Yintoni i-albinism? Kutheni ulusu neenwele zijika zibe mthubi?

Ngaba wakha waphawula ukuba abanye abantu banesikhumba esimhlophe kakhulu kunye neenwele, ngamanye amaxesha zimhlophe? Kwanamehlo abo aluhlaza okwesibhakabhaka okanye amdaka. Kuluntu, ngamanye amaxesha sibabiza ngamagama ahlukeneyo aba bantu. Kodwa oku kwaziwa ngokwezonyango njengemeko ebizwa ngokuba yi-albinism. Abantu abaninzi bacinga ukuba esi sisifo. Kodwa eneneni, asisosifo, kwaye asisuleli. Ngoko ke, ngaba simele sikuqaphele oku namhlanje?

Yintoni kanye kanye i-Albinism?

Ngamafutshane, i-albinism yimeko yemfuza ebangelwa kukuncipha okanye ukulahleka ngokupheleleyo kwe- pigment melanin emizimbeni yethu.

Cinga nge-melanin njenge-"inki" yendalo emizimbeni yethu. Le yi-inki enika umbala kulusu lwethu, iinwele, namehlo . Umntu one-melanin eninzi unolusu olumnyama, iinwele, namehlo. Umntu one-melanin encinci unolusu olukhanyayo. Ngoko ke, umntu one-albinism uvelisa i-melanin encinci emzimbeni wakhe. Yiyo loo nto ulusu neenwele zakhe zimhlophe kangaka.

Le pigment, ebizwa ngokuba yi-melanin, inesinye isiciko esibalulekileyo ukongeza ekunikeni umbala. Oko kukuthi, inceda i-optic nerve ekwimehlo ethu ukuba ikhule kakuhle. Ke ngoko, abantu abaninzi abane-albinism banokuba nokuphazamiseka kokubona okuthile.

Ingaba kulungile ukubiza umntu ngokuthi 'yi-albino'?

Usenokuba ukhe weva abantu abanale meko bebizwa ngokuba yi-"albino." Kodwa njengoogqirha, thina kunye nabantu abaninzi abanale meko sikhetha ukubizwa ngokuba "ngumntu one-albinism." Kungenxa yokuba akufanelekanga ukubiza umntu ngemeko yakhe yempilo. Njengokuba ukubiza umntu onesifo seswekile ngokuthi "unesifo seswekile" kunokubiza "umntu onesifo seswekile" kunika loo mntu intlonipho.

Ngaba kukho iintlobo eziphambili ze-albinism?

Ewe, kukho iintlobo ezimbini eziphambili ze-albinism. Kwakhona, i-albinism inokwenzeka njengenxalenye yezinye izifo ezingaqhelekanga zemfuza. Masizijonge ngokwahlukeneyo ezi.

Ubu-albinism obunxulunyaniswa nezinye iimeko zonyango

Kunqabile kakhulu ukuba i-albinism inokwenzeka njengophawu lwezinye izifo zemfuza ezintsonkothileyo, nto leyo ethetha ukuba ukongeza kwi-albinism, zikwanazo neempawu ezichaphazela ezinye iinkqubo zomzimba.

• I-Hermansky-Pudlak syndrome (HPS): Ukongeza kwi-albinism, le meko inokubangela iingxaki zokujiya kwegazi, iingxaki zemiphunga, zezintso, okanye zamathumbu .
• I-Chediak-Higashi syndrome (CHS): Kule meko, i-albinism yenza amasosha omzimba abe buthathaka, nto leyo eyenza ukuba kube lula ukuba nezifo ezixhaphakileyo.

Ziziphi iimpawu eziphambili?

Imeko ye-albinism ichaphazela kakhulu inkangeleko yolusu, iinwele, namehlo, kunye nokubona.

Ulusu

Abantu abane-albinism badla ngokuba nolusu olukhanyayo kakhulu, kodwa oku kuxhomekeke kuhlobo lwe-albinism abanalo kunye nobungakanani be-melanin eveliswa yimizimba yabo.

