Created at:1/16/2025
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Ko te anemia puku he mate toto ira a te tangata e huri ai o pūtau toto whero i to rātou āhua porowhita noa ki te āhua o te marama, ā, ko te tikanga he āhua puku. Kāore e kawe pai enei pūtau kua huri i te hāora, ka mau ki ngā oko toto iti, ka puta ai te mamae me ētahi atu raruraru.
E pā ana tenei āhuatanga ki te mano o te iwi puta noa te ao, ā, he mea whānau mai koe, ehara i te mea ka riro i te tangata ke. Ahakoa he āhuatanga ora tonu e hiahia ana ki te tiaki tonu, he tokomaha ngā tāngata e ora ana i te oranga katoa, i te oranga mahi me te maimoatanga tika me te tautoko.
Ko te anemia puku he mate i whakawhiwhia mai e te mātua e pā ana ki te hemoglobin i roto i ō pūtau toto whero. Ko te hemoglobin te pūmua e kawe ana i te hāora mai i ō manawa ki te toenga o tō tinana.
Ki ngā tāngata hauora, he porowhita, he ngawari ngā pūtau toto whero, ka taea ai te neke ngāwari i roto i ngā oko toto. Ki te anemia puku, ka pakari, ka piri, ka āhua puku ō pūtau toto whero. Ka whati ngāwari enei pūtau rerekē, kāore hoki e ora roa penei i ngā pūtau toto whero noa.
Ka taea hoki e ngā pūtau puku te whakakotahi me te aukati i te rere o te toto i roto i ngā oko iti. Ka aukati tenei aukati i te hāora ki ō kiko me ō whekau, ka puta ai te mamae me ngā raruraru e hono ana ki tenei āhuatanga.
Ka puta ngā tohu o te anemia puku i te tau tuatahi o te oranga, ahakoa kaore pea etahi e kite i nga tohu nui tae noa ki muri. Ka rereke te kaha me te auau o nga tohu mai i te tangata ki te tangata.
Koinei ngā tohu tino noa ka kitea e koe:
Ka taea e ngā tohu iti ake, engari he kino te kowhai o tō kiri me ō kanohi (jaundice), ka puta mai i te whati haere o ngā pūtau puku atu i te taea e tō tinana te whakakapi. Ka raru pea etahi i ngā mate huha e ora ana i te ngawari rānei i ngā tohu rite ki te pēhanga ki te aukati te rere o te toto ki te roro.
Ko te anemia puku te take i te huringa (mutation) i roto i te ira e korero ana ki tō tinana me pēhea te hanga hemoglobin. Ko tenei huringa ira te mea ka riro mai i ō mātua, ehara i te mea ka whanake i roto i tō oranga.
Kia whiwhi koe i te anemia puku, me whiwhi koe i ngā kape e rua o te ira puku, tētahi mai i ia mātua. Ki te whiwhi koe i tetahi kape anake, kei a koe te mea e kiia nei ko te ira puku, kaore e tino puta ngā tohu, engari ko te tikanga ka taea e koe te tuku i te ira ki ō tamariki.
Ka puta te mutation i te hanga e tō tinana i te momo hemoglobin rerekē e kiia nei ko te hemoglobin S. Ka tukuna e te hemoglobin S te hāora, ka hangaia e ia ngā rakau roa, pakari e huri ai te āhua o te pūtau toto whero mai i te porowhita ki te āhua puku.
Ko tenei āhuatanga te tino noa i ngā tāngata he whānau mai i Āwherika, te rohe o te Moana-nui-a-Kiwa, te Raki o te Hauauru, rānei Inia. I whanakehia e ēnei iwi te ira puku hei tiaki i te mate huaketo, he mate e kawe ana i te namu e tino noa ana i ēnei wāhi.
Me rapu wawe koe i te awhina hauora mena ka kite koe i ētahi tohu whakatūpato e taea ai te tohu i ngā raruraru nui. E hiahia ana enei āhuatanga ki te tiaki wawe, kāore hoki e tika te whakakahore.
Karanga atu ki tō taakuta inaianei rānei haere ki te ruma mō te urupare tere mena kei a koe:
He mea nui ngā tirotiro noa ki tō rōpū hauora ahakoa kei te pai koe. Ka āwhina ēnei haerenga ki te aroturuki i tō āhuatanga me te aukati i ngā raruraru i mua i te kino.
Na te mea he āhuatanga i whakawhiwhia mai e te mātua te anemia puku, ko tō take pāngarau matua ko tō papamuri ira. Heoi, ka taea e te mārama ki ēnei take pāngarau te āwhina i a koe ki te whakatau whakamārama mō te whakatupu whānau me te whakahaere hauora.
