He aha te albinism? He aha i mā ai te kiri me te makawe?

Kua kite koe i ētahi tāngata he kiri mā, he makawe mā, he mā hoki i ētahi wā? He kikorangi mārama, he parauri rānei ō rātou kanohi. I roto i te hapori, he rerekē ngā ingoa e karangatia ana ēnei tāngata. Engari e mōhiotia ana tēnei e te hauora he mate e kiia nei ko te albinism. He tokomaha te hunga e whakaaro ana he mate tēnei. Engari i te ao tūturu, ehara i te mate, ā, ehara i te mea hopuhopu. Nō reira, me mōhio tātou ki tēnei i ēnei rā?

He aha tonu te Albinism?

He whakarāpopototanga noa iho, ko te albinism he mate ira e puta mai ana i te hekenga, te ngaronga rānei o te tae melanin i roto i te tinana.

Whakaarohia te melanin hei "waituhi" tūturu i roto i ō tātou tinana. Ko tēnei waituhi te mea e homai ana i te tae ki ō tātou kiri, makawe, me ngā kanohi . Ko te tangata he nui ake te melanin he kiri, he makawe, me ngā kanohi pouri. Ko te tangata he iti ake te melanin he kiri mārama. Nō reira, ko te tangata he albinism he iti noa te hanga melanin i roto i tōna tinana. Koia te take he tino māwhero tōna kiri me ōna makawe.

He mahi nui anō tā tēnei tae, e kiia nei ko te melanin, hei tāpiri atu ki te whakarato tae. Arā, ka āwhina i te whanaketanga tika o te io whatu i roto i ō tātou kanohi. Nō reira, he maha ngā tāngata whai mate kiriuhi ka pāngia pea e te ngoikore o te tirohanga.

He tika te karanga i tētahi tangata he 'pōro'?

Tērā pea kua rongo koe i te hunga e pāngia ana e tēnei mate e te kupu "albino". Engari hei tākuta, ko mātou me te tini o te hunga e pāngia ana e tēnei mate e pai ake ana kia karangatia rātou ko "he tangata pāngia e te albinism." Nā te mea kāore e tika kia karangatia tētahi mā te āhua hauora o tōna tinana. Pērā i te karanga i tētahi tangata mate huka he "huka" kaua ko "he mate huka", ka hoatu he whakaute ki taua tangata.

He momo matua o te albinism?

Ae, e rua ngā momo matua o te albinism. Waihoki, ka puta te albinism hei wāhanga o ētahi mate ira onge. Me titiro motuhake tātou ki ēnei.

Te mate pāwera e pā ana ki ētahi atu mate hauora

He tino onge te puta mai o te mate pūkahukahu hei āhuatanga o ētahi atu mate ira matatini, arā, hei tāpiri atu ki te mate pūkahukahu, he tohu anō hoki kei roto e pā ana ki ētahi atu pūnaha tinana.

• Te mate Hermansky-Pudlak (HPS): Haunga te mate pūkahukahu, ka taea hoki e tēnei āhuatanga te whakararu i te toto totoka, ngā raruraru o te pukahukahu, te whatukuhu, te puku rānei.
• Te mate Chediak-Higashi (CHS): I tēnei āhua, ka ngoikore te pūnaha ārai mate o te tinana i te mate albinism, ka ngāwari ai te pangia e ngā mate .

He aha ngā tohu matua?

Ko te āhua o te kiri, te makawe, me ngā kanohi te nuinga o te pānga o te mate albinism, tae atu ki te tirohanga.

Kiri

He kiri mā tonu te hunga whai mate pāwera, engari e whakawhirinaki ana tēnei ki te momo mate pāwera kei a rātou me te nui o te melanin e whakaputaina ana e ō rātou tinana.

• Momo OCA 1: He tino mā te kiri, tata mā.
• Momo OCA 2 me te 4: Tērā pea he kiri mā, he kirimi.
• Momo OCA 3: Ka huri pea te kiri hei parauri-whero.

Makawe

He rerekē anō te tae o te makawe i runga i te momo albinism. He mā katoa te makawe o ētahi tāngata. Ko ētahi he kōwhai mārama, he koura, he parauri mārama, he whero rānei te makawe. Kei te nui o te melanin i roto i te tinana te tikanga.

Ngā kanohi

Ka taea te tae o ngā kanohi te kikorangi mārama, te parauri parauri, te parauri rānei. Heoi, kāore te mate pāwera e pā tika ana ki te tae o ngā kanohi anake, engari ki te tirohanga anō hoki.

• Te tirohanga pōuri: Te kite i ngā mea i te huarahi pōuri, kore mārama.
• Ngā Hapa Tirotiro : Ngā āhuatanga e hiahiatia ai he mōhiti, pērā i te tirohanga tata, te tirohanga tawhiti rānei.
• Matapōkere: He uaua ki te pupuri i ngā kanohi e rua kia titiro ki te huarahi kotahi.
• Nystagmus: Ngā nekehanga kanohi tere, kore e taea te whakahaere .
• Te mataku i te hihi o te rā: Ngā kanohi ka kikorangi rawa, ā, kāore e taea te kite i te rā, i te māramatanga rānei.
• Te iti o te kite i te hohonu: Te kore e taea te aromatawai tika i te tawhiti ki ngā mea.

He aha tēnei ka tupu ai? He mea tuku iho tēnei?

Ae, he mate ira tūturu te mate pāwera. Ko te tikanga he mea tuku iho mai i ngā mātua ki ngā tamariki.

