Kei te ngenge tonu koe, kei te ngenge rawa? Tērā pea he mā tō kiri? Ehara i te mea he mea noa iho ēnei, tērā pea ko te mate toto iti, arā, ko te kore toto, te take. I tēnei rā kei te kōrero tātou mō te 'Thalassemia', he mate whānau e pā ana ki te toto, he mea noa i roto i te tini o te tangata o tō tātou whenua. Kaua e mataku ina rongo koe i tēnei ingoa. Kia mārama tātou ki ngā mea katoa mō tēnei mea.
He aha rawa te Thalassemia?
He whakarāpopototanga noa iho, ko te thalassemia he mate toto tuku iho e tukuna mai ana i te whānautanga . Ehara i te mate hopuhopu. Ka ārai tēnei āhuatanga i te tinana ki te whakaputa i te hemoglobin hauora e ranea ana.
Tērā pea kei te whakaaro koe he aha te hemoglobin. He pūmua motuhake te hemoglobin kei roto i ō tātou toto whero. He rite tana mahi ki te 'ratonga tuku' e kawe ana i te hāora puta noa i ō tātou tinana. Ko tēnei kete e kiia nei ko te hemoglobin ka tukuna ki ia pūtau o te tinana e ngā waka e kiia nei ko ngā toto whero.
He iti iho te hanga o te hemoglobin hauora i roto i te tinana o te tangata e pangia ana e te thalassemia. Nō reira, ka iti haere hoki te maha o ngā toto whero hauora i roto i te tinana. Ko tēnei āhuatanga o te iti o ngā toto whero e kiia nei e tātou ko te anemia , ko te 'kore toto' rānei. Ina kore ngā pūtau o te tinana e whiwhi i te hāora e hiahiatia ana e rātou, ka tīmata te puta o ngā tohu rerekē.
Ko te tikanga tera pea ka pāngia koe e ēnei āhuatanga:
- Te ahua tonu o te ngenge nui me te ngenge.
- Te uaua ki te manawa.
- Te mātao.
- Te pōuriuri.
- Kiri mā.
He aha ngā take o te thalassemia? Ko wai kei te mōrearea nui ake?
Ko te thalassemia te take o tētahi hapa i roto i ō tātou ira. Whakaarohia ēnei ira hei 'waehere hōtaka' kei roto ngā tohutohu mō te hanganga o ngā mea katoa i roto i tō tātou tinana. Ka hangaia te pūmua hemoglobin i runga i ngā tohutohu mai i ēnei ira. Mena he hapa kei roto i ēnei tohutohu, ki te ngaro rānei tētahi wāhanga o aua ira, kāore e taea e te tinana te hanga hemoglobin hauora. Ka riro mai i a tātou ēnei ira hapa i ō tātou mātua. Koia i kiia ai he mate tuku iho.
E whā ngā mekameka pūmua o te ngota hemoglobin: e rua ngā mekameka alpha globin me ētahi mekameka beta globin.
- E whā ngā ira e hiahiatia ana hei hanga mekameka alpha globin (e rua mai i ia mātua).
- E rua ngā ira e hiahiatia ana hei hanga mekameka beta globin (tētahi mai i ia mātua).
Mena he hapa kei roto i ngā ira e hanga ana i ēnei mekameka alpha, beta rānei, ka puta te thalassemia. Ka whakatauhia te kaha o te mate e te maha o ngā ira hapa.
E whakaponohia ana i puta mai ēnei whakarerekētanga ira hei momo ārai i te malaria, inā koa i ngā rohe pēnei i a Āwherika, i te Tonga o Ūropi, me Āhia (tae atu ki tō tātou whenua), i horapa ai te malaria i roto i te hītori. Nō reira, he mea noa te kite i te thalassemia i waenga i te iwi o ēnei rohe.
He aha ngā momo matua o te thalassemia?
Ka taea te wehewehe i te Thalassemia ki ētahi taumata matua i runga i te kaha o te mate. Arā, ka taea te horapa mai i te āhua kawe kore tohu (āhua), ki te iti, te waenga, me te nui. Ko te momo tino kino, ko te Thalassemia Nui, me haere tonu te maimoatanga.
E rua ngā momo matua o te thalassemia, i runga i te mea kei roto i ngā mekameka alpha, kei roto rānei i ngā mekameka beta te hapa ira.