Ko ngā take pāngarau matua ko:
Mena kei a kōrua mātua te ira puku, he 25% te tūponotanga o te anemia puku, he 50% te tūponotanga o te ira puku, ā, he 25% te tūponotanga kaore tetahi o ngā mea e rua. Ka taea e te tohutohu ira te āwhina i a koe ki te mārama pai ake ki ēnei tūponotanga mena kei te whakaaro koe ki te whānau tamariki.
Ka taea e te anemia puku te pā ki ngā wāhanga katoa o tō tinana na te mea ka whakaitihia te tuku hāora ki ō kiko. Ahakoa ka taea te whakahaere i ngā raruraru maha me te tiaki tika, ko te mōhio ki a rātou ka āwhina i a koe ki te mahi tahi me tō rōpū hauora ki te aukati rānei ki te whakaora wawe i a rātou.
Ko ngā raruraru noa ka pa atu ki a koe ko:
Ko ngā raruraru iti ake, engari he kino te mate o te wheua, ka mate ai te kiko wheua na te kore o te rere o te toto, me te toto nui o te manawa, e pā ana ki ngā oko toto i ō manawa. Ka āwhina te aroturuki noa ki te hopu i ēnei raruraru i te wa e taea ai te whakaora.
Ko te tikanga ka whakatauhia te anemia puku mā ngā whakamātau toto e taea ai te kite i te hemoglobin puku. I ngā whenua maha, ka whakamātau ngā kaupapa tirotiro whānau hou i ngā pepe katoa i muri i te whānau, ka taea ai te whakatau me te whakaora wawe.
Ko ngā whakamātau whakatau matua ko te electrophoresis hemoglobin, e wehewehe ana i ngā momo hemoglobin rerekē ki te tautuhi i te hemoglobin puku. Ka tono pea tō taakuta i te maha o ngā pūtau toto katoa ki te tirotiro i te anemia me ētahi atu rerekētanga pūtau toto.
Mena he pakeke koe kaore i whakamātauhia hei pepe, rānei mena kei te whakaaro koe ki te whānau tamariki, ka taea e te whakamātau ira te whakatau mena kei a koe te ira puku. He mea nui tēnei mōhiohio mō te whakatupu whānau me te mārama ki tō tūponotanga ki te tuku i te āhuatanga ki ō tamariki.
Ka taea hoki e te whakamātau i mua i te whānautanga te kite i te anemia puku i ngā pepe kaore ano kia whānau. Ko te tikanga ka tukuna tēnei whakamātau ki ngā tokorua e mau ana ki te ira puku.
Ko te aro o te maimoatanga mō te anemia puku ki te aukati i ngā raruraru mamae, te whakahaere i ngā tohu, me te aukati i ngā raruraru. Ahakoa kāore he rongoā whānui, he maha ngā maimoatanga ka taea te whakapai ake i tō kounga o te oranga me te roa o te oranga.
Ko tō mahere maimoatanga ko te tikanga:
Mō ētahi, ko ngā maimoatanga hou penei i te voxelotor (e aukati ana i ngā pūtau toto whero kei te puku) rānei crizanlizumab (e whakaiti ana i ngā raruraru mamae) pea he kōwhiringa. Ko te whakawhiti wheua wheua te rongoā ka taea anake, engari ko te tikanga ka waihotia mō ngā take kino na te raruraru e pā ana.
Ko te rongoā ira he maimoatanga e puta mai ana e whakaatu ana i te tumanako i roto i ngā whakamātau hauora. Ko tenei huarahi te whakarereke i ō ake pūtau wheua wheua ki te whakaputa i te hemoglobin hauora, pea ka tukuna he rongoā kaore e hiahiatia he kai hoatu.
Ko te whakahaere i te anemia puku i te kāinga ko ngā tikanga o ia rā e taea ai te aukati i ngā raruraru mamae me te pupuri i a koe i te pai. Ka mahi ēnei rautaki me tō maimoatanga hauora ki te hoatu ki a koe te mana pai ake ki tō āhuatanga.
Ko ngā kaupae whakahaere o ia rā ko:
I te wā o te raruraru mamae, tono wera ki ngā wāhi e pā ana, tangohia ō rongoā mamae penei i te tohutohu, me te okioki. Mena ka nui te mamae, kāore rānei e pai ake, kaua e whakaroa ki te whakapiri atu ki tō kaiwhakarato hauora rānei ki te rapu awhina tere.
Na te mea he āhuatanga ira i whakawhiwhia mai e te mātua te anemia puku, kāore e taea e koe te aukati i te whanake mena ka whānau koe me ngā mutation ira. Heoi, ka taea e te tohutohu ira me te whakamātau te āwhina i ngā mātua e whakaaro ana ki te mārama ki tō rātou tūponotanga ki te whai tamaiti me te āhuatanga.
