E mōhio ana koe ki te Beta Thalassemia? Me kōrero māmā noa iho!

Kua rongo kē koe i te mate e kiia nei ko te 'thalassemia'? Tērā pea kei roto i tō whānau, i tō hoa rānei tēnei mate. He mate tēnei e pā ana ki ō tātou toto. I tēnei rā ka kōrero tātou mō tētahi o ngā momo matua o te thalassemia , arā, ko te Beta Thalassemia . Ahakoa he ahua uaua te ahua o tēnei ingoa, ka kōrerohia e tātou he tino māmā noa iho, i roto i te huarahi e mārama ai koe.

He aha te Beta Thalassemia?

Ki te whakarapopoto, ko te beta thalassemia he mate toto e kore e taea e te tinana te hanga tika i te hemoglobin . Inaianei pea ka pātai koe, "He aha te hemoglobin?" Ko te hemoglobin he pūmua kei roto i ō tātou toto whero he nui te rino kei roto. Inaa, koinei te wāhanga matua o ngā toto whero.

Whakaarohia pēnei: ​​he rite te hemoglobin ki tētahi waka e āwhina ana i ō tātou toto whero ki te kawe i te hāora. Ka haria e ēnei toto whero te hāora ki ētahi atu pūtau me ngā kiko puta noa i te tinana. Nō reira, ka whakamahia e ō tātou pūtau tēnei hāora hei hanga pūngao.

Ko te beta thalassemia tētahi o ngā momo matua e rua o te thalassemia. I roto i tēnei, he rerekētanga (ngā whakarerekētanga ira), arā, he hapa iti, kei roto i ngā ira i roto i te pūmua hemoglobin. Nā tēnei hapa ira, kāore e taea e tō tātou tinana te hanga tika i te pūmua beta-globin i roto i te hemoglobin.

He aha te pānga o te beta thalassemia ki tōku tinana?

Ina heke te hanga beta-globin o tō tātou tinana, ka pakaru ō tātou toto whero. Kātahi ka tangohia wawetia ēnei toto whero kua pakaru mai i te toto. Whakaarohia, he aha te mea ka tupu mēnā kāore e taea te hanga i ngā toto whero hou hei whakakapi i ngā mea kua ngaro? Ko te wā tēnā ka puta ai te anemia , te kore toto rānei.

Ka puta ngā tohu o te anemia ina kore e ranea ngā toto whero hei kawe i te hāora ki ngā kiko o tō tātou tinana. Kātahi ka kore e ranea te hāora e whiwhi i aua kiko. Ko ngā tohu o te anemia e puta mai ana me te beta thalassemia ka rerekē mai i te ngawari ki te kino , i runga i te iti o te maha o ngā toto whero.

Ko wai kei te mōrearea nui ake ki te whakawhanake i te beta thalassemia?

He mate ira tuku iho te beta thalassemia. Ko te tikanga ka riro i ngā tamariki te hapa ira e pā ana ki tēnei mate mai i ō rātou mātua. Ko te nuinga o te hunga e pangia ana e te beta thalassemia e noho ana i ngā whenua pēnei i a Āwherika, te rohe Mediterranean, te Middle East, Īnia me te Tonga-mā-rāwhiti o Āhia. Heoi, nā te hekenga mai o te ao, kei te pūrongohia ngā tūroro beta thalassemia i te Raki o Ūropi me Amerika Te Raki. Kei te kitea anō hoki tēnei mate i tō tātou whenua, i Sri Lanka.

He pēhea te noa o te beta thalassemia?

I mōhio koe ko te thalassemia te tino take o te anemia tuku iho? E mano tini ngā tūroro beta thalassemia hou e kitea ana i ia tau. Heoi, ko te rongo pai , nā te whakapainga ake o ngā mahi ārai pēnei i ngā tirotiro hei tautuhi i te hunga he hapa ira thalassemia, kua heke te maha o ngā keehi ki tētahi taumata .

He aha ngā take o te beta thalassemia?

Ko te tino take o te beta thalassemia he hapa ira (whakarerekētanga ira) e whakawhāiti ana i te hanga o te beta-globin i roto i tō tātou tinana. E ai ki tā mātou i kōrero ai, e whā ngā mekameka pūmua o te hemoglobin: e rua ngā mekameka alpha-globin me ētahi mekameka beta-globin e rua. Ko ngā hapa o te mekameka alpha-globin ka puta ai te alpha thalassemia, ā, ko ngā hapa o te mekameka beta-globin ka puta ai te beta thalassemia. Mena he iti tetahi o ēnei mekameka globin, ka pakaru, ka whakangaromia ngā toto toto whero.

