Kua kite koe i ētahi panoni, i ētahi āwangawanga rānei mō te āhua o ngā ira tangata o tāu tamāhine hou? Kei te tīmata rānei tāu tamaiti iti ki te whakaatu i ngā tohu o te pakeketanga i mua i tōna rā whānau? Kei te ruaki pea tāu tamaiti, kei te pupuhi, kei te ngenge noa rānei? I tēnei rā ka kōrero tātou mō tētahi āhuatanga ira ka puta ai ēnei mea. Ka huaina tēnei ko te Congenital Adrenal Hyperplasia, ko te CAH rānei hei whakarapopototanga. Kaua e manukanuka, tera pea he ahua uaua te ingoa, engari kia māmā noa iho.
He aha te tikanga o te kupu CAH?
Āe, me titiro tuatahi tātou ki te aha te CAH. E rua ngā repe o tātou katoa, he rite ki ngā potae iti, kei runga ake i ō tātou whatukuhu. Koinei ngā mea e kiia nei e tātou ko ngā repe adrenal. Ka whakaputahia e ēnei repe iti e rua ētahi homoni tino nui e tika ana mō te mahi a tō tātou tinana.
- Cortisol: Koinei te homoni ahotea matua i roto i tō tātou tinana. Ka whakarite i te tinana ki te aro atu ki ngā mate, ki ngā tūponotanga, me te ahotea. Ka āwhina hoki ki te whakahaere i te toto toto, ngā taumata pūngao, me ngā taumata huka toto.
- Aldosterone: Ka āwhina tēnei homoni ki te pupuri i te toenga tika o te tote (konutai) me te wai i roto i ō tātou tinana, mā reira ka whakahaere i te toto toto me te nui o te toto.
- Ngā Androgens: Koinei ngā homoni tāne. Ko te Testosterone tētahi o aua homoni. He mea tino nui ēnei homoni mō te tīmatanga o te pakeketanga, te tipu me te whanaketanga noa.
Nā, ko te mea ka pā ki te tangata whai CAH, ko te ngaro, te whakaiti rānei i roto i te tinana o tētahi whākōkī motuhake e hiahiatia ana hei whakaputa i ēnei homoni. Pērā i te ngaronga o tētahi mea kakara i tētahi rihi, ka rerekē te reka o te rihi, ina ngaro tēnei whākōkī, kāore e taea e ngā repe adrenal te whakaputa tika i ēnei homoni.
Nā, he aha te mea ka tupu?
- Kāore pea te homoni cortisol e hangaia ana i te nui e tika ana.
- Kāore pea te homoni aldosterone e hangaia ana i te nui e tika ana.
- Engari, ka tīmata te whakaputa nui rawa o ngā homoni tāne e kiia nei ko ngā androgens .
Ko tēnei kore taurite o ngā homoni te pūtake o ngā raruraru katoa e puta ake ana i te CAH.
He momo matua o te CAH?
Ae, e rua ngā momo matua o te CAH. 95% o ngā tūroro kua tātaritatia ka taka ki roto i ēnei momo e rua.
1. CAH Matarohia: Koinei te momo CAH tino kino rawa atu, tino kino hoki. I te nuinga o te wā ka kitea i te whānautanga mai. Ki te kore e rongoatia tika, ka taea e ia te arahi ki te ohorere, te koma, tae atu ki te mate. Nō reira, he mea tino nui te tautuhi me te rongoā i tēnei mate i te wā wawe.E rua ngā momo iti o tēnei momo.
- Te CAH e moumou tote ana: Koinei te momo CAH tino kino. I tēnei wā, he iti noa te nui o te homoni aldosterone e puta mai ana. Nā tēnei ka kore e taea e te tinana te whakahaere i ōna taumata tote (konutai). Nō reira, ka puta te tote nui ki roto i te mimi. I taua wā anō, ka heke hoki te homoni cortisol, ā, ka nui rawa te whakaputanga o te homoni androgen.
- CAH whakapūmau-ira (momo kore-tote, momo noa): He āhua iti ake te kino o tēnei mate. I konei, kāore te ngoikore o te homoni aldosterone i te tino kino. Nō reira, kāore e puta ngā tohu morearea ki te ora. Heoi, kei te iti tonu te homoni cortisol, ā, kei te teitei te homoni androgen. Ka puta he raruraru e pā ana ki te whanaketanga ā-ira.