Mena kei te whakaaro koe ki te whānau tamariki, ā, he hītori whānau o te mate puku, ka taea e te whakamātau ira te whakatau mena kei a koe me tō hoa te ira puku. Ka taea e tēnei mōhiohio te āwhina i a koe ki te whakatau whakamārama mō te whakatupu whānau.
Ko te mea ka taea e koe te aukati ko te maha o ngā raruraru me ngā raruraru mamae e hono ana ki te anemia puku. Ko te whai i tō mahere maimoatanga, te noho makuku, te karo i ngā kaiwhakaohooho e mohiotia ana, me te pupuri i te tiaki hauora noa ka taea te whakaiti i tō tūponotanga ki ngā raruraru kino.
Ko te whakamahere pai mō ō hui hauora ka āwhina i a koe ki te whiwhi i te nuinga o tō wā me tō rōpū hauora. Ka whakarite te whakamahere pai kia whakautuhia ngā take nui, ā, kia pai te whakarite i ngā mahere maimoatanga mō ō hiahia.
I mua i tō hui, kohikohia ngā mōhiohio mō ō tohu hou, tae atu ki te wā i puta ai ngā wēhenga mamae, te kaha o rātou, me te mea i puta ai. Pupuri i te puka tohu mena ka taea, te tuhi i ngā taumata mamae, ngā mahi, me ētahi rongoā i tangohia e koe.
Kawe mai i te rārangi katoa o ngā rongoā katoa e tangohia ana e koe, tae atu ki ngā rongoā i runga i te kaute me ngā taapiri. Kawe mai hoki i ētahi pātai rānei āwangawanga kei a koe mō tō āhuatanga, ngā kōwhiringa maimoatanga, rānei ngā rautaki whakahaere o ia rā.
Whakaarohia te kawe mai i te mema whānau rānei hoa e taea ai te āwhina i a koe ki te mahara ki ngā mōhiohio nui i kōrerohia i te wā o te hui. Kaua e whakaroa ki te tono ki tō taakuta kia whakamārama i tetahi mea kaore koe i te mārama.
Ko te anemia puku he āhuatanga ira kino e hiahia ana ki te whakahaere ora tonu, engari kāore e tika te whakatau i tō oranga. Me te tiaki hauora tika, te whakahaere o ia rā, me te tautoko mai i tō rōpū hauora, he tokomaha ngā tāngata e ora ana i te anemia puku i te oranga katoa, i te oranga hua.
Ko te matua o te angitu ko te mahi tata me ngā kaiwhakarato hauora e mārama ana ki te āhuatanga, te whai i tō mahere maimoatanga, me te ako ki te mohio me te karo i ō kaiwhakaohooho whaiaro mō ngā raruraru mamae.
Kia mahara kei te pai haere tonu ngā kōwhiringa maimoatanga, ā, kei te whanake ngā kairangahau i ngā rongoā hou e tuku ana i te tumanako mō ngā hua pai ake i te heke mai. Noho hono atu ki tō rōpū hauora, noho mōhio atu ki tō āhuatanga, ā, kaua e whakaroa ki te rapu tautoko ina hiahia koe.
Kāo, ehara te anemia puku i te mate ka taea te hora. Kāore e taea e koe te hopu mai i tetahi atu, kāore hoki e hora atu ki ētahi atu. He āhuatanga ira tēnei ka riro mai i ō mātua mā ō rātou ira.
Ae, ka taea e ngā tāngata e whai ana i te anemia puku te whānau tamariki. Heoi, he tūponotanga o te tuku i te āhuatanga ki ō rātou tamariki i runga i te mea kei a rātou hoa te ira puku. Ka taea e te tohutohu ira te āwhina i ngā tokorua ki te mārama ki ēnei tūponotanga me te whakatau whakamārama.
Kua pai ake te roa o te oranga me ngā maimoatanga pai ake. He tokomaha ngā tāngata e whai ana i te anemia puku e ora ana inaianei ki ō rātou tekau tau 40, 50, me neke atu. Ko te whakatau wawe, te tiaki hauora tonu, me te whai i ngā mahere maimoatanga ka taea te āwhina i te whakawhiti i te roa o te oranga me te whakapai ake i te kounga o te oranga.
I tēnei wā, ko te whakawhiti wheua wheua te rongoā i whakapumautia anake, engari he raruraru nui, ā, ko te tikanga ka waihotia mō ngā take kino. Ko te rongoā ira e whakaatu ana i te tumanako i roto i ngā whakamātau hauora, ā, pea ka tuku i te tumanako mō te rongoā i te heke mai kaore e hiahiatia he kai hoatu.
Ka puta te anemia puku ina whiwhi koe i ngā kape e rua o te ira puku (tētahi mai i ia mātua). Ka puta te ira puku ina whiwhi koe i tetahi kape anake o te ira. Ko te tikanga kāore ngā tāngata e whai ana i te ira puku e whai tohu, engari ka taea te tuku i te ira ki ō rātou tamariki.