He aha ka albinism? No ke aha e mae ai ka ʻili a me ka lauoho?

Ua ʻike anei ʻoe he ʻili keʻokeʻo loa ko kekahi poʻe a me ko lākou lauoho, i kekahi manawa keʻokeʻo? ʻO ko lākou mau maka he uliuli māmā a ʻeleʻele paha. I loko o ke kaiāulu, kapa mākou i kēia poʻe ma nā inoa like ʻole. Akā, ua ʻike ʻia kēia ma ke ʻano lapaʻau he ʻano i kapa ʻia ʻo albinism. Manaʻo ka poʻe he nui he maʻi kēia. Akā, ʻo ka ʻoiaʻiʻo, ʻaʻole ia he maʻi, a ʻaʻole ia he mea laha. No laila, pono anei kākou e makaʻala i kēia i kēia lā?

He aha maoli ka Albinism?

I ka ʻōlelo maʻalahi, ʻo ka albinism kahi maʻi genetic i hoʻokumu ʻia e ka emi ʻana a i ʻole ka nalowale loa ʻana o ka pigment melanin i loko o ko mākou kino.

E noʻonoʻo i ka melanin ma ke ʻano he "ʻīnika" kūlohelohe i loko o ko kākou kino. ʻO kēia ʻīnika ka mea e hāʻawi i ke kala i ko kākou ʻili, lauoho, a me nā maka . ʻO ka mea me ka melanin nui aʻe he ʻili ʻeleʻele, lauoho, a me nā maka. ʻO ka mea me ka melanin liʻiliʻi he ʻili māmā. No laila, ʻo ka mea me ka albinism he liʻiliʻi loa ka hana ʻana o ka melanin i loko o ko lākou kino. ʻO ia ke kumu i mae ai ko lākou ʻili a me ka lauoho.

ʻO kēia pigment, i kapa ʻia ʻo melanin, he hana koʻikoʻi ʻē aʻe kona ma waho aʻe o ka hāʻawi ʻana i ke kala. ʻO ia hoʻi, kōkua ia i ke aʻalolo optic i loko o ko kākou mau maka e ulu pono. No laila, nui ka poʻe me ka albinism e ʻike paha i kekahi ʻano o ka hemahema o ka ʻike.

He pololei anei ke kapa ʻana i kekahi he 'albino'?

Ua lohe paha ʻoe i nā kānaka me kēia maʻi i kapa ʻia ʻo "albino." Akā ma ke ʻano he mau kauka, makemake mākou a me nā poʻe he nui me ke ʻano e kapa ʻia ʻo "he kanaka me ka albinism." ʻO ia no ka mea ʻaʻole kūpono ke kapa ʻia kekahi ma ko lākou kūlana olakino. E like me ke kapa ʻana i kahi kanaka me ka maʻi diabetes "he diabetic" ma mua o "he diabetic" hāʻawi i kēlā kanaka i ka mahalo.

Aia kekahi mau ʻano nui o ka albinism?

ʻAe, aia ʻelua ʻano nui o ka albinism. Eia kekahi, hiki ke kū mai ka albinism ma ke ʻano he ʻāpana o kekahi mau maʻi genetic kakaʻikahi. E nānā kākou i kēia mau mea ma ke kaʻawale.

ʻO Albinism e pili ana me nā kūlana olakino ʻē aʻe

ʻAʻole pinepine loa, hiki i ka albinism ke ʻano he hiʻohiʻona o nā maʻi genetic paʻakikī ʻē aʻe, ʻo ia hoʻi, me ka albinism, loaʻa iā lākou nā hōʻailona e hoʻopilikia ai i nā ʻōnaehana kino ʻē aʻe.

• ʻO ka maʻi Hermansky-Pudlak (HPS): Ma waho aʻe o ka albinism, hiki i kēia kūlana ke hana i nā pilikia clotting koko, nā māmā, nā puʻupaʻa, a i ʻole nā ​​​​pilikia ʻōpū .
• ʻO ka maʻi Chediak-Higashi (CHS): Ma kēia kūlana, hoʻonāwaliwali ka albinism i ka ʻōnaehana pale o ke kino, e lilo ia i mea maʻalahi i nā maʻi pinepine.

He aha nā hōʻailona nui?

ʻO ke ʻano o ka albinism e hoʻopili nui i ke ʻano o ka ʻili, ka lauoho, a me nā maka, a me ka ʻike.

