ʻO nā mea āpau e pono ai ʻoe e ʻike e pili ana i ka albinism i nā keiki

He aha ka albinism?

ʻIke ʻia ka poʻe me ka albinism e ka ʻili maikaʻi a me ka lauoho. He a maʻi genetics i hoʻopilikia pinepine i ka ʻike. Pili ia ma kahi o 20,000 kanaka ma Palani.

He aha ke kumu o ka albinism?

ʻO ke kumu nui o ka albinism mai kahi kīnā hana melanin i ke kino o ka poe i hoopilikiaia. ʻO kāna hana ka pale ʻana i ka ʻili mai nā kukuna ultraviolet. Hiki nō hoʻi i nā maka ke komo ultraviolet. ʻO ia ka mea e wehewehe i ke kala o nā maka.

Ua hoʻoili ʻia ka albinism?

ʻO ka Albinism kekahi maʻi hiki ke lawe ʻia mai nā mākua mai o ka mea i loaʻa. Hiki ke hoʻoili ʻia ka gene i loko o ke keiki. 

Ocular albinism a me oculo-cutaneous albinism

Hoʻopili ke aloha i ka ʻili, akā i ka lauoho a me nā maka, me kahi ʻāpana o ka waihoʻoluʻu haʻahaʻa loa. Ke kumu a pilikia kino maka. Aia ma kahi o 5% ka nui o ka honua.

Ma muli o nā ʻāpana o ke kino i hoʻopilikia ʻia e ka albinism, hoʻololi ke ʻano. Pili wale ka ocular albinism i nā maka. Mai chromosome X a ua ʻaʻahu ʻia e nā wahine. ʻO kā lākou keiki kāne wale nō ka mea hiki ke hoʻopilikia.

Ke hoʻopilikia ka maʻi i nā wahi ʻē aʻe o ke kino (ʻili, lauoho, lauoho kino), ʻo ia ka oculocutaneous albinism (AOC). Hoʻokaʻawale ʻia e a pigmentation māmā loa a i ʻole ka nele o ka pigmentation ma nā maka, lauoho kino, lauoho a me ka ʻili.

He nani ka pilikia o ka maʻi hope akā hiki ke hoʻonui i ka pilikia o ka maʻi kanesa. Hiki ke hoʻopili ʻia ka oculocutaneous albinism me ke koko-immunological, pulmonary, digestive and neurological abnormalities.

E nānā i ka pūnaewele o ka Haute Autorité de Santé no ka wehewehe kikoʻī o nā hōʻailona o AOC.

He aha nā hopena o ka albinism? Nawaliwali ka maka

La maikaʻi ʻole ka ʻike maka ʻo ia kekahi o nā hōʻailona nui o ka albinism.

Hiki ke haʻahaʻa a koʻikoʻi. Ma waho aʻe o kahi maʻi maʻi e pili ana, paʻa mau kēia hemahema ʻike. He mea maʻamau ka ʻike kala. Hoʻomaikaʻi ʻia ka ʻike maka ma ka ʻike kokoke, kahi e hiki ai ke kula i ke kula nui.

Ma ke ʻano piha o ka albinism (AOC), lohi ka loaʻa ʻana o ke pēpē nā manaʻo hoʻohālikelike psychovisual. Ma nā ʻano piha ʻole, hiki ke hoʻemi ʻia kēia hemahema me ka makahiki.

Nā keiki me ka albinism: he aha ka nystagmus?

Le nystagmus congenital, Aia i loko o ka hapa nui o nā albinos, ʻaʻole pinepine i ka hānau ʻana, hiki ke ʻike ʻia i nā mahina mua ma hope o ka hānau ʻana, i ka wā o ka oʻo ʻana o ka fovea, kahi o ka retina kahi e ʻike pono ai nā kikoʻī. He oscillating motion involuntary, jerky oscillating motion o ka pōpō maka. Pili ka ʻike maka.

Hiki ke ʻike ʻia i ka wā o ka hōʻike hōʻike. Hiki ke hoʻokiʻekiʻe ʻia me ka ʻālohilohi a hoʻemi ʻia me ka hoʻohana ʻana i nā lens hoʻoponopono.

Albinism: he aha ka photophobia?

ʻO Photophobia kahi ʻike nui o nā maka i ka mālamalama. I ka albinism, puka mai ka photophobia mai ka hoʻemi ʻana i ka kānana māmā i ke kula kiʻekiʻe i ka hemahema melanin. Loaʻa ia i nā maʻi ʻē aʻe o ka retinal a i ʻole ocular pathologies e like me aniridia et l'achromatopsie.

Albinism: he aha nā pilikia ʻike, a i ʻole ametropia?

ʻAʻohe o lākou mau makahiki, pono e nānā ʻia nā maka o ka poʻe me ka albinism. ʻOiaʻiʻo, ka ametropia Loaʻa pinepine i kēia maʻi: strabismus, hyperopia, presbyopia, astigmatism.

Albinism: pehea ka pinepine o ia mea?

ʻO ka Albinism kahi maʻi i loaʻa ma ka honua holoʻokoʻa, akā kakaikahi loa ma ʻEulopa. Eia naʻe, ʻokoʻa ia mai ke ʻano a i ke ʻano a mai ka ʻāina a i ka ʻāina.

Wahi a ka HAS, ma kahi o 15% o nā maʻi albino ʻaʻole loaʻa ʻike molekala. Ke kumu ? ʻElua mau mea hiki: hiki ke loaʻa nā mutation ma nā wahi i ʻike ʻole ʻia o nā genes ʻike ʻia a ʻaʻole ʻike ʻia e nā ʻenehana kumu a i ʻole he mau genes ʻē aʻe ke kumu o ka albinism i kēia poʻe.

Albinism: he aha ke kākoʻo?

No ka ʻike, nānā a mālama i ka maʻi i loaʻa mai ka albinism, dermatologist, ophthalmologist, geneticist, ENT, hana pū. ʻO kā lākou kuleana ? E noi a hōʻoia a mālama lehulehu no nā maʻi me AOC.

Hoʻopaʻa ʻia nā keiki a me nā mākua i kēia maʻi i kahi loiloi honua (dermatological, ophthalmological and genetic) i hana ʻia e kēia mau kauka ʻokoʻa i ka wā o ka mālama ʻana i ka lā. Eia kekahi, pōmaikaʻi nā poʻe maʻi mai ka hoʻonaʻauao therapeutic e pili ana i ka albinism ma ka laulā a me ka AOC, ma ke ʻano.

Aia kahi ʻikepili lapaʻau a me genetic ma ka oculocutaneous albinism, no laila hiki ke hana ʻia ka ʻike ma ke kumu o kahi panel sequencing e ʻae ana i ka nānā ʻana o nā genes i ʻike ʻia e pili ana i ka oculocutaneous albinism.

Albinism: he aha ka lāʻau?

Aia ʻaʻohe lāʻau lapaʻau e hoʻomaha i ka albinism. He mea nui ka nānā ʻana i ka ophthalmological a me ka dermatological i mea e hoʻoponopono ai i nā hemahema ʻike i pili i ka maʻi.

No ka poʻe me ka albinism, pono ka pale ʻana i ka lā, i mea e pale aku ai i ka pilikia o ka maʻi maʻi ʻaʻai, ʻo ka ʻili a palupalu loa i nā kukuna UV. No laila, pono ka pale ʻana i ka ʻili a me nā maka i mua o ka lā. Pono e mālama ʻia: e noho ma ka malu, e ʻaʻahu i nā lole pale, nā pāpale, nā makaaniani, a hoʻohana 50+ index cream ma nā ʻili ʻili i ʻike ʻia.

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