He aha te Albinism? Ngā Tohutohu, Ngā Take, me te Maimoatanga

Ko te albinism he āhuatanga ira tuku iho e iti noa ai te melanin, te tae e hoatu ana i te tae ki tō kiri, makawe, me ngā kanohi. Ka puta tēnei nā ngā huringa i roto i ngā ira e whakahaere ana i te whakaputanga o te melanin, e pā ana ki te iwi katoa o te ao.

Ahakoa te albinism e kore e tino mōhiotia, he huarahi rerekē noa te tukatuka o tō tinana i te tae. Ko te nuinga o te hunga e pangia ana e te albinism e ora ana i te ora katoa, hauora me te tiaki tika me te tiaki i te rā.

He aha te Albinism?

Ka puta te albinism ina kore e taea e tō tinana te hanga i te melanin, te tae taiao e kawea mai ana te tae ki tō kiri, makawe, me ngā kanohi. Whakaarohia te melanin hei parāoa rā me te kaihanga tae o roto i tō tinana.

Ka pā tēnei āhuatanga ki te 1 i roto i te 17,000 ki te 20,000 o te iwi o te ao. Kāore tēnei he mate ka hopukina e koe, ka whanake haere rānei i te wā. Engari, ka whānau koe me tēnei nā ngā huringa ira motuhake i tukuna iho i ō mātua.

Ko te hunga e pangia ana e te albinism he kiri mā, he makawe ma, he kowhai mā, he kanohi mā. Heoi, ka rereke te nui o te tae mai i te tangata ki te tangata, ahakoa i roto i te whānau kotahi.

He aha ngā momo Albinism?

He maha ngā momo albinism, e pā ana ia ki te whakaputanga o te tae. Ko ngā kāwai matua e rua ko te oculocutaneous albinism me te ocular albinism.

Ka pā te oculocutaneous albinism (OCA) ki tō kiri, makawe, me ngā kanohi. Koinei te momo tino noa, me ngā momo wha e tohua ana ko OCA1 ki OCA4. Kei ia momo ngā ira rerekē, me ngā taumata tae rerekē.

Ko te OCA1 te tikanga ka kore te melanin e puta, ka puta mai he makawe ma, he kiri mā rawa, me ngā kanohi kikorangi mā. Ko te OCA2, he mea noa i te iwi o Awherika, ka tukuna etahi tae, na reira pea he kowhai, he parauri mā te makawe.

Ko te ocular albinism e pā ana ki ō kanohi, engari ka waiho te tae o te kiri me te makawe i te noa. He tino onge tēnei momo, ā, e pā ana ki ngā tane no te mea e hono ana ki te X chromosome.

Ko ētahi momo onge ko te Hermansky-Pudlak syndrome me te Chediak-Higashi syndrome. Kei roto i ēnei ngā raruraru hauora atu i ngā tohu albinism noa, me te hiahia ki te tiaki hauora motuhake.

He aha ngā Tohutohu o te Albinism?

Ko ngā tohu tino kitea o te albinism e pā ana ki ngā huringa i roto i te tae me te tirohanga. Ko ēnei tohu e kitea ana i te whānau, i te tamarikitanga rānei.

Ko ēnei ngā tohu noa ka kitea e koe:

• He kiri mā rawa e tahuna ngāwari ana i te rā
• He makawe ma, kowhai mā, he parauri mā
• He kanohi kikorangi mā, hina, he parauri mā
• He kanohi e puta ana he whero, he whero i roto i ētahi rāmarama
• Te ngawari ki ngā rāmarama mā
• Ngā nekehanga kanohi tere, kore-whakahaere (nystagmus)
• Ngā kanohi kaore e whai i te taha kotahi
• Te tirohanga tata, te tirohanga tawhiti, te astigmatism rānei

He mea noa ngā raruraru tirohanga, na te mea he mea nui te melanin ki te whanaketanga tika o te kanohi. Ko te kore o te tae e pā ana ki te whanaketanga o tō retina me te tukatuka o tō roro i ngā korero tirohanga.

He mea nui kia mōhio koe ka rereke haere ngā tohu. Ko ētahi tangata he tae nui atu i ētahi, ka puta mai he makawe pouri ake, he kanohi rānei i te mea ka tumanako koe ki te albinism.

He aha ngā Take o te Albinism?