• Uhlobo 1 lwe-OCA: Ulusu lumhlophe kakhulu, luphantse lube mhlophe.
• Iintlobo ze-OCA 2 kunye ne-4: Zisenokuba nolusu olumhlophe olukhrim.
• Uhlobo lwe-OCA 3: Ulusu lunokuba nombala obomvu-mdaka.

Iinwele

Umbala weenwele uyahluka ngokuxhomekeke kuhlobo lwe-albinism. Iinwele zabanye abantu zimhlophe ngokupheleleyo. Abanye banokuba neenwele ezimthubi okhanyayo, ezigolide, ezimdaka okhanyayo, okanye ezibomvu. Konke kuxhomekeke kubungakanani be-melanin emzimbeni.

Amehlo

Umbala wamehlo unokuba luhlaza okwesibhakabhaka, i-hazel, okanye i-brown. Nangona kunjalo, i-albinism ayichaphazeli ngqo umbala wamehlo kuphela, kodwa ikwachaphazela nokubona.

• Umbono ofipheleyo: Ukubona izinto ngendlela efipheleyo nengacacanga.
• Iimpazamo zokuBuyisa : Iimeko ezifuna iiglasi, ezinje ngokubona izinto ezikufutshane okanye ukubona izinto ezikude.
• I-Strabismus: Ubunzima bokugcina amehlo omabini ejonge kwicala elinye.
• I-Nystagmus: Iintshukumo zamehlo ezikhawulezayo nezingenakulawuleka .
• I-Photophobia: Amehlo aluhlaza okwesibhakabhaka kakhulu ukuba angabonwa xa ilanga likhanya okanye xa kukhanye kakhulu.
• Ukuqonda okuncinci kobunzulu: Ukungakwazi ukugweba ngokuchanekileyo umgama ukusuka kwizinto.

Kutheni oku kusenzeka? Ingaba le yinto ezuzwe njengelifa?

Ewe, i-albinism yimeko yemfuza ngokupheleleyo. Oku kuthetha ukuba ifunyanwa ngabazali kubantwana.

Kukho iijini ezininzi emzimbeni wethu ezinxulumene nokuveliswa kwe-melanin. Utshintsho kwezi jini lunokuphazamisa ukuveliswa kwe-melanin.

• I-Oculocutaneous albinism (OCA) izuzwa njengelifa kwi- autosomal recessive pattern. Ngamafutshane, ukuze umntwana abe nale meko, kufuneka azuze i-gene yemeko evela kumama noyise . Ukuba ngumzali omnye kuphela ozuza i-gene, umntwana akayi kuba neempawu. Kodwa uya kuba "ngumthwali" we-gene. Oku kuthetha ukuba ukuba badibana nomnye umthwali kwixesha elizayo, kukho amathuba angama-25% okuba umntwana wabo abe ne-albinism.

• I-Ocular albinism (OA) idla ngokuzuzwa njengelifa ngendlela 'edityaniswe ne-X' . Ngenxa yokuba idluliselwa kwi-chromosome ye-X, idla ngokubonakala kakhulu kumadoda.

Ifunyaniswa njani kwaye zeziphi iindlela zonyango?

Ukuchongwa

Ugqirha udla ngokuxilonga le meko ngokuthi:

• Xa kuhlolwa umzimba:Ulusu olukhanyayo, iinwele, kunye nombala wamehlo unokubonwa xa umntu ezalwa okanye kungekudala emva koko.
• Uvavanyo olupheleleyo lwamehlo: Ukujonga iimpawu ezinxulumene namehlo (ezifana ne-nystagmus kunye ne-strabismus).
• Uvavanyo lwe-DNA: Kwezinye iimeko, uvavanyo lwe-genetic lunokwenziwa ukuqinisekisa uhlobo oluthile lwe-albinism.