He maha ngā ira kei roto i tō tātou tinana e pā ana ki te hanga melanin. Ka taea e ngā rerekētanga o ēnei ira te whakararu i te hanga melanin.

• Ko te mate kiriuhi o te kiriuhi o te mata (OCA) ka tukuna iho i roto i te tauira autosomal recessive . Ki te kī ngāwari, kia pāngia ai te tamaiti e te mate, me riro i a ia te ira mō te mate mai i tōna whaea me tōna pāpā . Mēnā ko tētahi mātua anake ka riro i a ia te ira, e kore te tamaiti e pāngia e ngā tohu. Engari ko ia te "kaikawe" o te ira. Ko te tikanga tēnei, ki te moe tahi rāua me tētahi atu kaikawe ā muri ake nei, e 25% te tūponotanga ka pāngia tā rāua tamaiti e te mate kiriuhi.

• Ko te mate kiriuhi kanohi (OA) ka tukuna iho i roto i te tauira 'X-linked' . Nā te mea ka tukuna mā te ira X, ka kitea pinepine i roto i ngā tāne.

Me pēhea te tautuhi i tōna mate, ā, he aha ngā maimoatanga?

Te tautuhi

Ko te tikanga ka tātaritangahia tēnei mate e te tākuta mā te:

• I te whakamātautau tinana:Ka taea te kite i te tae mārama o te kiri, te makawe, me ngā kanohi i te whānautanga mai, i muri tata mai rānei.
• He whakamātautau kanohi katoa: Te tirotiro mō ngā tohu e pā ana ki te kanohi (pēnei i te nystagmus me te strabismus).
• Whakamātautau DNA: I ētahi wā, ka taea te whakamātautau ira hei whakaū i te momo albinism motuhake.

Te maimoatanga me te whakahaere

I te mea he mate ira tēnei, kāore he maimoatanga e taea ai te whakaora katoa i tēnei mate mā te whakanui ake i te hanga melanin a te tinana. Heoi, ka taea te whakahaere pai i ngā raruraru e pā ana ki tēnei mate, ā, ka taea e koe te noho hauora, noho noa.

E rua ngā wāhanga matua hei arotahi māu.

1. Te tiaki kiri (he mea tino nui!)

• Tiaki i te rā: Āta karohia te whitinga o te rā i ngā wā katoa e taea ana, inā koa i waenga i te 11 i te ata me te 3 i te ahiahi.
• Parenga rā: Whakamahia tonu he parenga rā me te SPF o te 30, neke atu rānei, hei tiaki i a koe mai i ngā hihi UVA me UVB ina haere koe ki waho . Pātai atu ki tō tākuta mō ētahi atu kōrero mō tēnei.
• Kākahu tiaki: Me mau i ngā kākahu ringaringa roa, ngā pōtae, me ngā mōhiti kanohi he ārai UV.
• Tirotiro kiri auau: Tirohia tō kiri i ia wā mō ngā ira hou, ngā kōroke, ngā panoni tae, te rahi, te āhua rānei. Tirohia tonutia te tākuta mēnā ka kite koe i tētahi panoni iti noa iho.

2. Tiaki kanohi

• Te toro atu ki tētahi tākuta kanohi: He mea nui kia toro atu te hunga mate kiriuhi ki tētahi tākuta kanohi i ia wā, i ia wā.
• Mōhiti Tirotiro: Me mau mōhiti, me ngā karaihe whakapā rānei e tika ana hei whakatika i ngā hapa tirohanga.
• Āwhina mō te ngoikore o te tirohanga: Ka taea te whakamahi i ngā taputapu pēnei i ngā karāhe whakanui hei whakapai ake i te tirohanga.
• Pokanga: I ētahi wā ka taea te mahi pokanga hei whakatika i te strabismus.

Mena he mate pāwera tō tamaiti...

He mea noa ki ngā mātua te pōuri me te mataku ina rongo rātou he mate pāwera tā rātou tamaiti. Engari mā te tautoko me te mōhio tika, ka taea e koe te hoatu ki tāu tamaiti he oranga pai ake.

• Whakamōhio atu ki te kura: Kōrero ki ngā kaiako o tāu tamaiti, me te whakamārama i tōna āhua, inā koa tōna ngoikore ki te tirohanga. Tonoa he āwhina mō ngā mea pēnei i te whakanoho i a ia ki mua o te akomanga me te whakarato pukapuka he nui te tānga.
• Hoatu te māia ki tāu tamaiti: Nā te mea he rerekē te āhua o tāu tamaiti i ētahi atu, tera pea ka whakatoihia, ka tukinotia hoki rātou i te kura me te hapori. Nō reira, kōrerotia tēnei ki tāu tamaiti mai i te tamarikitanga. Whakatōkia te māia ki roto i a rātou ka taea e rātou te kōrero ki a koe i ngā mea kei roto i ō rātou hinengaro.
• Whakamahia te hinu ārai rā hei tikanga:Me whakamahi te whānau katoa i te hinu ārai rā i ia rā, i ia rā, kia kore ai e rite ki te mea mā te tamaiti anake.
• Tirohia tō tākuta i ia wā: Kia mahara ki te kawe i tāu tamaiti ki ngā tirotiro hauora mō te kiri me ngā kanohi.

He uaua te noho me te mate pāwera. Engari kia maumahara, kāore e whakawhāiti i ngā pūkenga, i te hinengaro, i te kaha rānei o te tangata ki te angitu i te ao. Mēnā he tika te whakahaere me te tautoko, ka taea e rātou te noho angitu, te harikoa hoki, pērā i te tangata katoa.