Ukuphila Nobu-albino

NGUMLOBELI WE-PHAPHAMA! EBENIN

UJOHN uthi: “Njalo uma ngigcwalisa ifomu elibuza uhlanga lwami, ngifaka uqhwishi ebhokisini elithi ‘Nginsundu,’ nakuba ngimhlophe kunabantu abaningi abafaka uqhwishi kwelithi ‘Ngimhlophe.’” UJohn, ongowaseNtshonalanga Afrika ohlala ngasemngceleni ophakathi kweBenin neNigeria, uyi-albino—okuwukuphazamiseka kofuzo okwenza amehlo, isikhumba, noma izinwele (kwezinye izimo amehlo kuphela) kungabi nombala. Bande kangakanani ubu-albino? Bukuthinta kanjani ukuphila komuntu kwansuku zonke? Yini engasiza ama-albino ukuba aphile nalesi simo?a

Nakuba ubu-albino buphawuleka kakhulu kubantu abanesikhumba esinsundu, buyatholakala nakwezinye izizwe, izinhlanga nabantu. Kusikiselwa ukuthi ubu-albino buthinta umuntu oyedwa kwabangu-20 000.

Amangqamuzana ofuzo aphazamisekile abangela ubu-albino angadluliselwa ezizukulwaneni ngezizukulwane ngaphandle kokubonakalisa izimpawu ezithile zabo. Kwaba njalo endabeni kaJohn. Akekho ezihlotsheni zakhe okhumbula ukhokho othile owayeyi-albino.

Abaningi bahlanganisa igama elithi “albino” nabahloli bamazwe bamaPutukezi bangekhulu le-17. Njengoba babehamba ngomkhumbi ogwini lwaseNtshonalanga Afrika, babona abantu abansundu nabamhlophe. Becabanga ukuthi bangabezinhlanga ezimbili ezingafani, babiza abansundu ngokuthi ama-Negro abamhlophe bababiza ngokuthi ama-albino—okungamagama esiPutukezi asho “abansundu” kanye “nabamhlophe.”

Umphumela Obunawo Esikhunjeni Nasemehlweni

Kubantu abaningi abanesikhumba esimpofu, ukuba selangeni kwenza isikhumba sibe nsundu uma sikhiqiza isakhi sombala okuthiwa i-melanin ukuze sivikeleke. Kodwa uJohn unohlobo lobu-albino okuthiwa i-oculocutaneous, okungolunye lwezinhlobo ezivame kakhulu.b Isikhumba sakhe, izinwele namehlo awanayo i-melanin. Lokhu kusithinta kanjani isikhumba? Njengoba singenaso lesi sakhi, isikhumba se-albino sisha kalula. Ukushiswa yilanga kukodwa akujabulisi futhi kubuhlungu. Kodwa ama-albino angasivikeli ngokwanele isikhumba sawo asengozini yokuba nomdlavuza wesikhumba. Lokhu kunjalo ikakhulukazi ezindaweni ezishisayo.

Ngakho, indlela esemqoka i-albino elingazivikela ngayo iwukuvikela isikhumba ngezingubo ezifanele. Ngokwesibonelo, uJohn ungumlimi. Ngakho lapho esebenza emasimini, uthwala isigqoko esinompheme omkhulu neyembe elinemikhono emide. Nakuba ezivikela ngale ndlela, uyachaza: “Ngezinye izikhathi ngiba nomuzwa wokuthi wonke umzimba wami uyasha ngaphakathi. Lapho ngifika ekhaya ngizinwaya ingalo, ngezinye izikhathi isikhumba sivele sixebuke.”

Enye indlela yokuzivikela ukugcoba umuthi wokuzivikela elangeni uma utholakala. Umuthi onezinga le-SPF elingu-15 ungcono kakhulu, futhi kufanele uwugcobe emizuzwini engu-30 ngaphambi kokuphumela elangeni, uphinde uwugcobe njalo ngemva kwamahora amabili.

