Kei a koe, kei tāu tamaiti rānei te thalassemia? Me kōrero tātou mō te Beta Thalassemia

He ngenge, he ngoikore tonu rānei tōu ngenge? I ētahi wā ka whakaaro tātou he mea noa ēnei mea, engari kei muri i ēnei mea, tera pea he mate e pā ana ki te toto. Ko te Beta Thalassemia he mate e tukuna iho ana i roto i ō tātou ira, engari ka taea te rongoā. He maha ngā tāngata e mataku ana, e ruarua ana mō tēnei. Nō reira, i tēnei rā, me kōrero mārama, me te ngāwari hoki mō tēnei.

He aha te tikanga o te beta thalassemia?

He tino māmā noa iho. Kei roto i ō tātou toto ngā pūtau e kiia nei ko ngā toto whero. Ko ēnei pūtau te kawenga mō te kawe i te hāora ki ngā wāhanga katoa o tō tātou tinana. He pūmua motuhake kei reira e āwhina ana i ngā toto whero ki te mahi tika i tēnei mahi, e kiia nei ko te hemoglobin .

Ināianei, i roto i te tangata e pangia ana e te beta thalassemia, kāore e nui te pūmua e whakaputaina ana e te tinana e kiia nei ko te hemoglobin. Ka ahatia? Kāore e taea e ngā pūtau toto whero te mahi tika i tā rātou mahi, ā, ka tere te whakangaro.

Ina kore e ranea ngā toto whero hauora, kāore te tinana e whiwhi i te hāora e hiahiatia ana. Ka kiia tēnei mate he anemia . Ka taea e te anemia te whakapouri i a koe, te ngoikore, me te poto o te manawa. Ki te haere tonu tēnei mate, ka taea hoki te kino i ngā whekau nui o te tinana.

He aha ngā momo matua o te beta thalassemia?

E toru ngā momo matua o te beta thalassemia, i runga i tōna kaha. He mea tino nui kia mārama tika ki tēnei.

He aha ngā tohu o tēnei mate?

Ka rerekē ngā tohu i ia tangata, i ia tangata, i runga i te momo thalassemia kei a koe me tōna kaha.

• Kāore pea he tohu o te mate thalassemia minor i te tangata.
• Tērā pea ka pāngia te hunga whai thalassemia intermedia me te major e tētahi, e ētahi rānei o ngā tohu e whai ake nei:
• Kiri mā: He mā te kiri, he memeha te tae nā te kore toto.
• Te ngenge nui me te ngoikore: Te ngoikore, te ngenge tonu.
• Pupuhi puku: Ka pūwero whakamua te puku nā te nui haere o ngā whekau pēnei i te ate me te whēkau.
• Mimi pouri: Ka pouri te tae o te mimi.
• Te whakaroa o te tipu: Ka puhoi ake te whanaketanga tinana o ngā tamariki i ērā atu tamariki.
• Ngā āhua rerekē o te wheua kanohi: I ētahi wā kino, ka puta he panoni ki te āhua o ngā wheua kanohi.
• Te kiri māwhero: Te kōwhai o te kiri me te mā o ngā kanohi.

Me pēhea te tautuhi i tēnei mate?

Ko te nuinga o te wā ka kitea tēnei mate i waenga i te 6 me te 12 tau te pakeke. Ka kitea pea i te wā e toro atu ana koe ki te tākuta nā ngā tohu o te anemia, i te wā rānei e whakamātautau toto ana mō tētahi atu take.

I ētahi wā, ina kite koe i te anemia, ka whakaaro hē pea koe ko te koretake o te rino te take. Ki te hoatu e koe he pire rino i taua wā, ka kino pea ki te tūroro thalassemia. Nō reira, he mea tino nui kia toro atu ki te tākuta toto hei tātaritanga tika i te mate.

Nā te mea ka horapa i roto i ngā whānau, tera pea kei roto i tō whānau, i ō whanaunga rānei te hunga e pangia ana e te thalassemia. Waihoki, he nui ake te kitea o tēnei mate i roto i ngā tāngata nō ngā whenua pēnei i a Āhia, te Middle East, Itari, me Kariki.

