Ibi barabisaba mu gihe Umuryango Nyarwanda w’abagore bafite ubumuga (UNABU), n’abafatanyabikorwa bayo wagaragaje ko mu bushakashatsi wakoreye mu Turere dutandukanye tw’Igihugu, bwerekana ko nubwo ingaruka z’imihindagurikire y’ikirere zigera kuri bose, ariko abagore n’abakobwa bafite ubumuga mu ngeri zitandukanye, bo bashegeshwa kurusha abandi bikabasiga mu buzima bushaririye.

Muri ubwo bushakashatsi bwakorewe mu Turere turimo Bugesera, Gakenke na Nyabihu, bwagaragaje ko hari ingamba nyinshi Leta yashyizemo imbaraga mu kwita ku bafite ubumuga cyane cyane abagore ariko hakiri ibindi bikwiye gushyirwamo imbaraga kuko hari abafite ubumuga usanga nta makuru baba bafite ajyanye n’imihindagurikire y’ibihe.

Ibi kandi bishimangirwa na Mushimiyimana Gaudance, Umuyobozi Nshingwabikorwa w’Umuryango Nyarwanda w’abagore bafite ubumuga (UNABU), agira ati, "Ku ruhande rw’abagore n’abakobwa bafite ubumuga, twabonye amakuru rimwe na rimwe atazwi adakunze kugaragarira buri wese, twabonye inkuru mbamutima z’umugore n’umukobwa ufite ubumuga wahuye n’ibiza ubuzima aba abayemo. Icya mbere twabonye, ni uko amakuru ari makeya ku buryo bakwirinda bo ubwabo n’uburyo bahangana n’ibibazo bijyanye n’imihindagurikire y’ikirere bishingiye ku byiciro bitandukanye by’ubumuga."

Ikindi yagaragaje kandi harimo ikibazo cy’amateka n’umuco usanga umugore n’umukobwa bafite ubumuga barahezwaga bakiri batoya, kubera kubatakariza icyizere n’umuryango bigatuma batiga, bikabashyira mu bukene bw’igihe kirekire bityo n’ibikoresho byakabafashije kumenya ayo makuru birimo radio, telefone cyangwa televiziyo batabona ubushobozi bwo kubitunga.

Ku bijyanye n’icyo ayo makuru atandundakanye babonye bagiye kuyakoresha mu gukemura ibibazo byose byagaragajwe muri ubwo bushakashatsi, Mushimiyimana yavuze ko ari urugendo batangiye ruzakorwamo ubuvugizi kugira ngo aho babonye ibyuho biri mu mategeko ndetse n’ahari ashyirwe mu bikorwa.

Ati, "Ni urugendo dutangiye, intabwe ya mbere twayiteye yo kuza tukicara tukaganira, tubabwira ibyo twabonye. Mwumvise ko hatanzwe ibitekerezo ku gikwiye kuba cyakorwa. Hanyuma ibi ngibi tubonye, inyunganzi zatanzwe n’ubushakashatsi, icya mbere tugiye gukora ni ubuvugizi kugira ngo ibyuho biri mu mategeko bikosoke ariko nanone amategeko ahari ashyirwe mu bikorwa, hashyirweho ingengo y’imari ya ngombwa kuko gushyiraho itegeko ni kimwe, Politike ni ikindi n’ingengo y’imari yo kubishyira mu bikorwa ni ikindi no guha ubumenyi ababishyira mu bikorwa."

Bamwe mu bafite ubumuga cyangwa abafite abantu mu miryango yabo bafite ubumuga butandukanye, bagaragazaga ko bahura n’ibibazo bitandukanye yaba ubwabo cyangwa ababo kuko usanga bagirwaho ingaruka zirimo no kuba badafite ubushobozi ariko byagera ku mihindagurikire y’ikirere, bikaba ikibazo gikomeye cyane kuko usanga bamwe baba banakora ubuhinzi buciriritse bigatuma bibasirwa n’ubukene bukabije bagasaba ko Leta n’abafatanyabikorwa bajya bagira uko babafasha mu mibereho.

