Kua kite koe i ētahi tāngata he kiri mā, he makawe mā rānei, ā, i ētahi wā he kikorangi mārama, he parauri rānei ō rātou kanohi? He maha ngā ingoa e tapaina ana e te hapori mō rātou, engari i roto i te rongoā, e mōhiotia ana tēnei mate ko te Albinism . He tokomaha e whakapono hē ana he mate tēnei, engari ko te mea pono, ehara i te mate, ehara hoki i te mea hopuhopu. Me ako atu tātou mō te tikanga o tēnei?
He aha tonu te Albinism?
He whakarāpopototanga noa iho, ko te mate pāwera he mate ira i puta mai i te whakaiti, te kore rānei o te hanga o te tae e kiia nei ko te melanin ( melanin ).
Whakaarohia te melanin hei "waituhi" tūturu o tō tinana. Mā tēnei tae ka hoatu he tae ki tō kiri, makawe, me ō kanohi . Ko te hunga he nui ake te melanin he āhua pōuri ake, ko te hunga he iti ake he āhua mārama ake. Mō te hunga whai mate pāwera, he iti noa iho te hanga melanin, koia te take he mā te kiri me te makawe.
Haunga te whakarato tae, he mea nui te mahi a te melanin ki te whanaketanga tika o ngā io whatu i roto i ō kanohi. Nā tēnei, he maha ngā tāngata whai mate Albinism e pāngia ana e ētahi ngoikoretanga tirohanga.
Ko te mea nui, kia maumahara ehara te mate pāwera i te mate; he mate ira e noho mai ana i te whānautanga, ā, e kore e taea te tuku atu ki ētahi atu.
He tika te kī he 'puru' te tangata?
Tērā pea kua rongo koe i te hunga e pāngia ana e tēnei mate e kiia ana he "tangata mate pūkahukahu." Heoi, hei tohunga hauora, ko mātou me te tini o te hunga e pāngia ana e tēnei mate e pai ake ana ki te kupu "he tangata mate pūkahukahu." Nā te mea ehara i te mea whakaute te tautuhi i tētahi tangata mā tōna āhua hauora anake. Pērā i tā mātou kī atu ki tētahi tangata mate huka he "tangata mate huka" kaua ki tētahi tapanga, ko tēnei huarahi e whakaatu ana i te whakaute ki te tangata takitahi.
He rerekē ngā momo Albinism?
Ae, e rua ngā momo matua o te mate pāwera. Hei tāpiri, ka puta pea ngā āhuatanga o te mate pāwera hei wāhanga o ngā mate ira onge. Me titiro motuhake tātou ki ēnei.
| Momo Albinism | Whakaahuatanga |
|---|---|
| Te Matepukupuku Kanohi (OCA) | Koinei te momo tino noa. Ko te "Oculo" e pā ana ki ngā kanohi, ā, ko te "Cutaneous" e pā ana ki te kiri. E ai ki te ingoa, ka pā ki te kiri, te makawe, me ngā kanohi . E whitu pea ngā momo OCA, ā, i runga i te momo, ka rerekē te tae o te makawe me te kiri mai i te mā ki te parauri mārama. |
| Te Mate Pūkahukahu Kanohi (OA) | He tino onge ake tēnei i te OCA. Ko ngā kanohi anake te mea ka pā ki tēnei mate. He iti noa te pānga ki te tae o te kiri me te makawe, ā, tera pea ka rite te āhua ki ērā o te whānau, ka paku mā noa iho rānei. |
Te mate pāwera e pā ana ki ētahi atu āhuatanga
I ētahi wā tino onge, ka noho te mate pāwera hei āhuatanga o ngā mate ira matatini ake, arā, ka pāngia pea ētahi atu pūnaha tinana:
- Te mate Hermansky-Pudlak (HPS): Haunga te mate pūkahukahu, ka uru pea tēnei ki ngā raruraru toto totoka, ngā mate pūkahukahu, ngā mate whatukuhu, ngā mate puku rānei.
- Te mate Chediak-Higashi (CHS): Kei roto i tēnei āhuatanga te mate pāwera me te ngoikore o te pūnaha ārai mate , ka nui ake te tūponotanga o ngā mate urutā .
He aha ngā tohu matua?
Ko te mate pāwera te mea nui ka pā ki te āhua o tō kiri, makawe, me ō kanohi, tae atu ki tō tirohanga.