Unyango kunye nolawulo

Ekubeni esi sisifo semfuza, akukho nyango lunokuyinyanga ngokupheleleyo le meko ngokunyusa imveliso yomzimba ye-melanin. Nangona kunjalo, iingxaki ezinxulumene nale meko zinokulawulwa kakuhle kwaye ungaphila ubomi obusempilweni nobuqhelekileyo.

Kukho iindawo ezimbini eziphambili ekufuneka kugxilwe kuzo.

1. Ukhathalelo lolusu (kubaluleke kakhulu!)

• Ukuzikhusela elangeni: Kuphephe ukuvezwa elangeni kangangoko unako, ingakumbi phakathi kwentsimbi ye-11 kusasa ne-3 emva kwemini.
• Isikhuseli selanga: Sebenzisa isikhuseli selanga esine-SPF engama-30 nangaphezulu esikhusela kwimitha ye-UVA kunye ne-UVB xa uphuma ngaphandle . Buza ugqirha wakho ngolwazi oluthe kratya malunga noku.
• Impahla yokuzikhusela: Ziqhelise ukunxiba impahla enemikhono emide, iminqwazi, kunye neeglasi zelanga ezikhuselwe yi-UV.
• Ukuhlolwa kolusu rhoqo: Jonga ulusu lwakho rhoqo ukuze ubone amabala amatsha, iintsumpa, okanye utshintsho kumbala, ubungakanani, okanye imo. Bonana nogqirha ngoko nangoko ukuba ubona notshintsho oluncinci.

2. Ukukhusela amehlo

• Ukutyelela ugqirha wamehlo: Kubalulekile ukuba wonke umntu one-albinism abone ugqirha wamehlo rhoqo.
• Iiglasi zamehlo: Ukunxiba iiglasi ezifanelekileyo okanye iilensi zoqhagamshelwano ukulungisa iimpazamo zokuhombisa.
• Uncedo lokuphazamiseka kokubona: Izixhobo ezifana neelensi zokukhulisa zinokusetyenziselwa ukuphucula umbono.
• Utyando: Ngamanye amaxesha utyando lunokwenziwa ukulungisa i-strabismus.

Ukuba umntwana wakho une-albinism...

Kuqhelekile ukuba abazali bazive bebuhlungu kwaye besoyika xa befumanisa ukuba umntwana wabo une-albinism. Kodwa ngenkxaso efanelekileyo kunye nokuqonda, ungamnika umntwana wakho ubomi obungcono.

• Yazisa isikolo: Thetha nootitshala bomntwana wakho uze ubachazele imeko yakhe, ingakumbi ukukhubazeka kwakhe kokubona. Cela uncedo ngezinto ezinje ngokumhlalisa ngaphambili eklasini nokubanika iincwadi ezibhalwe ngamagama amakhulu.
• Nika umntwana wakho ukuzithemba: Ngenxa yokuba umntwana wakho ebonakala eyahlukileyo kwabanye, unokugculelwa kwaye axhatshazwe esikolweni nasekuhlaleni. Ngoko ke, thetha nomntwana wakho ngale nto ngokukhululekileyo kwasebuntwaneni. Mfundise ukuzithemba ukuba angakuxelela oko akucingayo.
• Yenza umkhwa wokusebenzisa i-sunscreen:Yenza kube ngumkhwa kusapho lonke ukusebenzisa i-sunscreen yonke imihla. Emva koko akuyi kuvakala ngathi yinto yomntwana nje.
• Bona ugqirha wakho rhoqo: Qiniseka ukuba umsa umntwana wakho rhoqo ukuze aye kuhlolwa ulusu namehlo.

Ukuphila ne-albinism kunokuba nzima. Kodwa khumbula, akuthinteli izakhono zomntu, ubukrelekrele bakhe, okanye amandla akhe okuphumelela ebomini. Ngolawulo olufanelekileyo nenkxaso, banokuphila ubomi obuphumelelayo nobonwabisayo njengaye nabani na.