1. Te mate pūkahukahu ā-ira
2. Beta Thalassemia
Kia mārama ake tātou ki ēnei momo e rua mai i te ripanga i raro nei.
| Momo Thalassemia | Te awe o ngā ira | Te āhua me ngā tohu o te mate |
|---|---|---|
| Alpha Thalassemia | ||
| He hapa i roto i te ira kotahi | He hapa kei roto i tētahi o ngā ira alpha globin e whā. | Kāore he tohu. Ko te tikanga he hunga kawe noa iho ēnei tāngata i te mate. |
| E rua ngā hapa ira | He hapa kei roto i te 2 o ngā ira alpha globin e 4. | Tērā pea kāore he tohu o te mate, kāore rānei he tohu ngawari o te anemia (pērā i te ngenge ngawari). |
| Ngā hapa ira e toru (te mate Hemoglobin H) | He hapa kei roto i te 3 o roto i te 4 o ngā ira alpha globin. | Ko ngā tohumate he paku noa ki te kino rawa. Ka mau tonu te mate toto i te roanga o te oranga. |
| Koha i roto i ngā ira e whā | He hapa katoa ngā ira alpha globin e whā. | He mate tino kino. He maha ngā wā ka mate te pēpi i roto i te kōpū, i muri tata rānei i te whānautanga. |
| Beta Thalassemia | ||
| He hapa i roto i te ira kotahi (Beta thalassemia minor) | He hapa kei roto i tētahi o ngā ira beta globin e rua. | Ka kitea ngā tohumate ngoikore o te mate toto. He maha ngā tāngata e ora hauora ana hei kawe i te mate. |
| Te hapa i roto i ngā ira e rua (Beta thalassemia nui / Cooley's Anemia) | He hapa ngā ira beta globin e rua. | Kei waenga ngā tohu i te nui ki te rahi. Ko te mate tino kino ko te anemia a Cooley, ā, me haere tonu te maimoatanga. |
He aha ngā tohu pea o te thalassemia?
Ko ngā tohu e pā ana ki a koe ka whakawhirinaki ki te momo thalassemia kei a koe me tōna kaha.
Ngā kēhi kāore he tohu
Mena he hapa ira alpha kotahi tōu, he mate ngawari rānei pērā i te beta thalassemia iti, tērā pea kāore he tohu o tō mate . Tērā pea ka pāngia koe e te ngenge ngawari.
Ngā tohu ngawari me ngā tohu taurite
I ngā āhuatanga ngāwari ake, pērā i te beta thalassemia intermedia, hei tāpiri atu ki ngā tohumate anemia ngāwari, ka puta pea ēnei e whai ake nei:
- Te puhoi o te tipu o ngā tamariki.
- Te pakeketanga kua roa.
- Ngā āhuatanga rerekē o te wheua (hei tauira, te osteoporosis).
- Te whakanui ake i te ate (he okana tēnei e whawhai ana ki ngā mate pukupuku).
Ngā tohu kino
I ngā āhuatanga kino, pērā i te hapa i roto i ngā ira alpha e toru (te mate Hemoglobin H) te beta thalassemia nui rānei (te anemia a Cooley), ka puta ngā tohu i mua i te rua tau o te tamaiti. Haunga ngā tohu o runga ake nei, ka kitea pea ēnei e whai ake nei:
- Te ngaronga o te hiahia kai.
- He kiri mā, he kiri kōwhai rānei (pērā i te kiri māwhero).
- He mimi pouri, he tae tī .
- Te tipu rerekē o ngā wheua kanohi.
Me pēhea te tautuhi tika i tēnei mate?
He maha ngā wā ka kitea te thalassemia ngawari me te thalassemia kino i te wā tamarikitanga. Nā te mea ka tīmata ngā tohu ki te puta i roto i ngā tau tuatahi e rua o te oranga o te tamaiti. Tērā pea ka tonoa e tō tākuta he whakamātautau toto hei tātaritanga i te mate.
- Te Tatau Toto Katoa (CBC): Ka ine tēnei i te maha o ngā toto whero, tōna rahi, me ngā taumata o te hemoglobin. He iti ake ngā toto whero hauora o te hunga whai thalassemia, ā, tera pea he iti ake te rahi.