Ko te albinism te take i ngā huringa i roto i ngā ira motuhake e whakahaere ana i te whakaputanga o te melanin. Ka riro ēnei huringa ira i ō mātua, arā, ka whānau koe me te āhuatanga.

Me whakamahi tō tinana i ngā ira rerekē e mahi tahi ana hei hanga i te melanin tika. Ina he huringa, he mutation rānei tētahi, neke atu rānei o ēnei ira, ka whakaroa i te tukanga whakaputanga tae noa.

Ko te nuinga o ngā momo albinism e whai ana i te tauira autosomal recessive. Ko te tikanga me whiwhi koe i te ira huringa mai i ō mātua e rua kia pangia koe e te albinism. Ki te whiwhi koe i te ira huringa kotahi anake, he kaimau koe, engari e kore koe e pangia e te albinism.

Ko ngā ira e whakamahia nuitia ana ko TYR, OCA2, TYRP1, me SLC45A2. Kei ia ira te whakahaere i tētahi waahanga rerekē i te whakaputanga o te melanin, e whakamārama ana he aha ngā momo albinism rerekē me ngā tohu rerekē.

He rerekē te ocular albinism, na te mea he X-linked, arā, kei te X chromosome te huringa ira. Koinei te take e pā ana ki ngā tane, he kotahi noa te X chromosome.

He aha ngā Take Pāngarau mō te Albinism?

Ko te take pāngarau matua mō te albinism ko te whai i ngā mātua e mau ana i ngā huringa ira e hono ana ki te āhuatanga. Na te mea ka riro te albinism, ko te hītori whānau te mea nui.

Mēnā he kaimau ngā mātua e rua o te ira albinism kotahi, he 25% te tūpono i ia haputanga ka pangia tō tamaiti e te albinism. Ko ngā mātua he kaimau he tae noa te tikanga.

Ko ētahi iwi he nui ake te maha o ngā momo albinism motuhake. Hei tauira, he mea noa te OCA2 i te iwi o Awherika, i te mea he rite te tohatoha o te OCA1 puta noa i ngā rōpū iwi rerekē.

Ka taea e ngā marena whānau, ina he whānau e pā ana ngā mātua, te whakapiki i te tūpono na te mea he nui ake te tūpono o ngā mātua e rua ki te mau i ngā huringa ira kotahi. Heoi, ka taea te puta mai te albinism i roto i tetahi whānau, ahakoa te iwi, te hītori whānau rānei.

Nōhea te Tiro ki te Taakuta mō te Albinism?

Me kite koe i tetahi taakuta mēnā ka kite koe i ngā tohu o te albinism i roto i a koe, i tō tamaiti rānei. Ka taea e te whakatau me te tiaki wawe te āwhina i te aukati i ngā raruraru me te whakarite i te whanaketanga tirohanga tika.

Whakamahia he wā whakarite mēnā ka kite koe i te kiri mā rawa me te makawe, ngā kanohi mā, he raruraru tirohanga penei i te ngawari ki te rāmarama, he nekehanga kanohi kore-whakahaere rānei. Ko ēnei tohu ngātahi e tohu ana i te albinism.

He mea nui ngā tirotiro kanohi auau mō te hunga e pangia ana e te albinism, he pai te tīmatanga i te wā pepeke. Ka taea e te ophthalmologist te aroturuki i te whanaketanga tirohanga me te tūtohutia ngā maimoatanga hei whakapai ake i te tirohanga.

Me ui atu hoki koe ki te dermatologist hei whakawhanake i te mahere tiaki kiri whānui. He nui ake te tūpono o te kino o te kiri me te mate pūngāwerewere kiri mō te hunga e pangia ana e te albinism me te kore o ngā whakaritenga tika.

Rapua te awhina hauora tonu mēnā ka kite koe i ētahi huringa i roto i ngā whetu, i ngā whetu kiri rānei, ngā pōka e kore e ora, he tipu kiri rerekē rānei. Ka taea e ēnei te tohu o te mate pūngāwerewere kiri, he mea noa i te hunga e pangia ana e te albinism.

He aha ngā Raruraru Ka Taea o te Albinism?

Ahakoa te albinism ehara i te mea mate kino, ka taea e ia te arahi ki ētahi raruraru e hiahia ana ki te whakahaere tonu. Ko ngā take tino nui e pā ana ki ngā raruraru tirohanga me te nui ake o te tūpono o te mate pūngāwerewere kiri.