2. CAH Kāore i te Matarohia: Koinei te momo CAH ngawari rawa atu. I te nuinga o te wā ka kitea i te mutunga o te tamarikitanga, te taiohitanga, te pakeketanga rānei. Tērā pea kāore he tohu o ētahi tāngata. I konei anō hoki, ka puta pea ētahi tohu e pā ana ki te whanaketanga ā-ira tangata nā te nui rawa o te whakaputanga o ngā homoni androgen.
He aha ngā tohu pea o te CAH?
Ka rerekē pea ngā tohumate CAH i runga i te momo me te ira tangata. Me titiro tātou ki te ripanga i raro nei kia mārama ai tātou ki tēnei.
| Momo CAH | Ngā tohu ka kitea |
|---|---|
| CAH Matarohia (momo kino - ngā kōtiro) |
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| CAH Matarohia (momo kino - tama) |
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| Ngā tohu tino morearea e pā ana ki te CAH e Ngaro Tote ana: | |
Tērā pea ka puta ēnei tohu i ngā wiki tuatahi i muri i te whānautanga o te pēpi. He āhuatanga ēnei e hiahia ana ki te maimoatanga hauora ohorere.
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| CAH kore-matarohia (momo ngawari) | Ka puta pea ēnei tohu i te tamarikitanga, i te taiohitanga, i muri mai rānei.
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He aha te take e puta ai te CAH? He aha te take?
He māmā noa iho, he mate ira te CAH. Ko te tikanga he mea tuku iho i ō tātou mātua. Ehara i te mate hopuhopu.
Mō ia āhuatanga o roto i tō tātou tinana, e rua ngā ira, tētahi nō tō tātou whaea, tētahi nō tō tātou pāpā. Kia puta ai te CAH, me riro i te tamaiti te ira hapa mai i tōna whaea me tōna pāpā . Ka kiia tēnei āhuatanga he mate autosomal recessive.
Ko te nuinga o te wā ka puta te CAH i te korenga o te whākōkī 21-hydroxylase. Ka puta mai i te whakarerekētanga ira i roto i te ira e waehere ana mō tēnei whākōkī.
Ko te mea nui, ahakoa he kawe i tēnei ira hapa ngā mātua e rua, kāore pea he tohu e pā ana ki a rāua. Tērā pea he hauora rāua. Engari he 25% te mōrearea o te tamaiti i whānau mai i a rāua ki te whakawhanake i te CAH.
Me pēhea te mōhio mēnā kei a koe te CAH?
CAH Matarohia (momo kino)
Koinei te rongo pai rawa atu. He maha ngā hōhipera i Sri Lanka e whakauru ana i te whakamātautau tirotiro CAH Classic ki roto i ngā whakamātautau e mahia ana i te whānautanga. Ka mahia tēnei i muri i ētahi rā i te whānautanga o te pēpi, mā te whakamahi i tētahi pata toto iti i tangohia mai i te rekereke o te pēpi . Ka taea e tēnei whakamātautau (tirotiro pēpi hou) te kite wawe mēnā he Classic CAH tō te pēpi. Ko te tikanga ka taea te tīmata i te maimoatanga i mua i te putanga mai o ngā tohu, ka whakaora i te ora o te pēpi.
Mena kei te hapu tetahi whānau he tamaiti kei a rātou, ā, kua pāngia kētia e te CAH, ka taea te whakamātautau i te pēpi mō te mate i te wā e hapu ana. He whakamātautau motuhake anō mō tēnei, pērā i te amniocentesis. Kōrero ki tō tākuta mō tēnei.
CAH kore-matarohia (momo ngawari)
Tērā pea ka roa te wā e kitea ai tēnei āhua ngawari nā te mea ka puta ake ngā tohu i muri mai. Ina tīmata koe, tāu tamaiti rānei ki te pāngia e ngā tohu kua whakahuatia ake nei, me toro atu koe ki te tākuta. Mā te tākuta ēnei mahi:
- Ka whakahaerehia he whakamātautau tinana.
- Ka tirohia ngā taumata o ngā homoni e ngā whakamātautau toto me te mimi.
- I ētahi wā, ka taea e ngā whakamātautau ira te whakaū i te mate.
He aha ngā maimoatanga mō tēnei?
Kāore e taea te whakaora katoa i te CAH. Heoi, mā te maimoatanga tika, ka taea te whakahaere pai, ā, ka taea e koe te noho ora noa, hauora hoki . Ko te maimoatanga e whakawhirinaki ana ki te momo mate me te kaha o ngā tohu.