- Te whakamātautau taumata rino: He mea nui tēnei whakamātautau hei wehewehe i waenga i te korenga o te rino me te thalassemia.
- Hemoglobin Electrophoresis: Ka whakamahia motuhaketia tēnei whakamātautau hei tātaritanga i te beta thalassemia.
- Whakamātautau Ira: Ka whakamahia ēnei whakamātautau hei whakaū i te alpha thalassemia me te tautuhi i ngā kaikawe o te mate.
He aha ngā maimoatanga mō te thalassemia?
Ko ngā kōwhiringa maimoatanga e whakawhirinaki ana ki te kaha o te mate. He maha ngā wā kāore e hiahiatia he maimoatanga mō ngā mate ngawari. Heoi, he maha ngā maimoatanga matua mō ngā mate kino.
- (Blood Transfusions): ' ' . , . 2-4 .
- (Iron Chelation Therapy): . 'iron overload' . , . , ' ' . .
- Ngā Tāpiringa Waikawa Folic: Ka whakaratohia te waikawa folic hei āwhina i te tinana ki te hanga pūtau toto hauora.
- Te Whakatō Wiwi: Koinei anake te maimoatanga ka taea te whakaora katoa i te thalassemia . Heoi, he pokanga tino mōrearea, he uaua hoki. Mō tēnei, me whai kaituku hauora te tūroro, he tino hototahi, he tuakana, teina rānei.
Akohia ngā āhuatanga uaua, te maimoatanga, me te roanga o te ora.
Ki te kore e rongoatia tika, ko te raruraru matua ko te kino o te ngākau, te ate, me ngā repe whakaputa homoni, inā koa nā te nui rawa o te rino. Nō reira, kia rite ki te whakahaungaHe mea tino nui te maimoatanga chelation rino.
Ahakoa ka taea e te whakawhitinga wheua te rongoā i te mate, kāore e taea e te katoa te whiwhi i tēnei maimoatanga nā te uaua o te kimi i tētahi kaituku tika me ngā mōrearea o te pokanga.
Mō te roanga o te oranga, ki te mea he thalassemia minor tōu, ka taea e koe te tumanako kia noho noa te roanga o te oranga. Ahakoa he mate ngawari, he mate kino rānei tōu, ki te whai koe i te maimoatanga kua whakaritea (te whakawhiti toto me te tango rino), he nui te tūponotanga ka ora roa koe, ka ora hauora hoki . Ko te mate manawa te tino take mō te mate. Nō reira, he mea nui kia mahia te maimoatanga tango rino me te kore e mahue.
Ka taea te ārai i te mate? Ā, me te tiaki tonu e hiahiatia ana
He mate ira te Thalassemia, nō reira kāore e taea e tātou te ārai i tōna putanga mai. Heoi, mā te whakamātautau ira koe e āwhina ki te kimi mēnā ko koe, ko tō hoa rānei, he kaikawe i te ira thalassemia. Mena kei te whakaaro koe kia whānau he tamaiti, he mea nui kia mōhio koe ki ēnei mōhiohio. Mō ētahi atu tohutohu, tirohia he kaitohutohu ira, tō tākuta rānei.
Mena he thalassemia tōu, me tirotirohia tonutia ō toto (CBC) me ngā taumata rino. Tērā pea ka tūtohu tō tākuta kia whakamātauria te mahi a tō ngākau me tō ate i te iti rawa kotahi i te tau.
Karere Tangohia ki te Kāinga
- Ehara te thalassemia i te mate hopuhopu, he mate ira i tukuna iho mai i ngā mātua.
- Ka rerekē pea tēnei mate mai i te āhua kawe kore tohu ki te āhua kino e hiahia ana kia rongoatia tonutia.
- Kia roa ai te ora hauora me te roa o te oranga o ngā tūroro e pangia ana e te thalassemia major, he mea nui te whakawhiti toto auau me te rongoā tango rino.
- Mena he hītori tō whānau mō te thalassemia, he mea whakaaro nui kia kōrero koe ki tō tākuta mō tēnei mea, kia whakamātauria hoki ō ira i mua i te whānautanga o tētahi tamaiti.
- Kaua e warewarehia ngā tohu pēnei i te ngenge me te kiri mā. Rapua tonu he tohutohu hauora.
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