Ko ēnei ngā raruraru matua ka taea te whanake:

• Te ngoikore o te tirohanga, te matapo ture rānei
• Te nui ake o te tūpono o te mate pūngāwerewere kiri, tae atu ki te melanoma
• Te tahunga rā nui me te kino o te kiri
• Ngā wero pāpori me ngā kare-a-roto nā ngā rerekētanga āhuatanga
• Ngā uaua ako e pā ana ki ngā raruraru tirohanga
• Te iti o te kite hohonu me te whai i te tirohanga

He mea wero motuhake ngā raruraru tirohanga na te mea kaore e taea te whakatika katoa ki ngā karāhe rānei. Ko te nuinga o te hunga e pangia ana e te albinism he iti te kite, ā, ka taea te whakaingoa he matapo ture.

He nui ake te tūpono o te mate pūngāwerewere kiri na te mea ko te melanin te tikanga e tiaki ana i tō kiri i te pānga o te UV radiation. Me te kore o tēnei tiaki, ahakoa te poto o te whakamahinga o te rā ka taea te whakarahi i te kino.

Ko ētahi momo onge o te albinism, penei i te Hermansky-Pudlak syndrome, ka taea te whakauru i ētahi atu raruraru penei i ngā mate toto, ngā raruraru manawa, te mumura o te kopu rānei. Kei te hiahia ēnei ki te whakahaere hauora motuhake puta noa i te ora.

Me pēhea te Whakatau i te Albinism?

Ko te albinism e whakatauhia ana i runga i te ahua tinana me te hītori whānau. Ka tirotirohia e tō taakuta tō kiri, makawe, me ngā kanohi mō ngā tohu āhuatanga o te iti o te tae.

He mea nui te tirotiro kanohi whānui mō te whakatau. Ka rapu te ophthalmologist i ngā huringa motuhake i roto i tō retina me te uaua optic e puta ana me te albinism, penei i te foveal hypoplasia, te he rānei o ngā muka uaua optic.

Ka taea e te whakamātautau ira te whakau i te whakatau me te tohu i te momo albinism motuhake. Kei roto i tēnei he whakamātautau toto ngāwari e rapu ana i ngā huringa i roto i ngā ira e mohiotia ana he take mō te albinism.

Ka taea hoki e tō taakuta te mahi i ētahi atu whakamātautau hei whakakore i ētahi atu āhuatanga. Ka taea e ēnei te tirotiro i tō tirohanga, te tirotiro i tō kiri i raro i ngā rāmarama motuhake, te whakamātautau rānei mō ngā mate toto mēnā ka whakapaehia ētahi momo onge.

E wātea ana te whakamātautau i mua i te whānautanga mēnā he kaimau ngā mātua e rua. Ka taea tēnei mā te amniocentesis, te chorionic villus sampling rānei i te wā haputanga.

He aha te Maimoatanga mō te Albinism?

Kāore he rongoā mō te albinism, engari ka taea e ngā maimoatanga maha te āwhina i te whakahaere i ngā tohu me te aukati i ngā raruraru. Ko te arotahi ki te tiaki i tō tirohanga me tō kiri me te tautoko i tō kounga ora whānui.

Ko te tiaki tirohanga he mea nui. Ka taea e tō taakuta kanohi te tūtohutia ngā karāhe motuhake, ngā karāhe hono, ngā taputapu tirohanga iti rānei hei āwhina i a koe ki te kite pai ake. Ko ētahi tangata e whai hua ana i te pokanga hei whakatika i ngā raruraru uaua kanohi.

He mea tino nui te tiaki kiri. Ko te tikanga tenei te whakamahi i te parāoa rā whānui-spectrum me te SPF 30 neke atu rānei, te kakahu kakahu tiaki, me te karo i ngā hāora rā nui ina taea.