Ka riro i a koe te hapa ira mō te beta thalassemia i roto i te tauira autosomal recessive . Ka puta tēnei ina kotahi te tārua o te ira hapa kei ngā mātua e rua, me tētahi tārua o te ira noa. I roto i te momo beta thalassemia tino kino, ka riro i a koe tētahi tārua o te ira hapa mai i ngā mātua e rua.

Heoi, he tino onge te putanga mai o te beta thalassemia mā te tuku iho i tētahi ira beta-globin hapa. Ka kiia tēnei he tauira autosomal dominant .

He aha ngā momo mate pukupuku beta thalassemia?

Ko te kaha o tō mate e whakawhirinaki ana ki te maha o ngā ira hapa i tukuna iho ki a koe me te wāhi o te hapa. Ko ētahi hapa ira kāore e puta he beta-globin (e kiia ana ko te beta-zero thalassemia ). Ko ētahi atu hapa ka iti noa te beta-globin e puta (e kiia ana ko te beta-plus thalassemia ).

Anei ētahi momo matua o te beta thalassemia:

• Beta thalassemia nui (Cooley's anemia): Koinei te momo beta thalassemia tino kino. I roto i tēnei, kua ngaro, kua he rānei ngā ira beta-globin e rua. Ka kiia te beta thalassemia nui ko te "transfusion-dependent thalassemia" nā te mea me whakawhiti toto te hunga whai mate nei mō te wā roa.
• Beta thalassemia intermedia: Ka taea e tēnei te whakaputa i te anemia ngawari ki te ngoikore. I roto i tēnei āhuatanga, kua ngaro, kua he rānei ngā ira beta-globin e rua. Heoi, ko te hunga whai beta thalassemia intermedia kāore e hiahiatia kia koha toto mō te toenga o ō rātou oranga.
• Beta thalassemia iti (te āhuatanga beta thalassemia rānei): He maha ngā wā ka puta ngā tohu anemia ngawari. I roto i tēnei, kotahi anake te ira beta-globin e ngaro ana, e hē ana rānei. Tērā pea ētahi tāngata he beta thalassemia iti kāore e whakaatu i tētahi tohu.

He aha ngā tohu o te beta thalassemia?

Ka whakawhirinaki ō tohu ki te kaha o tō beta thalassemia. Hei tauira, ko te tangata he beta thalassemia iti, kāore pea he tohu, he anemia tino ngawari rānei. Ko te hunga he beta thalassemia intermedia, inā koa ko te beta thalassemia nui, tera pea he tohu ngawari, he tohu kino ake rānei.

Ngā tohu ngawari

Ko te beta thalassemia iti (beta thalassemia trait) e hono pinepine ana ki ngā tohu o te anemia ngawari pēnei i:

• Te ngenge pinepine.
• Pōuri, ngoikore rānei .
• Te mamae o te upoko i ngā wā maha.
• Kiri mā .

Ngā tohumate ngawari me ngā tohumate kino

Ko ngā tohu tino kino e pā ana ki te beta thalassemia major. Ko ētahi o ēnei tohu, i runga i te kaha o tō mate, ka kitea pea i roto i te hunga whai beta thalassemia intermedia. Haunga ngā tohu ngawari ake, ka pāngia pea koe e:

• Te uaua ki te manawa i te wā e whakakorikori ana.
• Te pikinga ake o te tere o te ngakau ( palpitations ).
• Te kōwhai o te kiri, te mā rānei o ngā kanohi ( te jaundice ).
• He mimi pouri, he mimi tae tī rānei.
• Te puhoi o te tipu , te puhoi rānei o te whanaketanga.
• Te pupuhi o te puku .
• Te ngoikore, te hē rānei o ngā wheua o ngā ringa, ngā waewae, me te mata.

Ka tino noho pōrearea ngā pēpi nohinohi e pangia ana e te beta thalassemia āhua-waenga, kino rānei , ā, ka pāngia pea rātou e ngā mate urutā.

Me pēhea te tātaritanga o te beta thalassemia?

He maha ngā wā ka kitea te beta thalassemia i te tamarikitanga . Ko te momo tino kino, ko te beta thalassemia nui, ka kitea i mua i te rua tau te pakeke, arā, i te wā tamarikitanga. Ka kitea te beta thalassemia e tō tākuta i runga i ō tohu me ngā hua o te whakamātautau toto.

He aha ngā whakamātautau tātaritanga?