Umwe mu babyeyi bafite umwana ufite ubumuga bukomatanyije, waturutse mu Karere ka Nyabihu, kari mu twibasiwe n’ibiza umwaka ushize, yavuze ko uyu mwana amurera wenyine kuko umugabo we yitabye Imana ndetse ubwo ibiza byibasiraga Akarere atuyemo umwaka ushize, byamukomereye kuko byamusigiye ingaruka zikomeye n’uyu munsi atarabasha kwikuramo.

Ati, "Nkanjye mfite umwana ufite ubumuga bukomatanyije, kumurera no kumwitaho bimbera ingorabahizi, harimo kumumenyera imiti anywa, kuyibona n’ibindi kandi mu byukuri murera njyenyine kuko se yaratabarutse. Akarere kacu ka Nyabihu murabizi kahuye n’ibiza, ibyo rero noneho byasize ingaruka na nubu ntarabasha kuvamo. Turasaba rwose ko inzego zajya zitwegera zikadufasha kuko ntibiba byoroshye."

Kuri iki kibazo, cyo gushakira ibisubizo byihuse abagore bafite ubumuga cyangwa ababafite mu miryango yabo, Nibagwire Donatha, umukozi ushinzwe kwimakaza ry’uburinganire mu Ihuriro Nyarwanda ryita ku mihindagurikire y’ibihe n’iterambere (RCCDN), yavuze ko nk’umuryango utari uwa Leta, bihutira gukora ubutabazi bw’ibanze ku bahuye n’ibibazo bitandukanye, kureba ibibazo byihariye kuri buri cyiciro ndetse no gukora ubuvugizi kugirango haboneke igisubizo kirambye.

Abafite ubumuga bagaragaje imbogamizi n’ibikwiye gushyirwamo imbaraga

Mu biganiro byabaye mu matsinda, bamwe mu bagore n’abakobwa bafite ubumuga bagaragaje ko mu bihe by’ihindagurika ry’ikirere hari benshi bagizweho ingaruka mu buryo bukomeye bitandukanye n’abadafite ubumuga bityo bifuza ko hari ibyakwitabwaho.

Umwe mu bafite ubumuga bwo kutavuga, yagize ati, "Mfite ubuhamya bwa mugenzi wanjye ufite ubumuga, wahuye n’ingorane ubwo aho batuye bibasirwaga n’ibiza, we yabimenye asanze aho yari aryamye yarengewe n’amazi, murumva rero haracyari ikibazo gikomeye dusaba ko inzego zadufasha kuko abafite ubumuga mu bihe by’ihindagurika ry’ibihe bahura n’ingorane zikomeye."

Mu bindi byagaragarijwe muri ibyo biganiro, harimo kuba basaba Leta n’imiryango itandukanye yita ku bafite ubumuga ndetse n’iyita ku kurengera ibidukikije, ko hashyirwaho ingamba zihariye zo kurengera abafite ubumuga bigahera mu nzego z’ibanze zibegereye kugirango babashe kugira imibereho myiza, kubona ubuvuzi burimo no kubona inyunganirangingo n’insimburangingo ku bazikeneye, kwigishwa n’ibindi bitandukanye.

Basaba ko hakwiye gukorwa ubukangurambaga bwa buri wese mu kwita ku bafite ubumuga, ibikorwa remezo biborohereza mu bumuga bwabo no kuvugurura amategeko agamije kubarengera ndetse no kubona ubutabera cyane cyane mu gihe hari abahuye n’ibikorwa by’ihohoterwa.

Abafite ubumuga bw’uruhu bo bagaragaza ko imihindagurikire y’ibihe ikunze kubagiraho ingaruka cyane cyane mu bihe by’izuba aho baba bakeneye amavuta yo gusiga uruhu rwabo kuko usanga abenshi bakunze no kurwara kanseri kubera kubura ayo mavuta.

