Wake waphawula abantu abanesikhumba nezinwele ezimpunga noma ezimhlophe kakhulu, ngezinye izikhathi abanamehlo aluhlaza okwesibhakabhaka noma ansundu? Umphakathi uvame ukubabiza ngamagama ahlukahlukene, kodwa ngokwezokwelapha, lesi simo saziwa ngokuthi yi-Albinism . Abaningi bakholelwa ngephutha ukuthi kuyisifo, kodwa empeleni, akusona isifo, futhi asithelelani. Ingabe singafunda okwengeziwe ngokuthi lokhu kusho ukuthini ngempela?
Kuyini ngempela ukuba yi-Albinism?
Kalula nje, i-Albinism yisimo sofuzo esibangelwa ukuncipha noma ukungabikho ngokuphelele kokukhiqizwa kwe-pigment ebizwa ngokuthi i-melanin ( i-melanin ).
Cabanga nge-melanin “njengoyinki” wemvelo womzimba wakho. Lo mbala unikeza umbala esikhumbeni sakho, ezinweleni nasemahlweni akho . Abantu abane-melanin eningi banezici ezimnyama, kuyilapho labo abane-albinism encane benemibala ekhanyayo. Kubantu abane-Albinism, ukukhiqizwa kwe-melanin kuncane kakhulu, yingakho isikhumba nezinwele zabo zibonakala ziphaphathekile kangaka.
Ngaphandle kokunikeza umbala, i-melanin idlala indima ebalulekile ekuthuthukisweni okufanele kwezinzwa zamehlo akho. Ngenxa yalokhu, abantu abaningi abane-Albinism babhekana nokukhubazeka okuthile kokubona.
Okubaluleke kakhulu, khumbula ukuthi i-Albinism ayisona isifo; yisimo sofuzo esikhona kusukela ekuzalweni futhi asinakudluliselwa kwabanye.
Ingabe kulungile ukubiza umuntu ngokuthi 'u-albino'?
Kungenzeka ukuthi uke wezwa abantu abanalesi simo bebizwa ngokuthi “i-albino.” Kodwa-ke, njengochwepheshe bezokwelapha, thina kanye nabantu abaningi abanalesi simo sikhetha igama elithi “umuntu one-albinism.” Lokhu kungenxa yokuthi akukaze kube nenhlonipho ukuchaza umuntu ngesimo sakhe sezokwelapha kuphela. Njengoba nje sibhekisela kumuntu onesifo sikashukela ngokuthi “umuntu onesifo sikashukela” esikhundleni selebula, le ndlela ibonisa inhlonipho kumuntu ngamunye.
Ingabe kunezinhlobo ezahlukene zobu-Albinism?
Yebo, kunezinhlobo ezimbili eziyinhloko ze-Albinism. Ngaphezu kwalokho, izici ze-Albinism zingabonakala njengengxenye yezifo ezingavamile zofuzo. Ake sibheke lezi ngokwehlukana.
| Uhlobo Lobu-Albinism | Incazelo |
|---|---|
| I-Oculocutaneous Albinism (OCA) | Lolu uhlobo oluvame kakhulu. Igama elithi “Oculo” libhekisela emehlweni, kanti elithi “Cutaneous” libhekisela esikhumbeni. Njengoba igama lisikisela, lithinta isikhumba, izinwele, namehlo . Kunezinhlobo ezingaba yisikhombisa ze-OCA, futhi kuye ngohlobo, izinwele nombala wesikhumba kungahluka kusukela komhlophe kuya konsundu okhanyayo. |
| I-Ocular Albinism (OA) | Lokhu akuvamile kakhulu kune-OCA. Kuthinta kakhulu amehlo kuphela. Akukho mthelela omkhulu embala wesikhumba kanye nezinwele, okungase kubonakale kufana nokwamalungu omndeni noma kube mncane kancane. |
Ubu-albinism obuhambisana nezinye izimo
Ezimweni ezingavamile kakhulu, i-Albinism ingaba yisici esisodwa sezimpawu zofuzo eziyinkimbinkimbi kakhulu, okusho ukuthi nezinye izinhlelo zomzimba nazo zingathinteka:
- I-Hermansky-Pudlak syndrome (HPS): Ngaphezu kwe-albinism, lokhu kungabandakanya izinkinga zokujiya kwegazi, noma izinkinga zamaphaphu, izinso, noma amathumbu .
- I-Chediak-Higashi syndrome (CHS): Lesi simo sihilela ubu-albinism kanye nesistimu yomzimba ebuthaka, okuholela engcupheni enkulu yokutheleleka okuphindaphindiwe .
Yiziphi izimpawu eziyinhloko?