Mā tō tākuta e tātari te mate beta thalassemia mā te tango i tētahi tauira toto māmā, ka tātarihia. Kei roto pea i ngā whakamātautau:

• Tatau Toto Katoa (CBC): Mā te whakamātautau CBC ka kitea ngā mōhiohio e pā ana ki ō toto, tae atu ki ō toto whero. Ka taea e ia te whakaatu mēnā he iti ō toto whero, mēnā he iti iho i te tikanga, he āhua rerekē, he mā rānei (he whero mārama). He tohu pea ēnei tohu mō te thalassemia.
• Te maha o ngā reticulocytes: Ko ngā pūtau toto whero kāore anō kia pakari ka kiia ko ngā reticulocytes. Ko te iti o te maha o ngā reticulocytes ko te tikanga kāore tō tinana e hanga ana i ngā pūtau toto whero e ranea ana. Heoi, i roto i te thalassemia nui, ka piki ake te maha o ngā reticulocytes. Nā te mea kei te ngana tō tinana ki te hanga i ētahi atu pūtau toto whero hei utu mō te whakangaromanga o ngā pūtau toto whero me te hemoglobin rerekē.
• Whakamātautau ira ngota: Mā tēnei whakamātautau ka taea e tō tākuta te tirotiro tata i tō hemoglobin me te tautuhi i te hapa ira e pā ana ki te beta thalassemia.
• Te hiko o te hemoglobin: Ka ine tēnei whakamātautau i ngā momo pūmua hemoglobin rerekē i roto i tō toto. I roto i te beta thalassemia, ka piki ake ētahi momo pūmua hemoglobin, ko ētahi ka heke iho.

Mena kei te whakapaehia kua riro mai i tō pēpi kāore anō kia whānau te ira hapa, ka whakahaerehia pea e tō tākuta he whakamātautau e kiia nei ko te Chorionic Villus Sampling (CVS) ko te Amniocentesis rānei i te wā e hapu ana. Ka whakamātauhia e te CVS tētahi wāhanga o te whenua whānau hei rapu i ngā tohu o te hapa ira. Ko te whenua whānau te okana e āwhina ana i a koe me tō pēpi ki te whakawhitiwhiti matūkai i te wā e hapu ana. Ka whakamātauhia e te Amniocentesis te wai e karapoti ana i tō pēpi hei rapu i ngā tohu o te beta thalassemia.

Me pēhea te rongoā mō te beta thalassemia?

He maha ngā wā ka mahi tahi koe me tētahi tīma tiaki kei roto ko ngā tohunga maha. He mea nui rawa te mahi tahi me tētahi tohunga e rongoā ana i ngā mate e pā ana ki te toto, arā, he tohunga toto .

Ko ngā kōwhiringa maimoatanga pea ko:

• Ngā whakawhiti toto: Me tuku toto te tangata whai beta thalassemia nui i ngā wā katoa (tērā pea i ia rua wiki). I roto i tēnei tukanga, ka whiwhi toto koe mai i tētahi kaituku. Ka āwhina ngā toto whero mai i tēnei tuku toto ki te kawe i te hāora ki ngā kiko puta noa i te tinana.
• Whakaora chelation rino: He wāhanga nui te rino o te pūmua hemoglobin e āwhina ana ki te kawe hāora. Heoi, ki te nui rawa te rino ka kino pea. Ka taea e te whakaora chelation rino te ārai i te nui rawa o te rino.
• Ngā tāpiringa waikawa folic: Ka taea e te waikawa folic te āwhina i tō tinana ki te hanga i ngā toto whero. Mena he beta thalassemia iti tōu, ka tūtohu pea tō tākuta i tēnei tāpiringa. Mena he kino tō mate, me tango pea e koe te waikawa folic hei tāpiri atu ki te koha toto i ia wā.
• Luspatercept: Mena he thalassemia nui tōu, ka tukuna pea he werohanga e kīia nei ko te luspatercept i ia toru wiki hei āwhina i tō tinana ki te hanga i ētahi atu toto whero. Ka āwhina a Luspatercept ki te whakaiti i te anemia i roto i ngā tūroro beta thalassemia e tuku toto ana.
• Te whakawhitinga wheua me te pūtau take:Ka taea e koe te whiwhi pūtau take hinu wheua mai i tētahi kaituku. Ko ēnei pūtau take ka huri hei pūtau toto whero i muri mai. Ka taea te whakaora i te beta thalassemia mā te whakakapi i ō pūtau take hinu wheua ki ngā pūtau take mai i tētahi kaituku hauora. Heoi, he uaua te kimi i tētahi kaituku e ōrite ana. Waihoki, e kiia ana tēnei momo whakawhitinga he tikanga mōrearea nui.

He aha ngā raruraru, ngā pānga taha rānei o te maimoatanga?

Ko te raruraru tino noa o te tuku toto ko te nui rawa o te rino . Ina tuku toto koe, ka whiwhi tō tinana i ngā toto whero me te rino tāpiri. Ina tuku toto koe i ngā wā katoa, ka taea e tēnei rino tāpiri te hanga me te kino i ngā whekau nui pēnei i te ate, te ngākau, me te repeure. Mena he kaituku toto auau koe, kōrero ki tō tākuta mō te auau o te tango i te rongoā chelation rino hei tango i te rino tāpiri mai i tō tinana.