Ko ēnei ngā huarahi maimoatanga matua:

• Ngā karāhe rongoā, ngā karāhe hono rānei mō te whakatika tirohanga
• Ngā taputapu tirohanga iti penei i ngā kaitirotiro, te pūmanawa rorohiko motuhake rānei
• Te pokanga mō ngā raruraru uaua kanohi, te nystagmus rānei
• Ngā tirotiro dermatology auau mō te whakamātautau mate pūngāwerewere kiri
• Te tohutohu, ngā rōpū tautoko rānei mō te oranga kare-a-roto
• Ngā whakaritenga mātauranga mō ngā hiahia ako e pā ana ki te tirohanga

Kei te rangahauhia ētahi maimoatanga hou, tae atu ki te gene therapy me ngā rongoā ka taea te āwhina i te whakaputa i te melanin nui ake. Heoi, kei te whakamātautau tonu ēnei, kāore hoki i te wātea whānui.

Me pēhea te Tikanga Whare i te Wā Albinism?

Ko te whakahaere i te albinism i te kāinga e arotahi ana ki te tiaki i te rā, te tautoko tirohanga, me te pupuri i tō oranga kare-a-roto. Ko ngā tikanga o ia rā e whakarereke nui ana i te aukati i ngā raruraru.

Me waiho te tiaki i te rā hei wāhanga o tō mahi o ia rā, ahakoa i ngā rā kapua. Whakamahia te parāoa rā 30 meneti i mua i te haere ki waho, ka whakamahi anō i ia rua hāora. Kakahu i ngā potae whānui-taha, ngā ringa roa, me ngā karāhe kanohi ina taea.

Hangaia he taiao tirohanga-pai i te kāinga mā te whakarite i te rāmarama pai mō te pānui me te mahi tata. Whakaarohia te whakamahi i ngā pukapuka nui-tuhi, ngā rauemi nui-whakapae, ngā taputapu whakanui rānei e hiahiatia ana.

He mea nui ngā tirotiro kiri auau mō te kite wawe i ētahi huringa. Tirohia tō kiri ia marama mō ngā whetu hou, ngā huringa i roto i ngā whetu o nāianei, ngā pōka rānei e kore e ora.

Noho hono ki ngā rōpū tautoko, ki ngā hapori ipurangi rānei mō te hunga e pangia ana e te albinism. Ko te whakawhiti i ngā wheako me ngā tohutohu ki ētahi atu e mōhio ana ka tino whai hua mō ngā tohutohu mahi me te tautoko kare-a-roto.

Me pēhea te Aukati i te Albinism?

Kāore e taea te aukati i te albinism na te mea he āhuatanga ira tuku iho ka whānau koe. Heoi, ka taea e te tohutohu ira te āwhina i ngā whānau kia mōhio ki ō rātou tūpono me te whakatau whakamārama mō te whakatōpūtanga whānau.

Mēnā kei a koe te albinism, he kaimau rānei koe, ka taea e te tohutohu ira te whakamārama i ngā tūpono o te tuku i te āhuatanga ki ō tamariki. Ka taea e te kaiwhakaako ira te āwhina i a koe ki te mōhio ki ngā tauira tuku me ngā kōwhiringa whakamātautau e wātea ana.

E wātea ana te whakamātautau i mua i te whānautanga mō ngā tokorua he kaimau e rua, e hiahia ana ki te mōhio mēnā ka pangia tō rātou pēpi e te albinism. Ka taea e tēnei korero te āwhina i a koe ki te whakarite mō ngā hiahia motuhake o tō tamaiti.

Ahakoa kaore e taea e koe te aukati i te albinism, ka taea e koe te aukati i te nuinga o ōna raruraru mā te tiaki tika me te tiaki puta noa i te ora.

Me pēhea te Whakarite mō tō Wā Whakarite Taakuta?

Ko te whakarite mō tō wā whakarite taakuta e āwhina ana ki te whakarite ka whiwhi koe i te tiaki whānui rawa. Maua mai he rārangi o ō tohu katoa, ngā rongoā, me ngā pātai e hiahia ana koe ki te kōrero.

Tuhia tō hītori whānau, ina koa ngā whānau e pangia ana e te albinism, ngā raruraru tirohanga, he tae rerekē rānei. Ka āwhina tēnei korero i tō taakuta ki te mōhio ki tō momo me ō take pāngarau motuhake.

Maua mai he rārangi o ō rongoā o nāianei, ngā taapiri, me ētahi taputapu tirohanga e whakamahi ana koe. Tēnā hoki, tuhia ētahi huringa kiri, he tohu āwangawanga rānei kua kitea e koe i te wā tata nei.