Ubu-albino bungathinta namehlo ngezindlela ezihlukene. Isiyingi esinombala esweni ngokuvamile sivumela ilanga ukuba lingene emehlweni nge-pupil kuphela. Kodwa iso le-albino cishe lingabi nambala, okwenza ukukhanya okungaphandle kungene ngalesi siyingi kubangele ubuhlungu. Ukuze bavimbele lokhu, abaningi bafaka ikapisi, isigqoko, noma izibuko ezivimba imisebe e-ultraviolet. Abanye basebenzisa ama-contact lens anombala. UJohn uthi ngokuvamile kuphela izinsuku ezingazifaki izibuko zokuzivikela. Kodwa ebusuku ngezinye izikhathi ziyamxhopha izibani zemoto.

Ngokuvamile kucatshangwa ukuthi ama-albino anamehlo abomvana, kodwa lokhu akulona iqiniso. Amaningi anamehlo anesiyingi esimpunga ngokuphaphathekile, esinsundu, noma esiluhlaza okwesibhakabhaka. Pho, kungani ebonakala enamehlo abomvu? Incwadi ethi Facts About Albinism ithi: “Ngaphansi kohlobo oluthile lokukhanya, kuba nombala obomvana noma onsomi obonakala esiyingini samehlo, esingenawo umbala ogqamile. Lo mbala obomvana uvela kuyi-retina.” Lokhu kungafaniswa ne-red-eye, umbala obomvana osemehlweni ngezinye izikhathi obonakala ezithombeni ezithwetshulwe nge-flash.

Ama-albino avame ukuba nezinkinga zamehlo. Enye yazo ukushintsha kwezinzwa ezixhumanisa i-retina nobuchopho. Umphumela ungase ube ukungahambisani kwamehlo, okudala inkinga ekuboneni ukuthi izinto ziqhele kangakanani. Lesi simo kuthiwa i-strabismus. Ukulungisa le nkinga kungase kuhlanganise ukufaka izibuko noma ukuhlinzwa.

Emazweni amaningi ayikho indlela yokuyelapha noma imba eqolo. UJohn uphila kanjani ne-strabismus? Uthi: “Kufanele ngicophelele. Uma ngifuna ukuwela umgwaqo, angisebenzisi amehlo kuphela kodwa nezindlebe. Uma ngibona imoto, ngiyazi ukuthi akuphephile ukuwela umgwaqo uma ngiyizwa isondela.”

Ubu-albino bungabangela ne-nystagmus, ukunyakaza kwamehlo ngokungalawuleki. Lokhu kungenza umuntu angaboni kahle, abone izinto eziseduze noma ezikude kuphela. Izibuko noma ama-contact lens kungasiza ngezinye izikhathi, kodwa akuyilungisi imbangela yenkinga. Abanye baye bafunda ukunciphisa i-nystagmus lapho befunda ngokubeka umunwe esweni noma ngokutshekisa ikhanda.

Inkinga enkulu kaJohn akuyona i-strabismus noma i-nystagmus, kodwa ukubona izinto eziseduze kuphela. UJohn, ongomunye woFakazi BakaJehova, uthi: “Kufanele ngiyisondeze eduze into ebhaliwe lapho ngifunda. Kodwa lapho sengiyibeke endaweni efanele, ngifunda ngokushesha. Lokhu kubalulekile ukuze ngifunde iBhayibheli nsuku zonke.” Uyanezela: “Uma nginikeza izinkulumo emihlanganweni yethu yobuKristu, ngilungiselela kahle ukuze ngingalubheki njalo uhlaka. Ngiyajabula kakhulu ngokuthi INqabayokulinda ebhalwe ngokugqamile iyatholakala nangolimi lwakithi, isiYoruba.”

Uma umntwana enohlobo lobu-albino okuthiwa i-ocular, kungaba yinselele ukuya esikoleni. Abazali abathatha isinyathelo baye kuthisha noma abaphathi besikole kusenesikhathi bangathola usizo olusemqoka. Ngokwesibonelo, ezikoleni ezithile kukhona izincwadi ezinamakhasi anombala, ezibhalwe ngamagama amakhulu kanye namakhasethi. Ngokubambisana nabazali, othisha, nabaqondisi besikole, umntwana onalolu hlobo lobu-albino angaphumelela ezifundweni zesikole.

Izinselele Kwezenhlalo

Abantu abaningi abangama-albino bayafunda ukuphila nokulinganiselwa kwabo. Kodwa abaningi bakuthola kunzima ukubekezelela ukucwaswa emphakathini ngenxa yalesi simo. Lokhu kungaba yinselele ikakhulukazi kubantwana.