Me pēhea te whakaiti i te mōrearea o te whakawhanake i te beta thalassemia?

Kāore e taea e koe te whakaiti i tō tuponotanga ki te tuku iho i tētahi hapa ira e pā ana ki te beta thalassemia. Heoi, ka taea e koe te ārai i tāu tamaiti kei tuku iho i tēnei. Mena kei te mōrearea koe, tō hoa rānei, ki te noho hei kaikawe i tēnei hapa ira, ā, e tumanako ana koe kia whānau he tamaiti, kōrero ki tō tākuta mō te tirotiro i a koe mō te beta thalassemia.

Ka taea te rongoā i te beta thalassemia?

Ko te rongoā anake mō te beta thalassemia ko te whakawhitinga wheua me te pūtau take mai i tētahi kaituku ōrite. Heoi, he uaua te kimi i tētahi kaituku ōrite. Ahakoa ngā mema o te whānau, kāore pea rātou e kiia he kaituku tika.

Kei te rangahau ngā kairangahau i ētahi atu maimoatanga mō te beta thalassemia, pērā i te whakakapi i ngā ira hapa ki ngā ira hauora ( te whakaora ira ). Kei te tīmatanga tonu tēnei mahi.

He aha te roanga o te oranga o te tangata e pāngia ana e te beta thalassemia?

He mate ka taea te rongoā i te beta thalassemia. Ka taea e te hunga whai momo beta thalassemia ngawari me te momo waenga, pērā i te iti me te waenga, te tumanako i te roanga o te oranga noa mēnā ka whai rātou i ngā tohutohu maimoatanga a tā rātou tākuta. Heoi, ka taea e te beta thalassemia nui te whakapoto i ō rātou roanga oranga. Ko te tino take o te mate i roto i tēnei āhuatanga ko te ngoikore o te ngakau i puta mai i te nui rawa o te rino.

Kōrero ki tō tākuta mō tō matapae i runga i te kaha o tō mate.

He aha ngā pātai me pātai atu e au ki taku tākuta?

Pātai atu ki tō tākuta kia hia te auau o ngā whakamātautau toto me ngā maimoatanga e tika ana kia mahia, me ngā huringa āhua noho me mahi e koe hei whakahaere i tō mate.

Ko ētahi pātai ka taea e koe te pātai:

• He aha te momo beta thalassemia kei a au?
• He aha te momo maimoatanga e hiahiatia ana e au hei whakahaere i tōku āhua?
• Me pēhea te whakaiti i te mōrearea o ngā raruraru mai i te maimoatanga?
• Kia pēhea te auau o ngā whakamātautau toto hei aroturuki i tōku āhua?
• He aha ngā momo whakamātautau toto ka mahia e au?
• He aha ngā huringa āhua noho (hei tauira, te kai, te whakakori tinana) me mahi e au hei whakahaere i tōku āhua?
• He kaitono ahau mō te whakawhitinga pūtau take?
• He aha ngā tūponotanga ka pāngia hoki aku tamariki e te beta thalassemia?

Ko te kaha o tō mate ka pāngia koe e te beta thalassemia. Ahakoa te momo beta thalassemia, he mea nui kia mahi tahi me ngā tohunga e mōhio ana ki te tātaritanga me te rongoā i te thalassemia.

Mā te whiwhi i te maimoatanga tika ka ārai i te anemia me te whakaiti i te mōrearea o ngā raruraru pēnei i te taumaha rawa o te rino.

Mā te mahi tahi me tētahi tīma hauora e aroturuki ana i tō āhua me te whakarato i tētahi mahere tiaki ritenga ka āwhina i te whakapai ake i tō matapae.

Hei whakamutunga, ngā mea hei maumahara

Ehara te Beta Thalassemia i te mea hei wehi, engari he mate tēnei me whakahaere tika . Mena kei a koe, kei tētahi rānei e mōhio ana koe tēnei mate, he mea nui kia whai i ngā tohutohu hauora tika, kia whiwhi i ngā whakamātautau me ngā maimoatanga e tika ana . Kia maumahara, ehara i te mea ko koe anake, ā, kei reira ngā tākuta me ngā kaimahi hauora hei āwhina i a koe. Nō reira, kaua e wehi ki te kōrero ki a rātou mēnā he pātai āu. Ko te tumanako ka āwhina ēnei mōhiohio i a koe kia ora hauora!

Beta thalassemia, thalassemia, anemia, hemoglobin, whakarerekētanga ira, tuku toto, taumaha rawa o te rino