Ina kī mai te tākuta ki a koe, ki tāu tamaiti rānei, he mate toto tōu e kiia nei ko te Beta Thalassemia, he mea nui kia mōhio koe ki te momo mate kei a koe. Nā te mea ko te momo mate kei a koe ka whakatau i ngā tohu me te maimoatanga e hiahiatia ana e koe. Tērā pea ka mataku koe ina rongo koe i tēnei ingoa. Engari kaua e manukanuka, ka whakamāramahia e mātou ngā mea katoa me te mārama, me te ngāwari hoki.
He aha te tikanga o te beta thalassemia?
He mate ira te beta thalassemia e pā ana ki ō tātou toto. Āe, kia titiro tātou me pēhea tēnei e puta ai i roto i te tinana.
Kei roto i ngā toto whero o roto i ō tātou toto he pūmua motuhake e kiia nei ko te hemoglobin . Koinei te waka e tango ana i te hāora mai i ngā pukahukahu ka tohatoha ki ngā pūtau puta noa i te tinana. He rite ki te ratonga tuku hāora. I roto i te tangata he beta thalassemia, kāore tēnei pūmua hemoglobin e hangaia kia rite ki te nui e hiahiatia ana. Ko te take o tēnei he huringa, he whakarerekētanga rānei, i roto i tētahi ira e pā ana ki te hanga hemoglobin (ira HBB).
Ina heke te hemoglobin, kāore ngā pūtau o te tinana e whiwhi i te nui o te hāora e hiahiatia ana. Koinei te take e puta ai ngā tohu rerekē. E toru ngā momo matua o tēnei mate. Me titiro takitahi tātou ki ia momo.
1. Beta Thalassemia e whakawhirinaki ana ki te whakawhiti toto
Ka kiia hoki tēnei ko te Thalassemia Major . Koinei te momo thalassemia tino kino . Ka puta noa tēnei āhuatanga mēnā ka riro i te tamaiti ngā tārua ira kua whakarerekētia e rua o te mate mai i ngā mātua e rua.
Ko te tikanga ka kitea te mate o te tamaiti kua pāngia e tēnei mate i mua i te rua tau te pakeke .
Hei mātua, e mōhio ana mātou he tino uaua te aro atu ki te rongonga kua pāngia tō tamaiti e te mate kino. He mea noa te pōuri me te manukanuka. Kaua e noho mokemoke i tēnei wā. Kōrero ki tō whānau me ō hoa mō tēnei. He puna nui tō rātou tautoko hei whakakaha. Waihoki, ki te pōuri koe, ki te manukanuka hoki, tonoa tō tākuta kia tukuna koe ki tētahi kaitohutohu hauora hinengaro. Kāore he mea hei whakama, ā, he mea nui kia kaha tonu mō tāu tamaiti.
He aha ngā tohu ka kitea i roto i tēnei āhuatanga?
- Te toto toto nui: Nā te iti rawa o te hemoglobin, ka ngenge tonu te tamaiti, ka ngenge hoki. Tērā pea ka kitea he kiri mā.
- Te tipu pōturi: He tino puhoi te tipu o te pēpi ki te whakaritea ki ētahi atu tamariki.
- Te whakanui ake i te whēkau me te ate:I te mea ka kohia te tini o ngā pūtau toto whero kua pakaru ki roto i te whēkau me te ate, ka āta whakanuia haeretia ēnei whekau i roto i te wā.
- Te ngoikore o ngā wheua: I te mea me hanga e te hinu wheua he nui ake ngā toto whero, ka pupuhi te hinu wheua, ā, ka angiangi, ka pakarukaru hoki ngā wheua.
- Te roa o te pakeketanga: I a koe e pakeke haere ana, ka roa pea te pakeketanga nā te pānga ki te mahi a ngā homoni.
- Tērā pea ka piki ake te mōrearea o te mate huka me te toto totoka i te pakeketanga.
Ngā tikanga maimoatanga
Hei whakahaere i tēnei mate toto nui, he mea nui te whakawhiti toto auau . Heoi, ki te haere tonu te tuku toto, ka piki haere te nui o te rino i roto i te tinana, me te kore e hiahiatia. Ka taea e tēnei rino tāpiri te kino i te ate, te ngākau, me te pūnaha endocrine.