Ubu-albinism buthinta kakhulu ukubukeka kwesikhumba sakho, izinwele, namehlo, kanye nokubona kwakho.
Isikhumba
Isikhumba somuntu one-Albinism sivame ukuba mhlophe kakhulu, yize lokhu kuncike ohlotsheni oluthile kanye nenani le-melanin elikhiqizwayo.
- I-OCA Uhlobo 1: Isikhumba simhlophe kakhulu, ngokuvamile simhlophe.
- Uhlobo 2 no-4 lwe-OCA: Isikhumba singase sibonakale simhlophe ngokhilimu.
- Uhlobo 3 lwe-OCA: Isikhumba singase sibe nombala obomvu onsundu.
Inothi Elibalulekile: I-Melanin isebenza njengesivikelo selanga semvelo somzimba wakho ( isivikelo selanga ) , ikuvikela emisebeni ye-UV eyingozi. Ngenxa yokuthi amazinga e-melanin aphansi, abantu abane-Albinism basha kalula. Ngenxa yalokho, ingozi yomdlavuza wesikhumba iphakeme kakhulu kunesilinganiso.
Izinwele
Umbala wezinwele uyahlukahluka kuye ngohlobo lwe-Albinism. Abanye abantu bangase babe nezinwele ezimhlophe ngokuphelele, kanti abanye bangase babe nombala ophuzi okhanyayo, onsundu okhanyayo, onsundu okhanyayo, noma obomvu, konke kuye ngokuthi kukhiqizwa i-melanin engakanani.
Amehlo
Umbala wamehlo ungahluka kusukela koluhlaza okwesibhakabhaka kuya konsundu okhanyayo. Kodwa-ke, i-Albinism ayithinti nje umbala kuphela; ithinta ngqo umbono:
- Ukubona okufiphele: Ubunzima bokubona izinto ngokucacile.
- Amaphutha Okubheka ( Amaphutha Okubheka ): Izimo ezinjengokubona eduze noma ukubona kude okudinga amalensi okulungisa.
- I-Strabismus (amehlo ahlanganisiwe): Ubunzima bokuhlela amehlo womabili ngesikhathi esisodwa.
- I-Nystagmus: Ukunyakaza kwamehlo okusheshayo nokungahleliwe.
- Ukwesaba i-Photophobia: Ukuzwela kakhulu elangeni noma ekukhanyeni okukhanyayo.
- Ukubona okujulile okuncishisiwe: Ubunzima bokulinganisa ibanga phakathi kwezinto ngokunembile.
Kungani lokhu kwenzeka? Ingabe kuyifa?
Yebo, ubu-Albinism buyisifo esibangelwa ufuzo kuphela , okusho ukuthi sizuzwe njengefa kubazali kubantwana babo.
Imizimba yethu inezakhi zofuzo eziningana ezibangela ukukhiqizwa kwe-melanin. Ukwehluka noma ukuguquka kwalezi zakhi zofuzo ezithile yikona okuphazamisa ukukhiqizwa okuvamile kwe-melanin.
- I-Oculocutaneous albinism (OCA) izuzwa ngephethini 'ye-autosomal recessive' . Kalula nje, ukuze ingane ibe nalesi simo, kumele izuze i-gene efanele kubazali bobabili . Uma ingane izuza i-gene kumzali oyedwa kuphela, ngeke ibonise izimpawu; nokho, iba "ngumthwali." Esikhathini esizayo, uma inengane enomunye umthwali, kunethuba elingu-25% lokuthi ingane yayo izoba ne-albinism.
- I-ocular albinism (OA) ivame ukutholwa njengefa ku- 'X-linked'iphethini. Ngenxa yokuthi lokhu kuhilela i-chromosome X, lesi simo sithinta kakhulu abesilisa.
Kuhlonzwa futhi kuphathwa kanjani?
Ukuxilongwa
Udokotela wakho uvame ukuhlonza lesi simo ngokusebenzisa:
- Ukuhlolwa Komzimba: Ukukhanya kwesikhumba, izinwele namehlo kuvame ukubonakala lapho kuzalwa noma ngokushesha ngemva kwalokho.
- Ukuhlolwa Kwamehlo Okuphelele: Ukuhlola izimo ezithile zamehlo (njenge-nystagmus noma i-strabismus).
- Ukuhlolwa kwe-DNA: Kwezinye izimo, ukuhlolwa kwezakhi zofuzo kungenziwa ukuqinisekisa uhlobo oluthile lwe-albinism.
Ukwelashwa Nokuphathwa
Ngenxa yokuthi lesi yisimo sofuzo, okwamanje asikho ikhambi lokwandisa ukukhiqizwa kwe-melanin emzimbeni. Kodwa-ke, ungaphila impilo enempilo nejwayelekile ngokuphatha ngempumelelo izinselele ezihambisana naso.