ʻIli

ʻO ka poʻe me ka albinism he ʻili keʻokeʻo loa ko lākou, akā pili kēia i ke ʻano o ka albinism a lākou a me ka nui o ka melanin i hana ʻia e ko lākou kino.

• ʻAno OCA 1: He keʻokeʻo loa ka ʻili, kokoke i keʻokeʻo.
• ʻAno OCA 2 a me 4: Loaʻa paha ka ʻili keʻokeʻo momona.
• ʻAno OCA 3: Hiki i ka ʻili ke lilo i ʻulaʻula-ʻeleʻele.

Lauoho

ʻOkoʻa nō hoʻi ke kala o ka lauoho ma muli o ke ʻano o ka albinism. He keʻokeʻo loa ka lauoho o kekahi poʻe. Hiki i kekahi ke loaʻa ka lauoho melemele māmā, gula, ʻeleʻele māmā, a ʻulaʻula paha. Aia ia i ka nui o ka melanin i loko o ke kino.

Nā maka

Hiki i ke kala o nā maka ke uliuli māmā, hazel, a ʻeleʻele paha. Eia nō naʻe, hoʻopilikia pololei ka albinism ʻaʻole wale i ke kala o nā maka, akā, i ka ʻike pū kekahi.

• ʻIke pōwehiwehi: ʻIke ʻana i nā mea ma ke ʻano pōwehiwehi a maopopo ʻole.
• Nā hewa refractive : Nā kūlana e pono ai nā aniani, e like me ka ʻike kokoke a i ʻole ka ʻike mamao.
• Strabismus: Paʻakikī ke nānā ʻana o nā maka ʻelua i ka ʻaoʻao like.
• Nystagmus: Nā neʻe wikiwiki a hiki ʻole ke kāohi i nā maka .
• Photophobia: Nā maka i lilo i polū loa e ʻike ai i ka lā a i ʻole ke kukui ʻālohilohi.
• Ka ʻike hohonu i hoʻemi ʻia: ʻAʻole hiki ke hoʻoholo pololei i ka mamao i nā mea.

No ke aha e hana ʻia ai kēia? He mea hoʻoilina anei kēia?

ʻAe, he maʻi hoʻoilina piha ka albinism. ʻO ke ʻano kēia, ua hoʻoilina ʻia mai nā mākua a i nā keiki.

Aia kekahi mau genes i loko o ko kākou kino e pili ana i ka hana ʻana o ka melanin. Hiki i nā ʻokoʻa o kēia mau genes ke hoʻopilikia i ka hana ʻana o ka melanin.

• Hoʻoilina ʻia ka Oculocutaneous albinism (OCA) ma ke ʻano autosomal recessive . I ka ʻōlelo maʻalahi, no ke keiki e loaʻa i ke ʻano, pono lākou e hoʻoilina i ka gene no ke ʻano mai ko lākou makuahine a me ko lākou makuakāne . Inā hoʻokahi makua wale nō e hoʻoilina i ka gene, ʻaʻole e loaʻa i ke keiki nā hōʻailona. Akā, e lilo lākou i "mea lawe" o ka gene. ʻO ke ʻano kēia, inā e pili lākou me kekahi mea lawe ʻē aʻe i ka wā e hiki mai ana, aia he 25% ka manawa e loaʻa ai i kā lākou keiki ka albinism.

• Hoʻoilina pinepine ʻia ka ocular albinism (OA) ma ke ʻano 'X-linked' . Ma muli o ka laha ʻana ma o ka chromosome X, ʻike pinepine ʻia i nā kāne.

Pehea e ʻike ʻia ai a he aha nā lāʻau lapaʻau?

Ka ʻike ʻana

ʻO ka maʻamau, ʻike ke kauka i kēia maʻi ma o:

• Ma ka hoʻokolokolo kino:Hiki ke ʻike ʻia ke kala o ka ʻili, ka lauoho, a me nā maka i ka wā hānau a i ʻole ma hope koke iho.
• He hoʻokolokolo maka piha: Ke nānā ʻana i nā hōʻailona pili i ka maka (e like me nystagmus a me strabismus).
• Ka hoʻāʻo DNA: I kekahi mau hihia, hiki ke hana i ka hoʻāʻo genetic e hōʻoia i ke ʻano kikoʻī o ka albinism.