Hei ārai i tēnei, ka whakamahia he maimoatanga e kiia nei ko te Iron Chelation Therapy . He māmā noa iho, ka tangohia te rino nui kua kohia i roto i te tinana. He rongoā kei te hoatu mō tēnei.
2. Beta Thalassemia e kore e whakawhirinaki ki te whakawhiti toto
Ka kiia hoki tēnei ko te Thalassemia Intermedia . Kāore ngā tohu o tēnei i te tino kino pērā i ngā tohu o te Thalassemia Major kua whakahuatia i mua.
I te nuinga o te wā, ka kite te tangata whai mate pēnei i te tākuta nā te mea he raruraru pēnei i te ngenge tonu, te kōwhai o te kiri (jaundice), te kore rānei e tupu pai.
Ngā tohu ka kitea i roto i tēnei āhuatanga
- Te whakanui ake i te whēkau.
- Te pakeketanga kua roa.
- Ngā wheua ngoikore me te mōrearea o te whati ngāwari.
- Te ngenge i puta mai i te anemia.
Nā te mea kāore i te tino kino ngā tohu o tēnei mate, kāore e hiahiatia te whakawhiti toto auau . Kāore pea koe e hiahia ki te tuku toto mō te toenga o tō oranga. Engari kei tō tākuta te whakatau.
3. Beta Thalassemia Iti
Ka kiia hoki tēnei ko te "Tholassemia Treat." I tō tātou whenua, he tokomaha e kī ana i tēnei mate ko te "kaimau Thalassemia".
Koinei te momo thalassemia ngawari rawa atu . Tērā pea kāore he tohu o te tangata whai mate pēnei i tua atu i te anemia ngawari . He maha ngā tāngata e ora ana mō ngā tau maha me te kore e mōhio kei a rātou te mate. I ētahi wā ka kitea noa iho i te wā e whakamātautauhia ana te toto mō tētahi atu mate.
Kāore tēnei āhuatanga e hiahiatia he maimoatanga auau ki te kore koe e ngenge, e tino ngenge rānei.
Ahakoa kāore he tohu o te mate, he mea nui kia mōhio koe he kawe koe i te mate Thalassemia. Ina koa mēnā kei te marena koe , kei te whakaaro rānei koe ki te whānau tamariki. Nā te mea mēnā he kawe anō hoki tō hoa rangatira i te mate Thalassemia, kotahi i roto i te whā (25%) te mōrearea ka pāngia tō tamaiti e te mate Thalassemia Major, he mate kino. Koia te mea nui kia kōrero koe ki tō tākuta mō tēnei mea, kia whakamātauria hoki.
| Momo Thalassemia | Te Hiranga | Ngā tohu matua me te maimoatanga |
|---|---|---|
| Thalassemia Nui | Tino nui | Te toto toto nui, te tipu pōturi. He mea nui te whakawhiti toto auau me te rongoā chelation rino. |
| Te mate waenga o te Thalassemia | Tino kino | Te toto toto iti, te ngenge. He maha ngā wā kāore e hiahiatia he whakawhiti toto auau. |
| Thalassemia iti (Iti/Tūāhua) | Kāore i te kino (tūnga o te kaikawe) | He maha ngā wā kāore he tohu. Kāore he maimoatanga e hiahiatia ana. Engari he mea nui te mōhio ki tēnei i roto i te whakamahere whānau. |
Karere Tangohia ki te Kāinga
- He mate tuku iho te beta thalassemia e whakaiti ana i te hanga hemoglobin.
- E toru ngā momo matua o tēnei: te nui (kino), te waenga (waenga), me te iti (ngāwari/waenga).
- Ko te thalassemia nui e hiahiatia ana he whakawhiti toto auau me te rongoā tango rino.
- Mena he thalassemia minor tōu (he kaikawe), kāore pea ō tohumate e pā mai. Heoi, he mea nui te mōhio mena he kaikawe anō hoki tō hoa rangatira mena kei te hapu koe i tētahi pēpi hauora.
- Kaua e whakama, kaua hoki e wehi ki te kōrero noa ki tō tākuta mō te momo thalassemia kei a koe, tōna maimoatanga, me ō pātai katoa.
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