Dr Nicodem Hakizimana, uyobora Umuryango w’abafite ubumuga bw’uruhu witwa Organization for Integration and Promotion of People with Albinism (OIPPA), aha niho yehereye agaragaza ko uruhu rwabo rukorana cyane n’iryo hindagurika ry’ikirere kandi ingaruka zikabageraho ako kanya bityo iyo batayabonye bibangamira imikorere yabo bityo ntibiteze imbere.

Ati, "Abafite ubumuga bw’uruhu ni bantu bagerwaho n’ingaruka z’uwo mwanya zituruka ku mihindagurikire y’ikirere, hari imbogamizi ziterwa n’imvura hari n’iziterwa n’izuba. Reka mvuge ku ziterwa n’izuba, murabizi ko abantu bafite ubumuga bw’uruhu batagira melanine zishobora gutuma bahangana n’imirasire y’izuba, abenshi ntabwo bakora akazi ko mu biro, bakora imirimo nk’iyabandi Banyarwanda, bisaba ko bajya ku kazi kuva mu gitondo kugera ku mugoroba ngo babone uko babaho."

Akomeza agira ati, "Iyo izuba ryabaye ryinshi rero nko muri iki gihe turimo, umutu ufite ubumuga bw’uruhu wavuye murugo mu gitondo, akajya ku kazi agakora, rya zuba ritwika uruhu rwe kandi bikaba bimusaba kumara iminsi itatu cyangwa ine ari munzu atongera gushoka kugira ngo uruhu rwe rwongere kwiremarema kuko ruba rwabaye ibisebe, ibi rero bigira ingaruka cyane ku mibereho y’abantu bafite ubumuga bw’uruhu, cyane cyane ubukene kuko badakora igihe kirekire."

Dr Nicodem yagaragaje ko n’ubwo hari umurongo mugari watanzwe na Perezida wa Repubulika ku kibazo cy’amavuta y’abafite ubumuga, ariko hakiri imbogamizi ku myumvire y’abakora mu nzego z’ubuzima kuko hari amavuriro usanga atayafite ndetse n’ayafite akaguma mu bubiko abayakeneye ntibayabone uko bikwiye, bityo agasaba ko hakorwa ubukangurambaga ku bayobora ibyo bigo nderabuzima kugira ngo ayo mavuta akurwe mu bubiko ashyirwe ahantu hose hashoboka hajya imiti y’ibanze kugira ngo uyakeneye ayabone adasiragijwe.

Umukozi muri Minisiteri y’ibidukikije yashimye inzego zateguye ibi biganiro ndetse n’ubushakashatsi bwakozwe mu kugaragaza ibikibangamiye abafite ubumuga mu cyiciro cy’abagore n’abakobwa mu bihe by’imihindagurikire y’ikirere.

Yavuze ko mu isesegura cyangwa ubushakashatsi bugiye kujya bukorwa hazajya habaho uburyo bwo kugera ku byiciro byose kugirango nihakenerwa kumenya bimwe mu bibazo biri mu cyiciro runaka, bamenye aho bahera.

Muri rusange abagore n’abakobwa bafite ubumuga, barasaba ko habaho umwihariko mu bihe by’imihindagurikire y’ikirere cyane cyane mu bihe by’ibiza, bagahabwa ubutabazi n’ubufasha mbere y’abandi.

Hagaragajwe kandi ko mu nama mpuzamahanga yiga ku mihindagurikire y’ibihe izabera muri Azerbaijan ku nshuro ya 29, ibi bibazo byose byagaragajwe byumwihariko ibibangamiye abagore n’abakobwa bafite ubumuga, binyuze muri Minisiteri yo kurengera ibidukikije n’abandi bafatanyabikorwa bayo bizaganirwaho, mu rwego rwo kubishakira ibisubizo.