Ko ētahi o ngā whakamātautau matua e whakamahia ana hei tautuhi i te mate ko:

• Te Tatau Toto Katoa (CBC): Mā tēnei ka tirohia te maha, te rahi, me te pakari o ngā toto whero, ngā toto mā, me ngā pereti toto i roto i ō toto.
• Te hiko o te hemoglobin: Ka whakamahia tēnei hei kimi i ngā momo hemoglobin kei roto i ō toto me te nui o aua mea.
• Ngā whakamātautau mō ngā whaea hāpu: Mena he whaea hāpu te mate thalassemia, ka taea te whakahaere i ngā whakamātautau pēnei i te Chorionic villus sampling (CVS) me te Amniocentesis hei whakatau mena kua pāngia hoki te pēpi i roto i te kōpū.

He aha ngā maimoatanga?

Ko te maimoatanga ka whakawhiwhia ki a koe ka whakawhirinaki ki te momo thalassemia me tōna kaha.

• Mō te hunga he māmā noa iho ngā mate (Iti): Kāore pea he maimoatanga e hiahiatia ana.
• Mō te hunga kei roto i te āhua waenga: I ētahi wā, pērā i te wā e pā mai ana he mate, he mate pāwera rānei, ka hiahiatia pea he whakawhiti toto.
• Mō te hunga e tino pāngia ana e te mate (Major): Nā te mea he nui te toto toto o ēnei tāngata, he mea nui te whakawhiti toto auau .

Mā te tuku toto i ngā wā katoa ka hua ake he nui rawa te rino i roto i te tinana. Ka kiia tēnei ko te "Iron overload". Ka taea e tēnei rino nui te hanga i roto i ngā whekau pēnei i te ngākau me te ate, ā, ka kino i a rātou. Hei ārai i tēnei, ka mahia he maimoatanga hei tango i te rino nui mai i te tinana. Ka kiia tēnei ko te iron chelation therapy . Ka hoatu tēnei hei pire, hei werohanga rānei.

Hei tāpiri, ka taea te whakamahi i ngā maimoatanga e whai ake nei e ai ki te tohutohu a tō tākuta:

• Te pokanga tango i te whēkau.
• Te whakawhitinga wheua .
• Ngā maimoatanga hou pēnei i te rongoā ira .

Me pēhea te noho hauora me te thalassemia?

Ahakoa he uaua te noho me te thalassemia, he maha ngā mea ka taea e koe te mahi hei tiaki i a koe anō.

Ngā mea ka taea e koe te mahi

• Kai hauora: Kai atu i ngā hua me ngā huawhenua. Heoi, pātai atu ki tō tākuta mēnā me whakawhāiti koe i ngā kai he nui te rino (mīti, ika, ētahi huawhenua, me ngā witi kua whakakahangia ki te rino) .
• Whakakorikori tinana auau: Whakakorikori tinana mārie pērā i te hikoi me te eke pahikara.
• Whāia ngā tohutohu hauora: Whāia ngā rā e koha toto ana koe me ngā wā e tango ana koe i tō rongoā kia tika. Tirohia tō tākuta i ngā rā kua whakaritea.
• Tiakina koe i ngā mate urutā: Horoia ō ringaringa i ngā wā katoa. Me noho tawhiti atu i te hunga e mate ana.
• Werohia: Me werohia ngā werohanga katoa i tūtohutia e tō tākuta, pērā i te werohanga rewharewha, i te wā tika.
• Whakaarohia tō hauora hinengaro: He uaua ki te haere ko koe anake i tēnei haerenga. Kōrero ki tō whānau me ō hoa. Ki te tika, rapua te āwhina a te tohunga hinengaro, te tohunga hinengaro rānei.

He tohutohu mō ngā kaitiaki

Mena ko koe te kaitiaki o tētahi tamaiti, o tētahi mema rānei o te whānau e pāngia ana e te thalassemia, he mea tino nui tō tūranga.