Kua rongo pea koe i te kupu "anemia" me te "anemia" rānei, tika? He kupu ngāwari tēnei, ina kore e nui ngā toto toto whero e hangaia e te tinana, ina kore rānei e mahi tika ngā toto toto whero. Ko ngā toto toto whero ngā kaikawe matua o te hāora puta noa i ō tātou tinana. Nō reira, ina iti, ka taea e tātou te ngenge me te ngoikore i ngā wā katoa. Ka hangaia ēnei toto toto whero i roto i te hinu wheua, he kiko ngohengohe, he hautai i roto i ō tātou wheua. Ko te Diamond-Blackfan Anemia (DBA) he momo anemia motuhake e puta ana ina kore e taea e te hinu wheua te hanga i ngā toto toto whero.
He aha te take o te mate kore toto Diamond-Blackfan (DBA)?
Ko te mate toto Diamond-Blackfan, e kiia ana i ētahi wā ko te "acquired pure red cell aplasia", ka tātaritatia e ngā tākuta i mua i te kotahi tau te pakeke o te tamaiti. Ko te tino take o tēnei ko ngā huringa, ko ngā whakarerekētanga rānei, o ngā ira e hanga ana i te tinana.
Kia maumahara, i ētahi wā ka taea tēnei hapa ira te tuku iho i te whaea, i te pāpā rānei. Engari ehara i te mea koinei tonu te āhua. Ka taea hoki e ētahi ira o ngā tamariki te huri noa, kāore he take. Ko te nuinga o ngā tamariki whai DBA kei a rātou tēnei mate nā te whakarerekētanga ira hou. Nō reira, hei mātua, kāore he take e manukanuka ai mō tēnei. Ahakoa kua kitea he take ira motuhake mō te tata ki te haurua o ngā tūroro DBA, mō ētahi tāngata, kāore anō kia kitea he take motuhake mō tēnei mate.
He aha ngā tohu o te DBA?
Tērā pea ka pāngia ngā tamariki whai DBA e ngā tohu maha o ētahi atu momo anemia. Arā,
- Ngenge tonu
- Kiri mā
- Te ngoikore o te ngākau
Haunga ēnei āhuatanga noa, ko ētahi tamariki i whānau mai me te DBA, tera pea he āhuatanga motuhake kei ō rātou mata me ō rātou tinana. Me titiro tātou ki ēnei āhuatanga.
| Wāhanga tinana | Ngā āhuatanga e kitea ana |
|---|---|
| Upoko | He iti ake te upoko i te mea noa. |
| Kanohi | Te tawhiti kua piki ake i waenga i ngā kanohi me te ihu papatahi. |
| Taringa | E rua ngā taringa iti kua whakatakotoria ki raro iho i te mea noa. |
| Kauae | He iti te kauae o raro. |
| kaki | He kaki poto, he whatuwhatu. |
| Ngā pakihiwi | Ngā mata pakihiwi iti. |
| Ringaringa | Ngā koromatua āhua rerekē. |
| Waha | He ngutu ngatata, he waha whati rānei. |
Hei tāpiritanga, ka taea e te DBA te whakararu i ngā mate tākihi , ngā mate ngākau , me ngā mate kanohi pērā i te katarata me te glaucoma . Ka taea hoki e ngā tama te whakawhanake i tētahi mate whānau e kiia nei ko te hypospadias, arā, ko te wāhi e puta ai te mimi kāore i te pito o te ure.
Me pēhea te tautuhi tika i tēnei mate?
Ka taea e tō tākuta te whakahaere i ētahi whakamātautau hei whakatau mēnā he DBA tō tāu tamaiti. He iti te maha o ngā toto whero o ngā tamariki he DBA, engari he noa te maha o ngā toto mā me ngā pereti toto.
Ko te mea nui kia kaua e mataku ina kite koe i ēnei tohu, engari me toro atu ki tētahi tākuta whai tohu i te wā e taea ai. Māna e whakahaere ngā whakamātautau e tika ana, ā, māna anō e hoatu ki a koe ngā mōhiohio tino tika.
