RP.
• Uburyo bwo kuvura indwara ya cataract: Hari abantu bafite RP bashobora kurwara cataract. Ibi bibaye, bashobora kubagwa.

Reka twige bike ku bijyanye n'ubuvuzi bw'uturemangingo.

Ikigo gishinzwe kurwanya indwara zandura (FDA) cyo muri Amerika cyemeje umuti wo kuvura imiterere y’uturemangingo witwa voretigene neparvovec-ryzl (Luxturna®) kugira ngo uvure ubwoko runaka bwa RP. Abantu bafite impinduka muri kopi zombi za RP65 gene bashobora kungukirwa n’ubu buryo bwo kuvura. Ariko, ubu bwoko bwihariye bwa RP buboneka gusa ku bantu bake.

Ubu hari igeragezwa ry’ubuvuzi rikorwa ku kuvura imiterere y’uturemangingo ku bundi bwoko bwa RP na IRD, bityo hakaba hategerejwe ubundi buvuzi mu gihe kizaza.

Ku bantu bafite RP ikomeye cyane, hari igihe bashobora gusuzuma igikoresho cyitwa retinal prosthesis .

Ese hari uburyo bwo gukumira ikwirakwira rya 'Retinitis Pigmentosa' (RP)?

Kubera ko indwara ya Retinitis Pigmentosa ikunze kuba indwara y’uruhererekane rw’indwara, ntabwo ishobora kwirindwa burundu.

Ariko hari ibintu ushobora gukora kugira ngo amaso yawe akomeze kuba mazima uko bishoboka kose:

• Jyana na muganga w'amaso buri gihe kugira ngo agupime amaso. Ibi bizagufasha kumenya ikibazo icyo ari cyo cyose hakiri kare.
• Ambara indorerwamo z'izuba kandi urinde amaso yawe urumuri rwinshi.
• Kurikira ubuzima bwiza. Rya neza kandi ugire imyitozo ngororamubiri mu mutekano.

Ni iki wakwitega niba ufite RP?

Retinitis Pigmentosa ntabwo itera imbere mu buryo bumwe cyangwa ku gipimo kimwe kuri buri wese. Ibi biterwa nuko hari imiterere myinshi itandukanye iyitera. Bitewe n'imiterere y'uturemangingo, uburyo indwara igira ingaruka kuri buri muntu buratandukanye. Niyo mpamvu ari ngombwa gupimisha imiterere y'uturemangingo no kugisha inama ku miterere y'uturemangingo.

Baza muganga wawe ibyerekeye igeragezwa ry’ubuvuzi ririho ubu, amatsinda y’ubufasha, n’ibikoresho by’amaso.

Ni ryari ngomba kujya kwa muganga?

Muri rusange, jya kwa muganga w'amaso buri gihe ku gihe gisanzwe. Nanone, niba ugaragaje ibimenyetso bishya, cyangwa niba ibimenyetso byawe birushijeho kwiyongera, jya kwa muganga ako kanya. Urugero:

• Niba wumva ko kureba kwawe kurimo kugenda kumera nabi (gusa neza cyangwa kubona amabara meza).
• Niba uhuye n'ububabare bushya cyangwa ububabare mu maso yawe.

Ibuka: Hari ubwoko bwinshi bwa Retinitis Pigmentosa, kandi si ubwoko bwose butera gutakaza ubushobozi bwo kureba. Uburyo bwiza bwo kurinda no kungukira mu kureba kwawe uko bishoboka kose ni ugusuzuma amaso buri gihe no gukurikiza amabwiriza ya muganga wawe.

Muri make, ibuka ibi! (Ubutumwa bwo kujyana mu rugo)

Indwara ya Retinitis Pigmentosa (RP) ni indwara ikomeye igomba gufatwa nk'iy'ingenzi. Ariko, niba uyimenye kandi ugafata ingamba zikenewe, ushobora kwifasha kubaho ubuzima busanzwe.

• Ntutinye, menya amakuru: Niba usanzwe urwaye indwara ya RP, menya amakuru neza. Baza muganga wawe ibibazo.
• Gusuzumwa buri gihe: Suzumwa amaso buri gihe nk'uko muganga wawe w'amaso yabigusabye.
• Gupima no gutanga inama ku ngirabuzimafatizo: Ibi ni ingenzi cyane kugira ngo usobanukirwe neza uko umeze.
• Shaka ubufasha: Vugana n'umuryango n'inshuti kuri ibi. Jya mu matsinda y'abaterankunga niba bikenewe. Ntabwo uri wenyine.
• Menya uburyo bushya bwo kuvura: Ubumenyi bw'ubuvuzi buri gutera imbere. Baza muganga wawe ibijyanye n'uburyo bushya bwo kuvura n'igeragezwa ry'ubuvuzi.

Hari ibintu byinshi ushobora gukora kugira ngo urinde amaso yawe. Icy'ingenzi ni ugukora ikintu gikwiye udatakaje icyizere.

` Retinitis Pigmentosa, RP, indwara z'amaso, kutabona neza, ubuhumyi bw'ijoro, indwara z'uturemangingo, retina, amaso