Whakaarohia te mau mai i tētahi mema whānau, i tētahi hoa rānei mō te tautoko, ina koa mēnā kei te kōrero koe mō te whakamātautau ira, te whakatōpūtanga whānau rānei. Ka taea e rātou te āwhina i a koe ki te mahara ki ngā korero nui i kōrerotia i te wā whakarite.

Whakaritehia ngā pātai mō te whakahaere o ia rā, ngā rautaki tiaki rā, ngā taputapu tirohanga, me ētahi āwangawanga mō ngā raruraru. Kaua e whakaroa ki te ui mō ngā rauemi mō ngā rōpū tautoko, ngā whakaritenga mātauranga rānei.

He aha te Tango Matua mō te Albinism?

Ko te albinism he āhuatanga ira tuku iho e taea te whakahaere e pā ana ki te whakaputanga o te tae i tō kiri, makawe, me ngā kanohi. Ahakoa ka whakaputa mai i ētahi wero, ina koa ki te tirohanga me te ngawari ki te rā, ko te nuinga o te hunga e pangia ana e te albinism e ora ana i te ora katoa, hua.

Ko te ki mō te ora pai me te albinism ko te tiaki me te tiaki tonu. Ko te tikanga tenei ngā tirotiro kanohi auau, te tiaki rā tika, ngā tirotiro kiri auau, me te noho hono ki ngā kaiwhakarato hauora e mōhio ana ki te āhuatanga.

Kia mahara ko te albinism he taha noa iho o wai koe. Me te whakahaere tika me te tautoko, ka taea e koe te whai i ō whāinga, te pupuri i ngā hononga, me te koa ki te ora pera i tetahi atu.

Noho whakamārama mō ngā maimoatanga hou me te rangahau, engari kaua e waiho te āhuatanga hei whakatau i ō wāhi whakawātea. Aro ki te mea ka taea e koe me te tautoko e wātea ana hei āwhina i a koe ki te ora.

Ngā Pātai Nui e Uihia Ana mō te Albinism

P1: Ka taea e te hunga e pangia ana e te albinism te whānau tamariki kaore e pangia e te albinism?

Ae, ka taea e te hunga e pangia ana e te albinism te whānau tamariki kaore e pangia e te āhuatanga. Ki te kore tō hoa e mau i ngā huringa ira kotahi, ka waiho ō tamariki hei kaimau, engari e kore e pangia e te albinism. Ko te tauira tuku e whakawhirinaki ana ki te momo albinism motuhake me te tūāhua ira o ngā mātua e rua.

P2: He kanohi whero te hunga e pangia ana e te albinism?

Kāore he kanohi whero te hunga e pangia ana e te albinism. Ko ō rātou kanohi he kikorangi mā, hina, he parauri mā te tikanga. Ko te ahua whero e puta ana i roto i ētahi āhuatanga rāmarama ina whakaata te rāmarama i ngā uaua toto i muri o te kanohi nā te kore o te tae.

P3: Ka taea te whanake o te albinism i muri mai i te ora?

Kāore, ko te albinism he āhuatanga ira tuku iho ka whānau koe. Kāore e whanake i muri mai i te ora. Heoi, ko ētahi tangata e whai ana i ngā momo ngawari pea kaore e whakatauhia kia tae rawa ki te tamarikitanga ina puta mai ngā raruraru tirohanga, ina whānau rānei ō rātou tamariki e pāngia ana.

P4: He mea noa ake te albinism i roto i ētahi rōpū iwi?

Ko ngā momo albinism rerekē he mea noa ake i roto i ētahi iwi. Hei tauira, he mea noa te OCA2 i te iwi o Awherika, i te mea e puta ana te OCA1 puta noa i ngā rōpū iwi. Heoi, ka taea te pā o te albinism ki tetahi tangata ahakoa tōna iwi.

P5: Ka taea e te hunga e pangia ana e te albinism te whakamārama, te pouri ake rānei me te whakamahinga o te rā?

Ko te nuinga o te hunga e pangia ana e te albinism kaore e taea te whakamārama, ā, ka tahuna noa i te whakamahinga o te rā. Ko ētahi tangata e whai ana i ētahi momo albinism pea ka whanake i te pouri iti, engari he iti tēnei, kāore hoki e whakarato i te tiaki whai hua mai i te kino UV. He mea nui tonu te tiaki rā ahakoa ētahi huringa tae iti.