Ezingxenyeni ezithile zaseNtshonalanga Afrika, izingane ezingama-albino ziyagconwa noma zihlekwe ngenxa yebala lazo. Kwezinye izindawo ezikhuluma isiYoruba, zibizwa ngokuthi ama-“Afin,” igama elisho ukuthi “mubi.” Ngokuvamile, yizingane ezigconwa kakhulu kunabantu abadala. Nakuba abantu baseNtshonalanga Afrika bevame ukuchitha isikhathi ngaphandle, amanye ama-albino akhetha ukuhlala endlini. Lokhu kungenza kube lula ukuba umuntu azinyeze futhi azizwe engelutho. Yileyo ndlela uJohn ayezizwa ngayo kwaze kwaba yilapho efunda iqiniso leZwi likaNkulunkulu. Ngemva kokubhapathizwa kwakhe ngo-1974, umbono wakhe ngokuphila washintsha. UJohn wayevame ukuzihlukanisa ahlale ekhaya, kodwa waqaphela ukuthi unomthwalo wemfanelo wokuphuma ayoshumayela kwabanye ngethemba elimangalisayo ayelitholile. Uthi, “Isimo sabo esingokomoya sibucayi kakhulu kunenkinga yami.” Ingabe bakhona abamgconayo ensimini? UJohn uyachaza: “Kuyaqabukela ukuthi abathile abangasifuni nhlobo isigijimi seBhayibheli bangigcone ngokubukeka kwami. Lokhu akungikhathazi ngoba ngiyaqaphela ukuthi benza lokho ngenxa yesigijimi engisiphethe hhayi ngenxa yokubukeka kwami.”

Ukuphela Kobu-albino

Kuningi okuye kwashintsha eminyakeni yamuva nje ekwelapheni ubu-albino. Isayensi yezokwelapha iyakwazi ukunikeza usizo olukhulu kunanini ngaphambili. Amaqembu okusizana anezigungu zokucobelelana ngolwazi nokuthuthukisa indlela eqondwa ngayo le nkinga. Nokho ikhambi langempela alikho kubantu kodwa likuNkulunkulu.

Ubu-albino, njengazo zonke ezinye izinkinga, buwumphumela wokungapheleli bonke abantu abakuzuze kumuntu wokuqala, u-Adamu. (Genesise 3:17-19; Roma 5:12) Ngomhlatshelo wesihlengo kaJesu Kristu, maduzane uJehova uzobanika impilo ephelele bonke ababonisa ukholo. Yebo, nguYe “ophulukisa zonke izifo zakho.” (IHubo 103:3) Ngaleso sikhathi, ubu-albino buyobe bungasekho, ngoba wonke umuntu oyi-albino uyobona ukugcwaliseka kukaJobe 33:25: “Inyama yakhe mayibe ntsha kunasebusheni; makabuyele ezinsukwini zobungqabavu bobusha bakhe.”

[Imibhalo yaphansi]

[Amazwi acashunwe esihlokweni ekhasini 29]

“Isimo sabo esingokomoya sibucayi kakhulu kunenkinga yami.”—UJohn

[Ibhokisi ekhasini 28]

IZINHLOBO EZITHILE ZOBU-ALBINO

Izinhlobo eziyinhloko zobu-albino zihlanganisa ezilandelayo:

Okuthiwa i-oculocutaneous. Isikhumba, izinwele namehlo akunaso isakhi sombala i-melanin. Kunezinhlobonhlobo ezingaba ngu-20 zabo.

Okuthiwa i-ocular. Imiphumela yabo ibonakala emehlweni kuphela. Ngokuvamile isikhumba nezinwele kubukeka kahle.

Kunezinye izinhlobo eziningi zobu-albino ezingaziwa kakhulu. Ngokwesibonelo, olunye uhlobo luhlanganiswa nesifo i-Hermansky-Pudlak (HPS). Abantu abane-HPS balimala noma bophe kalula. Abantu abaningi basePuerto Rico banalolu hlobo lobu-albino, lapho kulinganiselwa khona ukuthi oyedwa kwabangu-1 800 unabo.