Ka mālama ʻana a me ka hoʻokele ʻana

ʻOiai he maʻi hoʻoilina kēia, ʻaʻohe lāʻau e hiki ke ho'ōla piha i kēia maʻi ma ka hoʻonui ʻana i ka hana ʻana o ke kino i ka melanin. Eia nō naʻe, hiki ke mālama maikaʻi ʻia nā pilikia e pili ana i kēia maʻi a hiki iā ʻoe ke ola i kahi ola olakino a maʻamau.

ʻElua mau wahi nui e kālele ai.

1. Mālama ʻili (koʻikoʻi loa!)

• Ka palekana o ka lā: E hōʻalo i ka lā i ka hiki, ʻoiai ma waena o 11 a.m. a me 3 p.m.
• Pale Lā: E hoʻohana mau i ka pale lā me ka SPF o 30 a ʻoi aku paha e pale aku ai i nā kukuna UVA a me UVB ke hele ʻoe i waho . E nīnau i kāu kauka no ka ʻike hou aku e pili ana i kēia.
• Nā lole pale: E hoʻomaʻamaʻa i ke komo ʻana i nā lole lima lōʻihi, nā pāpale, a me nā aniani lā me ka pale UV.
• Nānā ʻili maʻamau: E nānā pinepine i kou ʻili no nā kiko hou, nā ʻōhū, a i ʻole nā ​​loli i ke kala, ka nui, a i ʻole ke ʻano. E ʻike koke i ke kauka inā ʻike ʻoe i kahi loli iki loa.

2. Pale maka

• Ke kipa ʻana i kahi kauka maka: He mea nui no nā mea āpau me ka albinism e ʻike pinepine i kahi kauka maka.
• Nā maka aniani: Ke komo ʻana i nā maka aniani kūpono a i ʻole nā ​​​​​​aniani hoʻopili e hoʻoponopono i nā hewa refractive.
• Nā mea kōkua no ka hemahema o ka ʻike: Hiki ke hoʻohana ʻia nā mea e like me nā aniani hoʻonui e hoʻomaikaʻi i ka ʻike.
• ʻoki kino: I kekahi manawa hiki ke hana ʻia ke ʻoki kino e hoʻoponopono i ka strabismus.

Inā he albinism kāu keiki ...

He mea maʻamau i nā mākua ke kaumaha a me ka makaʻu ke ʻike lākou ua loaʻa i kā lākou keiki ka albinism. Akā me ke kākoʻo kūpono a me ka ʻike, hiki iā ʻoe ke hāʻawi i kāu keiki i kahi ola maikaʻi aʻe.

• E hoʻomaopopo i ke kula: E kamaʻilio me nā kumu a kāu keiki a wehewehe i ko lākou kūlana, ʻoiai ko lākou hemahema o ka ʻike. E noi i ke kōkua me nā mea e like me ka hoʻonoho ʻana iā lākou ma ke alo o ka papa a me ka hāʻawi ʻana iā lākou i nā puke me ka paʻi nui.
• E hāʻawi i kāu keiki i ka hilinaʻi iā ia iho: No ka mea, ʻokoʻa ke ʻano o kāu keiki mai nā poʻe ʻē aʻe, hiki ke hoʻohenehene ʻia a hoʻoweliweli ʻia lākou ma ke kula a ma ke kaiāulu. No laila, e kamaʻilio ākea me kāu keiki e pili ana i kēia mai ka wā ʻōpiopio. E hoʻokomo i ka hilinaʻi iā lākou e hiki iā lākou ke haʻi iā ʻoe i ka mea ma ko lākou manaʻo.
• E hoʻohana i ka sunscreen i mea maʻamau:E hoʻomaʻamaʻa i ka ʻohana holoʻokoʻa e kau i ka sunscreen i kēlā me kēia lā. A laila ʻaʻole ia e like me he mea wale nō ia no ke keiki.
• E ʻike pinepine i kāu kauka: E hōʻoia e lawe i kāu keiki no nā nānā olakino maʻamau e pili ana i ka ʻili a me nā maka.

Hiki ke paʻakikī ke noho me ka albinism. Akā e hoʻomanaʻo, ʻaʻole ia e kaupalena i nā hiki o ke kanaka, ka naʻauao, a i ʻole ka hiki ke holomua i ke ola. Me ka hoʻokele kūpono a me ke kākoʻo, hiki iā lākou ke ola i kahi ola holomua a hauʻoli e like me nā mea ʻē aʻe.