Kunezindawo ezimbili eziyinhloko okugxilwe kuzo.
1. Ukunakekelwa Kwesikhumba (Okubalulekile!)
- Ukuvikelwa Elangeni: Gwema ukukhanya kwelanga okuqondile nokunamandla ngangokunokwenzeka, ikakhulukazi phakathi kuka-11:00 AM no-3:00 PM.
- Isikrini Sokuvikela Ilanga: Nsuku zonke, noma nini lapho uphuma ngaphandle, faka isivikelo selanga esine-SPF engama-30 noma ngaphezulu esinikeza isivikelo emisebeni ye-UVA kanye ne-UVB. Xhumana nodokotela wakho ukuze uthole izincomo ezenzelwe wena.
- Izingubo Zokuvikela: Zenze umkhuba ukugqoka izingubo ezinemikhono emide, izigqoko, nezibuko zelanga ezinezivikelo ze-UV.
- Ukuhlolwa Kwesikhumba Okuvamile: Hlola isikhumba sakho njalo ukuze uthole amabala amasha, ama-moles, noma izinguquko embala, usayizi, noma ukuma kwalezo ezikhona. Uma ubona noma yiziphi izinguquko, bona udokotela ngokushesha.
2. Ukunakekelwa Kwamehlo
- Ukuhlolwa Kwamehlo Okuvamile: Kubalulekile ukuthi wonke umuntu one-albino abone udokotela wamehlo njalo.
- Amalensi Okulungisa: Gqoka izibuko noma amalensi okuxhumana afanele ukuze ulungise amaphutha okubuyisa ukukhanya.
- Izinsiza Zokubona: Sebenzisa amathuluzi afana namalensi okukhulisa ukuze usize ekukhanyeni kokubona.
- Ukuhlinzwa: Kwezinye izimo, ukuhlinzwa kungenziwa ukuze kulungiswe ukuhambisana kwamehlo (strabismus).
Uma ingane yakho ine-albinism…
Kungokwemvelo ngabazali ukuzizwa bekhathazekile noma bekhathazekile lapho bezwa ukuthi ingane yabo ine-albino. Kodwa-ke, ngokusekelwa nolwazi olufanele, unganikeza ingane yakho impilo emangalisayo.
- Yazisa Isikole: Xoxa ngesimo sengane yakho nothisha bayo, ikakhulukazi mayelana nokukhubazeka kokubona. Cela izindawo zokuhlala njengezihlalo ezimigqeni engaphambili noma izincwadi ezibhalwe ngombhalo omkhulu.
- Yakha Ukuzethemba: Ngenxa yokuthi ingane yakho ingase ibukeke ihlukile, ingase ibhekane nokugconwa noma ukuxhashazwa. Khuluma nayo ngokukhululekile kusukela isencane futhi udale indawo ephephile lapho izizwa ikhululekile khona ukwabelana nawe ngemizwa yayo.
- Yenza Ukusetshenziswa Kwesivikelo Selanga Kube Yinjwayelo: Yenza ukugqoka isivikelo selanga kube umkhuba womndeni ukuze ingane yakho ingazizwa ikhethekile.
- Ukulandelela Okuvamile: Qinisekisa ukuthi ingane yakho igcina yonke imihlangano yesikhumba neyamehlo ehleliwe.
Ukuphila ne-albinism kungaba yinselele, kodwa khumbula: akukuthinti ukuhlakanipha komuntu, amakhono akhe, noma ikhono lakhe lokuphumelela. Ngokuphathwa okufanele kanye nendawo esekelayo, ingane yakho ingaphila impilo ephumelelayo negculisayo njenganoma ubani omunye.
Umlayezo Wokuya Nawe Ekhaya
- Ubu-albinism akusona isifo noma isimo esithathelwanayo; kuyisici sofuzo esizuzwa njengefa.
- Kubangelwa ukwehla kokukhiqizwa kwe-melanin.
- Kuthinta ukuguquka kwesikhumba, izinwele namehlo, futhi kungathinta nombono.
- Ukuvikela isikhumba sakho elangeni kubalulekile. Ukusebenzisa kahle isivikelo selanga kanye nezingubo zokuzivikela kunganciphisa kakhulu ingozi yomdlavuza wesikhumba.
- Ukuhlolwa kwamehlo njalo kuyimpoqo.
- Ngokuphathwa nokusekelwa okufanele, abantu abane-albino bangaphila impilo egcwele, enempilo, nephumelelayo.
Ubu-Albinism, i-Melanin, Izimo zesikhumba, Umbono, Izinkinga zofuzo, Isikrini selanga, Umdlavuza wesikhumba