Kiri
He tino mā te kiri o te tangata whai mate pāwera, engari e whakawhirinaki ana tēnei ki te momo me te nui o te melanin e whakaputaina ana.
- Momo OCA 1: He tino mā te kiri, he mā te nuinga o te wā.
- Momo OCA 2 me te 4: Tērā pea he mā kirīmi te āhua o te kiri.
- Momo OCA 3: Ka huri pea te kiri hei parauri-whero.
He Tuhipoka Hira: Ko te melanin te pare ārai kiri tūturu o tō tinana, hei tiaki i a koe mai i ngā hihi UV kino. Nā te iti o ngā taumata melanin, ka tere te mura o te kiri o te hunga whai mate kiri kiri. Nō reira, he nui ake te mōrearea o te mate pukupuku kiri i te toharite.
Makawe
He rerekē te tae o te makawe i runga i te momo Albinism. Ko ētahi tāngata he mā katoa ō rātou makawe, ko ētahi he kōwhai mārama, he kōwhai māwhero, he parauri mārama, he whero rānei ō rātou tae, i runga katoa i te nui o te melanin e whakaputaina ana.
Ngā kanohi
Ka rerekē te tae o ngā kanohi mai i te kikorangi mārama ki te parauri mārama. Heoi, ehara i te mea ko te tae anake te pānga o te mate pāwera; ka pā tika hoki ki te tirohanga:
- Te tirohanga pōuri: Te uaua ki te kite mārama i ngā mea.
- Ngā Hapa Whakaata ( Ngā Hapa Whakaata ): Ngā āhuatanga pēnei i te tirohanga tata, te tirohanga tawhiti rānei e hiahiatia ana he karāhe whakatikatika.
- Matapōkere (kanohi whiti): He uaua ki te whakataurite i ngā kanohi e rua i te wā kotahi.
- Nystagmus: Te nekehanga tere, kore e āta whakaarohia o ngā kanohi.
- Te mataku i te hihi o te rā: Te tino aro ki te hihi o te rā, ki ngā rama kanapa rānei.
- Te iti o te kite i te hohonu: Te uaua ki te ine tika i te tawhiti i waenga i ngā mea.
He aha tēnei ka tupu ai? He mea tuku iho?
Ae, he mate ira tūturu te mate pāwera, arā, he mea tuku iho mai i ngā mātua ki ā rātou tamariki.
He maha ngā ira kei roto i ō tātou tinana e kawenga ana mō te hanga melanin. Ko ngā rerekētanga, ngā whakarerekētanga rānei o ēnei ira motuhake, koinei ngā mea e whakararuraru ana i te hanga noa o te melanin.
- Ko te mate kiri mārō (OCA) ka tukuna iho mā te tauira 'autosomal recessive' . He māmā noa iho, kia pāngia ai te tamaiti e tēnei mate, me riro i a ia te ira e tika ana mai i ngā mātua e rua . Mēnā ka riro i te tamaiti te ira mai i te mātua kotahi anake, kāore ia e whakaatu i ngā tohu; heoi, ka noho ia hei "kaikawe." Ā muri ake nei, mēnā he tamaiti tā rātou me tētahi atu kaikawe, e 25% te tūponotanga ka pāngia tā rātou tamaiti e te mate kiri mārō.
- Ko te mate pukupuku kanohi (OA) ka tukuna iho i roto i te mate 'X-linked'tauira. Nā te mea e pā ana tēnei ki te ira X, ko ngā tāne te nuinga o te wā e pā ana ki tēnei mate.
Me pēhea te tautuhi me te whakahaere?
Tātaritanga
Ko te tikanga ka tautuhia e tō tākuta tēnei āhuatanga mā roto i:
- Whakamātautau Tinana: Ka kitea te tae mārama o te kiri, te makawe, me ngā kanohi i te whānautanga mai, i muri tata mai rānei.
- Whakamātautau Kanohi Whānui: Te aromatawai i ngā āhuatanga kanohi motuhake (pēnei i te nystagmus, te strabismus rānei).
- Whakamātautau DNA: I ētahi wā, ka taea te whakahaere whakamātautau ira hei whakaū i te momo albinism motuhake.
Te Maimoatanga me te Whakahaere
Nā te mea he mate ira tēnei, kāore he rongoā hei whakanui ake i te hanga melanin i roto i te tinana i tēnei wā . Heoi, ka taea e koe te noho hauora, noho noa mā te whakahaere tika i ngā wero e pā ana.
E rua ngā wāhanga matua e arotahi ana.
