Ngā mea e tika ana kia mōhio koe mō te Thalassemia

Kua rongo koe i tētahi o tō whānau, i tētahi rānei e mōhio ana koe e kī ana he "mate toto kore" rātou? I ētahi wā ka ngenge tonu rātou, ka āhua mā, ka kōwhai hoki ō rātou kiri. He mate toto kore noa iho pea tēnei? Āe, kāore pea i te mea noa, he mate toto tuku iho pea e kiia nei ko te thalassemia. Kaua e mataku ina rongo koe i tēnei ingoa. Ehara tēnei i te mate hopuhopu. Me kōrero tātou mō ngā mea katoa i roto i te huarahi māmā, mārama hoki.

He aha tonu te thalassemia ?

He kupu ngāwari noa iho, ko te thalassemia he mate toto e riro mai ana i ō tātou mātua. Ko te tangata whai mate pēnei he iti iho i te mea noa te hanga o ngā toto whero hauora me te pūmua e kiia nei ko te hemoglobin .

Whakaarohia, ko ngā toto whero te ratonga tuku hāora e kawe ana i te hāora puta noa i ō tātou tinana. He rite te hemoglobin ki tētahi pouaka motuhake e tākai ana i taua hāora, e kawe ana hoki. I roto i te tangata e pangia ana e te thalassemia, he iti te rahinga o ēnei waka tuku (ngā toto whero) me ngā pouaka hāora (hemoglobin), he hapa rānei kei roto. Nō reira, kāore ngā wāhanga katoa o te tinana e whiwhi hāora nui ana. Ka kiia hoki tēnei he anemia .

He maha ngā ingoa rerekē o te thalassemia. Tērā pea kua rongo koe i ēnei ingoa:

• Te mate pūkahukahu ā-ira
• Beta thalassemia
• Te mate toto o Cooley
• Te mate toto o te Moana-nui-a-Kiwa

Me pēhea te whanaketanga o te thalassemia? Ko wai kei te mōrearea?

Ehara te Thalassemia i te mate e taea te hopu mā te kai, te wai, te mate rānei i tētahi atu tangata. He mate tēnei e tukuna iho ana mai i ngā mātua ki ngā tamariki mā roto i ngā ira.

E rua ngā wāhanga matua hei hanga i te pūmua e kiia nei ko te hemoglobin. Ko te alpha globin me te beta globin. Ko te "tohutao" mō te hanga i ēnei kei roto i ō tātou ira. Mena he hapa kei roto i ēnei ira (he hapa kei roto i te tohutao), e kore e taea e te tinana te hanga hemoglobin hauora e hiahiatia ana.

• Mena ka riro mai i a koe tētahi ira hapa i te mātua kotahi anake: Tērā pea he kaikawe koe. Ko te tikanga, kāore pea ō tohu, he iti noa iho rānei ō tohu, engari ka taea e koe te tuku i te ira hapa ki ō tamariki.
• Mena ka riro mai i a koe te ira hapa i ngā mātua e rua: Tērā pea ka pāngia koe e te thalassemia ngawari, whakaōrite, kino rānei.

He mea kitea nuitia tēnei mate i waenga i te iwi o ngā whenua Āhia pēnei i a Sri Lanka, te Middle East, Āwherika, me ngā whenua Mediterranean pēnei i a Kariki me Turkey.

He aha ngā momo matua o te thalassemia?

E rua ngā momo matua o te thalassemia, i runga i te wāhanga o te tauira hemoglobin he hapa.

Ngā Momo Waenga o te Alpha Thalassemia

• Tūnga kaikawe: Kotahi te ira hapa. Kāore he tohu.
• Alpha Thalassemia Minor: E rua ngā ira hapa. Kāore he tohu, he tino ngawari rānei.
• Mate Hemoglobin H: E toru ngā ira hapa. Ngā tohumate ngawari ki te kino.
• Alpha Thalassemia Nui: Kei a ia ngā ira hapa e whā. He mate tino kino tēnei. He maha ngā wā ka mate te pēpi i roto i te kōpū, i muri tata rānei i te whānautanga.

Ngā Momo iti o te Beta Thalassemia

• Beta Thalassemia Minor: Kotahi te ira hapa. Kāore he tohu, he ngawari noa iho rānei (āhua kawe).
• Beta Thalassemia Intermedia: E rua ngā ira hapa. He tohu āhua noa iho.
• Beta Thalassemia Nui / Cooley's Anemia: Te noho mai o ngā ira hapa e rua. He āhuatanga tino kino tēnei me ngā tohu.

He aha ngā tohu o te thalassemia?

Ko ngā tohumate e whakawhirinaki ana ki te momo thalassemia kei a koe me tōna kaha. Tērā pea kāore he tohumate o ētahi tāngata. Mō ngā momo mate kino, ka puta ngā tohumate i mua i te rua tau te pakeke o te tamaiti.

Koinei ētahi o ngā tohu e kitea whānuitia ana:

• Te ngenge nui me te ngenge
• Te uaua ki te manawa , te wheezing
• Pōuri me te ngoikore
• Kiri mā, kiri kōwhai rānei
• Mimi pouri
• Hiahia kai
• Te tipu puhoi me te whakaroa i te pakeketanga o ngā tamariki
• Te āhua rerekē o te kanohi (ina koa te rae me ngā paparinga e kitea nuitia ana)
• Te puku e pupū ake ana (nā te nui haere o te ate, te whēkau rānei)
• Ngā mamae o te upoko
• Te ngoikore o ngā wheua me te whati ngāwari

Me pēhea te mōhio mēnā kei a koe te thalassemia?

