Kugira ubumuga bw'uruhu 'Albinism' bisobanura ko aho uri hose uba ugaragara

Naseem Akhtar yakuriye mu mujyi wa Coventry, aho we n'umuryango we bahuraga n'ivangura ndetse no gucirwa imanza n'abandi bantu bitewe n'imiterere y'uruhu rwabo.

Nubwo bakomoka mu muryango w'Abanyapakisitani, indwara y'uruhu rwera (Albinism) iri mu muryango wabo. Ababyeyi be bombi, abana babo batandatu, barimo na Naseem ubwe, ndetse n'abandi bavandimwe babo batandukanye, bose bafite iyi miterere iterwa n'uturemangingo ndangasano (genes).

Albinism ni imiterere ituma umubiri udakora neza umusemburo witwa Melanin, utuma uruhu, umusatsi n'amaso bigira ibara. Ibi bishobora kugira ingaruka ku bushobozi bwo kureba ndetse no ku isura y'umuntu uyifite.

Ibi bituma abagize uyu muryango bagira uruhu rwera cyane n'umusatsi w'umweru. Akhtar yavuze ko ibyo byatumye bagirirwa nabi n'abandi bantu.

Yagize ati: "Nakundaga kwanga aho batwika ibishashi mu ijoro ry'ibirori (Bonfire Night), kuko wabaga uzi neza ko ibishashi bize kunyura mu mwenge w'umuryango w'inzu bakabiduteraho."

Mu myaka ya za 1980, igihe yakuriraga muri uyu mujyi, Akhtar yavuze ko ubuzima butari bworoshye.

Yagize ati: "Igihe navukaga, ivangura n'imyumvire mibi ku bantu bafite ubu bumuga byari bikomeye cyane. Ntekereza ko byari byaranagize ingaruka zikomeye ku babyeyi banjye, ndetse na marume na masenge bari bafite ubu bumuga, kuko bo bavukiye muri Pakisitani. Baje gutura i Coventry bafite imyaka 11 na 12.

"Ntushobora kwihisha ngo abantu batakubona. Ahantu hose uri, mu muryango uwo ari wo wose, abantu barakubona kandi ukagaragara ko utandukanye n'abandi. Ibyo bisaba imbaraga nyinshi n'ubutwari kugira ngo ubashe kwiyakira, kumva ko uri uw'agaciro no gukura wiyizera."

"Ndibwira ko ihungabana tugira tukiri abana bitewe no kutiyakira no kutumva ko turi abo turi bo, bishobora gukomeza kutugiraho ingaruka no mu buzima bwacu bw'ahazaza.

"Ugomba gushaka uburyo bwo guhangana n'amarangamutima.... Iyo ukiri umwana ugenda uhura n'itotezwa kubera ko ugaragara mu buryo butandukanye n'abandi, umubiri n'ubwonko byawe bishobora kumenyera guhora wumva ko uri mu kaga."

Nubwo yahuye n'izo ngorane, Akhtar avuga ko kuva akiri muto yari afite intego yo kumenyekanisha no gusobanurira abantu ibyerekeye Albinism.

"Igihe nari mfite imyaka igera kuri 11, nagiye kuri radiyo yo mu gace k'iwacu kugira ngo mvuge ku bijyanye na Albinism. Nabikoze kuko nifuzaga guhindura imyumvire abantu bari badufiteho, kugira ngo bareke kudufata nk'umuryango bashobora guhohotera cyangwa gutoteza uko bishakiye."

Akhtar arusha imyaka 14 murumuna we Mohammed Rafi, ubu ufite imyaka 32. Yavuze ko uburyo Rafi yakiriwe n'abantu akura bwari butandukanye cyane n'ubwo we yakiriweho.

Rafi yagize ati: "Twakomeje gutura mu gace kamwe ka Coventry, bityo abaturanyi bacu n'abaturage bo muri ako gace baratuzi. Mu myaka yakurikiyeho, abantu bagiye barushaho kumenya no gusobanukirwa n'ubu bumuga."

Akhtar yongeyeho ati: "Ibyo bigaragaza ko ibintu byagiye bihinduka kandi bigatera imbere. Kuba ubuzima Rafi yanyuzemo butandukanye cyane n'ubwo nanyuzemo, bigaragaza ko twe nk'umuryango mugari tugenda turushaho kwakira abantu bafite imiterere itandukanye n'iy'abandi, kandi ko tugenda turushaho kwisanga gake gake."

Rafi ufite ikibazo cyo kutabona neza yongeyeho ati: "Ikintu nyamukuru kiduteza ingorane ni ikibazo cyo kutabona neza."

Nk'uko ikigo cy'ubuzima cy'u Bwongereza (NHS) kibivuga, igabanuka ry'umusemburo wa Melanin ku bantu bafite Albinism rishobora gutera ibibazo bitandukanye by'amaso, birimo: Kutabona neza. Astigmatism: ikibazo cy'amaso gituma umuntu abona ibintu bitagaragara neza bitewe n'imiterere idasanzwe y'ijisho, cyangwa akaba yagira Photophobia: kumva ububabare cyangwa kutihanganira urumuri rwinshi..

Mu mwaka wa 2022, aba bavandimwe bahawe igihembo cya Guinness World Records kubera kuba ari bo bavandimwe benshi bo mu muryango umwe bafite Albinism.

Akhtar yavuze ko iki gihembo cyari ubutumwa bukomeye bugaragaza ko "ntacyo bitwaye kuba umuntu atandukanye n'abandi, kuko buri wese afite uburenganzira bwo kuba uko ari."

Nta mwana n'umwe mu bana babo ufite Albinism, ariko bose batwaye uturemangingo ndangasano (genes)

Aba bavandimwe bavuze ko batababajwe n'uko iyi miterere ishobora kurangirira ku gisekuru cy'abana babo, ntikomeze kugaragara mu bisekuru bizaza.

Akhtar yagize ati: "Nubwo dufite iyi miterere idutandukanya n'abandi, tunazi ingorane twanyuzemo kugira ngo tubashe kubona uko tubaho no kumenyera kubaho muri ubu buryo budasanzwe.

"Abana bacu bo ntibazahura n'ingorane zo kugira ubumuga cyangwa indwara y'igihe kirekire. Ntekereza ko ari umugisha.

"Nubwo twize kwiyakira kubo turi bo.. Bisaba imbaraga n'umuhate ngo ubashe kwishimira uruhu rwawe."

'Mbaye nshoboye kubera abandi urugero, naba nasohoje inshingano zanjye'

Akhtar yongeyeho ko binyuze mu gusobanurira abantu ibyerekeye Albinism, yiringiraga ko azafasha ibisekuru bizaza by'abantu bafite ubu bumuga.

Ati: "Dushobora kuvuganira abantu bafite ubu bumuga, tukabaha ijwi kandi tugafasha guhindura imyumvire ya sosiyete."Ibyinshi bishingira ku buryo wowe ubwawe wibona. Uko ugenda uhindura imyumvire ufite kuri wowe ubwawe, ni ko ubuzima bwawe bushobora kurushaho kuba bwiza.

"Igihe nari nkiri umwana, hari umuntu wambereye isoko y'ihumure. Yari umwarimu wihariye wazaga kumfasha igihe nari nkiri muto, kandi na we yari afite Albinism.

"Yarandemeye kandi ambera urugero rwiza. Bityo, niba nanjye nk'umuntu nshobora kugira icyo natanga ku iyi si, nkaba isoko y'ihumure n'ihirwe ku bandi, numva ko nzaba nasohoje inshingano zanjye kuri iyi si."