1. Te Tiaki Kiri (He mea nui!)
- Te Tiaki Rā: Āta karohia te whiti tika o te rā, i ngā wā katoa e taea ana, inā koa i waenga i te 11:00 i te ata me te 3:00 i te ahiahi.
- Parenga rā: I ia rā, i ngā wā katoa e haere ana koe ki waho, pania he parenga rā whānui-whānui me te SPF o te 30, neke atu rānei, hei tiaki i a koe mai i ngā hihi UVA me UVB. Kōrero ki tō tākuta mō ngā tohutohu whaiaro.
- Kākahu Tiaki: Me mau i ngā kākahu ringaringa roa, ngā pōtae, me ngā mōhiti kanohi he ārai UV.
- Tirotiro Kiri Auau: Aroturukihia tō kiri i ia wā mō ngā ira hou, ngā kiore, ngā panonitanga rānei o te tae, te rahi, te āhua rānei o ngā mea kua puta. Mēnā ka kite koe i tētahi panonitanga, toro atu ki te tākuta tonu.
2. Tiaki Kanohi
- Ngā Whakamātautau Kanohi Auau: He mea nui kia toro atu te hunga mate pāwera ki tētahi tākuta kanohi i ia wā, i ia wā.
- Ngā Karaehe Whakatika: Mauria ngā mōhiti, ngā karaehe whakapā rānei e tika ana hei whakatika i ngā hapa tirohanga.
- Āwhina Tirohanga: Whakamahia ngā taputapu pēnei i ngā karāhe whakanui hei āwhina i te mārama o te tirohanga.
- Pokanga: I ētahi wā, ka taea te mahi pokanga hei whakatika i te tūnga o te kanohi (strabismus).
Mena he mate pūkahukahu tō tamaiti…
He mea noa iho te āwangawanga, te manukanuka rānei o ngā mātua ina rongo rātou he mate pāwera tā rātou tamaiti. Heoi, mā te tautoko tika me te mōhiotanga, ka taea e koe te whakarato i tētahi oranga whakamiharo ki tāu tamaiti.
- Whakamōhio atu ki te Kura: Kōrerohia te āhua o tāu tamaiti ki ā rātou kaiako, inā koa mō ngā ngoikoretanga o te tirohanga. Tonoa he wāhi noho pēnei i te nohoanga i te rarangi o mua, i ngā pukapuka tānga nui rānei.
- Hangaia te Whakapono ki a Ia Anō: Nā te mea he rerekē te āhua o tāu tamaiti, tera pea ka whakatoihia, ka tukinotia rānei. Kōrerohia mā te mahorahora ki a ia mai i te tamarikitanga, ā, waihangahia he taiao haumaru e pai ai ia ki te whakapuaki i ōna kare ā-roto ki a koe.
- Whakarerekētia te Whakamahinga o te Pāreti Rā: Me waiho te paninga o te pāreti rā hei tikanga whānau, kia kore ai tāu tamaiti e whakaaro kua wehea ia.
- Ngā Arotakenga Whai Aroturuki Auau: Me whakarite kia tutuki i tāu tamaiti ngā wā tirotiro kiri me ngā kanohi katoa kua whakaritea.
He uaua pea te noho me te mate pāwera, engari kia mahara: kāore e aukati i te hinengaro, i ngā pūkenga, i te kaha rānei o te tangata ki te angitu. Mā te whakahaere tika me te taiao tautoko, ka taea e tāu tamaiti te ora angitu, whai hua, pērā i tētahi atu.
Karere Tangohia ki te Kāinga
- Ehara te mate pāwera i te mate pukupuku, ehara hoki i te mate hopuhopu; he āhuatanga tuku iho.
- Ka puta mai tēnei i te whakaiti i te hanga o te melanin.
- Ka pā ki te tae o te kiri, te makawe, me ngā kanohi, ā, ka pā anō hoki ki te tirohanga.
- He mea nui te tiaki i tō kiri mai i te rā. Mā te whakamahi tika i te hinu ārai rā me ngā kākahu tiaki ka tino whakaiti i te tūponotanga o te mate pukupuku kiri.
- He mea whakahau kia tirohia ngā kanohi i ia wā.
- Mā te whakahaere tika me te tautoko, ka taea e te hunga whai mate pāwera te ora pai, te ora hauora, me te whai hua.
Te mate kiri, te melanin, ngā mate kiri, te tirohanga, ngā mate ira, te ārai rā, te mate pukupuku kiri