Te Maimoatanga mō te CAH Matarohia
Me tango rongoā ēnei tāngata i ia rā mō te toenga o ō rātou oranga . Ko te whāinga matua o te maimoatanga he whakataurite i ngā taumata homoni mā te tuku homoni kāore i te pai i roto i te tinana. Mā tēnei ka āwhina i te tipu noa me te whanaketanga ā-ira tangata.
- Glucocorticoids: Ka whakakapia e ēnei rongoā te homoni cortisol kāore e hangaia e te tinana. Me whakanui ake pea te horopeta o ēnei rongoā ina pāngia te tamaiti e te mate pēnei i te kirika, te mate pāwera, i ngā wā taumaha rānei pēnei i te pokanga.
- Mineralocorticoids: Ka hoatu ēnei hei whakakapi i te homoni aldosterone kāore i hangaia i roto i te tinana.
- Ngā tāpiringa tote: Ka hoatu he konutai hauhāora ki ngā pēpi hou e pāngia ana e te mate tote hei whakakapi i te tote i ngaro i te tinana.
Kia maumahara, ka hoki mai pea ngā tohu ina mutu te tango i tēnei rongoā. Nō reira, kaua rawa e mutu te tango, kaua hoki e whakarerekē i te horopeta me te kore he tohutohu hauora.
Ko tētahi atu huarahi maimoatanga ko te pokanga hei whakatika i ngā ira tāne koretake o ngā kōtiro. Ka taea tēnei te mahi i waenga i te 2 me te 6 marama i muri i te whānautanga o te pēpi.
Te maimoatanga mō te CAH kore-matarohia
Kāore pea e hiahiatia he maimoatanga mō te hunga whai mate ngāwari pēnei mēnā kāore he tohumate. Mēnā he ngawari ngā tohumate, ka taea te hoatu he horopeta iti o te glucocorticoids ki a rātou. He maha ngā wā kāore e hiahiatia he maimoatanga mō te wā roa mō ēnei tāngata.
I roto i tētahi o ēnei āhuatanga, he mea tino nui te rapu tohutohu hauora hinengaro hei kōrero mō te ahotea me ngā raruraru e pāngia ana e te tamaiti me ngā mātua, hei wāhanga o te maimoatanga.
He aha ngā raruraru ka puta mai mēnā kāore e rongoatia?
Ki te kore e rongoatia, inā koa te momo CAH Classic e moumou tote ana, ka tino morearea. Mēnā ka nui rawa te tote me te wai e ngaro ana i te tinana, ka pā mai pea he raruraru ka mate pea. Mēnā kei te ruaki nui te tamaiti, kei te ngoikore, kāore rānei e ngote ana , me hari tonu ia ki te wāhanga maimoatanga ohorere (ETU) o te hōhipera.
Ngā mea ka pā mai mēnā kāore e rongoatia:
- Te pā o te manawa kāore i te tika (Arrhythmia)
- Te hopukanga o te ngākau
- Ka taea anō te mate.
Ahakoa kāore i te rongoatia, ka raru pea te CAH kore-matarohia. Hei tauira, te kore tamariki, ngā huringa paheketanga koretake, me ngā āhuatanga tāne tuturu i roto i ngā wāhine.
Karere Tangohia ki te Kāinga
- Ko te Congenital Adrenal Hyperplasia (CAH) he mate ira e pā ana ki te hanga o ngā homoni i roto i ngā repe adrenal.
- E rua ngā momo matua: ko te CAH matarohia me te CAH kore matarohia. Ka kitea te CAH matarohia i te whānautanga mai, ā, ka tūpono pea te ora.
- Mena kei te whakaatuhia e tō pēpi hou ngā tohu pēnei i te ruaki nui, te matewai, me te hiamoe rerekē, he tohu pea tēnei nō te CAH e moumou tote ana, ā, me tere tonu te aro hauora.
- Ahakoa e hiahiatia ana he rongoā i ia rā mō te CAH Matarohia mō tōna oranga katoa, ka taea tonu te ora i te oranga hauora me te āhua noa.
- He mea nui kia whai i ngā tohutohu a tō tākuta, kia haere hoki ki ngā wāhi rongoā i whakaritea. Kaua e mutu te rongoā me te kore e kōrero ki tō tākuta mō tētahi take.
- Mena he hītori whānau kei a koe te CAH, he tamaiti rānei kei a koe me te CAH, he mea nui te whai tohutohu ira hei whakamahere mō te heke mai.
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