Koinei ētahi o ngā whakamātautau matua e whakahaerehia ana e te tākuta.
| Whakamātautau | He aha te mea e rapua ana e ia? |
|---|---|
| Tatau Toto Katoa (CBC) | He maha ngā mea e inehia ana i roto i te toto, pērā i te maha o ngā toto whero, ngā toto mā, ngā pereti toto, te pūmua hemoglobin e kawe ana i te hāora, me te rahinga o ngā toto whero (hematocrit) . |
| Te maha o ngā retikulosit | Mā tēnei ka ine i te maha o ngā pūtau toto whero kāore anō kia pakari, ngā pūtau toto hou rānei. Mā tēnei ka taea te mōhio mēnā kei te tika te hanga o ngā pūtau toto whero e te hinu wheua. |
| Te tirotiro i te taumata eADA | Tata ki te 80% o te hunga whai DBA he nui ake ngā taumata o te whākōkī e kiia nei ko te erythrocyte adenosine deaminase (eADA) . Koinei te mea e rapuhia ana e tēnei whakamātautau. |
| Ngā taumata hemoglobin o te kōpū | Koinei te momo hemoglobin o ngā pēpi i roto i te kōpū. Me heke iho i muri i te whānautanga. Heoi, tera pea ka teitei tonu ngā taumata o ngā tamariki whai DBA i a rātou e pakeke haere ana. |
| Te tango i te hinu wheua me te koiora | Ka tangohia he iti noa ngā pūtau me te wai mai i te hinu wheua mā te whakamahi i te ngira, ā, ka whakamatautauria. He iti noa iho ngā toto whero hauora o ngā tamariki whai DBA i roto i ō rātou hinu wheua. |
| Ngā whakamātautau ira | Ka whakamātautauhia e tēnei ngā ira e pā ana ki te DBA, ki ētahi atu mate toto iti rānei i tukua iho mai i ngā mātua. |
He aha atu ngā raruraru ka puta mai i te DBA?
He nui ake te tūponotanga o te hunga whai DBA ki te pāngia e ētahi mate me ngā āhuatanga. Kei roto i ēnei ko ngā mate pukupuku o te toto me te hinu wheua (acute myeloid leukemia), te mate pukupuku wheua (osteosarcoma), me ētahi atu mate e kore ai e taea e te hinu wheua te hanga pūtau toto hauora (myelodysplastic syndrome). Engari kaua e manukanuka ki tēnei. Kei te aroturuki tonu ngā tākuta i tēnei, kia taea ai e koe te tango i ngā mahi hauora e tika ana i te wā tika.
He aha ngā maimoatanga mō tēnei?
Koinei te wāhanga tino nui, tino whakamarie hoki. Ka taea e ngā tamariki kua tāpaetia he DBA te ora roa, te angitu hoki me te maimoatanga hauora. Ka hoki ētahi tamariki ki te wā e memeha katoa ai, arā, ka ngaro ngā tohu mō tētahi wā.
Ko ngā maimoatanga matua e rua e whakamahia ana ko ngā rongoā corticosteroid me ngā whakawhiti toto.
- Ngā rongoā corticosteroid: Ka whakaohokia e ngā rongoā pēnei i te '(Prednisone)' te hinu wheua, ā, ka āwhina i a ia ki te hanga i ētahi atu toto whero.
- Te whakawhiti toto: He kōwhiringa pai tēnei mēnā kāore e whai hua ngā rongoā steroids, mēnā rānei he kino te anemia. Ko te tikanga o tēnei ko te hoatu toto, toto whero rānei ki te tamaiti mai i tētahi kaituku hauora.
- Te whakawhitinga wheua/pūtau take: Koinei anake te maimoatanga whakaora mō te DBA. Heoi, he ahua mōrearea. Waihoki, he uaua pea te kimi i tētahi kaituku e ōrite ana.
He mea nui kia kōrero mārama koe ki tō tākuta mō ēnei kōwhiringa maimoatanga katoa, ō rātou painga me ō rātou huakore, kātahi ka whiriwhiri i te mea pai rawa atu mō tāu tamaiti.
Karere Tangohia ki te Kāinga
- Ko te Diamond-Blackfan Anemia (DBA) he mate ira onge i roto i ngā tamariki, ina kore e taea e te hinu wheua te whakaputa i ngā toto whero e ranea ana.
- Haunga ngā tohu noa pēnei i te ngenge pinepine me te kiri mā, ka taea hoki e tēnei mate te whakaputa i ētahi āhuatanga motuhake o waho ki te mata me te tinana.
- Ka taea e te tākuta te tautuhi tika i tēnei mate mā roto i ngā whakamātautau toto me te whakamātautau hinu wheua.
- Mā ngā maimoatanga pēnei i ngā rongoā steroids me ngā whakawhiti toto ka āwhina i ngā tamariki kia roa te ora, kia ora hauora hoki. Ko te whakawhitinga wheua te maimoatanga whakaora anake.
- Ki te mea he iti noa iho te whakapae kei te pāngia tō tamaiti e ēnei tohu, kaua e mataku , engari me toro atu ki tētahi tākuta tamariki tonu. He mea tino nui te tere o te tautuhi me te maimoatanga.
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