I te nuinga o te wā, ki te kore he tohu, ka kitea pea te mate i roto i te whakamātautau toto o ia rā mō tētahi atu take. Mena he tohu āu, ka tirotirohia koe e tō tākuta, ka pātai atu mō tō hītori hauora whānau.

I muri i tēnā, ka tūtohutia kia mahia ētahi whakamātautau toto motuhake, pēnei i:

• Te Tatau Toto Katoa (CBC): Ka ine tēnei i te nui o ngā toto whero me te hemoglobin i roto i te toto. He iti noa iho ēnei i roto i ngā tūroro thalassemia.
• Te Hikohiko o te Hemoglobin: Ka taea e tēnei te whakatau ko ēhea ngā momo hemoglobin kei roto i ō toto me te nui o ia momo.
• Whakamātautau Ira: Mā tēnei whakamātautau ka taea e koe te tautuhi i te momo thalassemia kei a koe.

Te tātaritanga i te wā e hapu ana

Mena he kaimau koe, tō hoa rānei i te mate thalassemia, ka taea e koe te whakamātautau i tāu pēpi mō te mate i mua i tōna whānautanga.

• Te Tātaritanga o ngā Villus Chorionic (CVS): Ka tangohia he tauira iti o te whenua whānau ka whakamatautauria i te 11 wiki pea o te hapūtanga.
• Amniocentesis: I te 16 wiki pea o te hapūtanga, ka tangohia he tauira o te wai amniotic e karapoti ana i te pēpi, ka whakamatautauria.

Mena ka kitea tēnei mate, ka tukuna koe ki tētahi tohunga toto.

He aha ngā maimoatanga mō te thalassemia?

Ko te maimoatanga e whakawhirinaki ana ki te kaha o te mate. Tērā pea kāore he maimoatanga e hiahiatia ana mō te tangata he mate ngawari pēnei i te thalassemia minor, engari mō ngā mate kino rawa atu, me maimoatanga mō te wā katoa.

Ko ngā tikanga maimoatanga matua ko:

1. Ngā Whakawhiti Toto

Me whakawhiti toto ngā tūroro e pangia ana e te thalassemia kino kia whiwhi ai rātou i ngā toto whero hauora me te hemoglobin. I te nuinga o te wā me whiwhi rātou i ngā whakawhiti toto i ia 2-4 wiki . Mā tēnei ka whiwhi rātou i te kaha ki te haere tonu i ā rātou mahi noa me te kore e ngenge.

2. Te Whakaora Chelation

Nā te tuku toto pinepine me ngā āhuatanga hauora, ka piki haere te nui o te rino i roto i te tinana, me te kore e tika. Ka kiia tēnei he "Tapeke Rino". Ka taea e tēnei rino tāpiri te kohikohi i roto i ngā whekau nui pēnei i te ngākau me te ate, ka kino ai.

3. Ētahi atu maimoatanga

• Te Whakatō Huango Wheua, te Whakatō Pūtau Taketake rānei: I ētahi wā ka taea e te whakatō huango wheua mai i tētahi kaituku hauora te whakaora katoa i te thalassemia. Heoi, kāore i te maha ngā wā e mahia ana tēnei nā te mea he mōrearea, he uaua hoki ki te kimi i tētahi kaituku hototahi.
• Pokanga: He nui te whēkau o ētahi tūroro, ā, me tango pokanga (splenectomy).
• Ngā Rongoā: Ka whakamahia ngā rongoā pēnei i te `Luspatercept (Reblozyl)` me te `Hydroxyurea` hei āwhina i te whakaputa i ngā toto whero me te whakahaere i ngā tohumate.
• Ngā Tāpiringa: Ka tūtohu pea tō tākuta i ngā huaora pēnei i te waikawa folic, e āwhina ana ki te hanga i ngā toto whero. Heoi, kaua e tango i ngā tāpiringa rino me te kore he tohutohu hauora mō tētahi take.

Me pēhea te noho hauora me te thalassemia?

He mea tino nui te tiaki i ēnei mea kia ora hauora ai, kia harikoa ai hoki te tangata e pangia ana e te thalassemia.

• Whāia ngā tohutohu a tō tākuta: Whāia te maimoatanga a tō tākuta kia rite ki te mea i whakaritea, i te wā tika, ā, kia tino haere ki ngā wāhi rongoā.
• Kai hauora: Kai i tētahi kai taurite me te nui o ngā hua me ngā huawhenua. Pātai atu ki tō tākuta mēnā me whakawhāiti koe i ngā kai he nui te rino (mīti, ika, pīni) me ngā kai he nui te rino.
• Werohia: Me werohia ngā werohanga katoa i tūtohutia e tō tākuta, inā koa ko ērā pēnei i te werohanga rewharewha, nā te mea ka nui ake pea tō tūponotanga ki te pangia e ngā mate.
• Whakangungu:Whakakorikori tinana māmā e pai ana mō tō tinana. Kōrero ki tō tākuta mō tēnei.
• Te Ma: Me noho tawhiti atu i te hunga e mate ana. Horoia ō ringaringa i ngā wā katoa.
• Āta karohia te kai hikareti me te waipiro: He kino ēnei mō tō ngākau me ō wheua.
• Hauora hinengaro: Ka taea e te noho me te mate pūmau te whakararu i te kare ā-roto. Mena kei te pōuri koe, kei te pāngia rānei e te ahotea, kōrero ki te whānau, ki ngā hoa, ki tētahi kaitohutohu hauora hinengaro rānei.