Hei mātua, tera pea koe e manukanuka ana mō te hauora o tāu tamaiti. I ētahi wā he mea noa te mataku ina rongo koe i ngā mate onge kāore anō kia rangona. Āe, i tēnei rā ka kōrero tātou mō tētahi mate onge kāore anō kia rangona e te tini o te tangata, engari he mea nui kia mōhiotia. Ko tōna ingoa ko Homocystinuria.
He aha te Homocystinuria (HCY)?
Whakaarohia, e mōhio ana tātou kei roto i ngā kai e kainga ana e tātou, inā koa te mīti, te ika, te miraka, me ngā hua manu, he pūmua . He mea hanga tēnei pūmua nui i ngā wahi iti e kiia nei ko ngā waikawa amino . He rite ki ngā poraka hanga. I roto i te tinana o te tangata hauora, ka pakaruhia ēnei waikawa amino, ka nakunaku, ka riro hei pūngao e hiahiatia ana e tō tātou tinana.
Heoi, i roto i te tangata e pāngia ana e te Homocystinuria (HCY), kāore e taea e te tinana te wawahi me te nakunaku tika i te waikawa amino e kiia nei ko te methionine . Ka kiia tēnei he mate pākia. Ina tupu tēnei, ka tīmata te kohikohi o tēnei methionine me tētahi atu matū e kiia nei ko te homocysteine, e hangaia ana mai i a ia, ki roto i te tinana, inā koa ki roto i te toto. He mea morearea tēnei kohikohinga. Ki te kore e rongoatia, ka pā mai he raruraru hauora nui.
He aha tēnei e tupu nei? He aha te take o tēnei?
He whākōkī motuhake kei roto i tō tātou tinana e āwhina ana i te tukanga o te wawahi i tēnei waikawa amino e kiia nei ko te methionine. Whakaarohia tēnei whākōkī he kutikuti. Ka tapahia e ēnei kutikuti te mea nui e kiia nei ko te methionine kia iti noa iho.
Mō te tangata e pāngia ana e te homocystinuria, kāore tēnei whākōkī (kutikuti) e hangaia i roto i te tinana, ki te hangaia rānei, kāore e mahi tika.
Ko te mea nui, he mate tuku iho tēnei. Arā, ka tukuna iho i roto i ngā whakatipuranga. E rua ngā ira e tohutohu ana i a koe ki te hanga i tēnei whākōkī. Ko tētahi me tuku iho i tō whaea, ko tētahi me tuku iho i tō pāpā. Kia puta ai te homocystinuria, me whai hapa ngā ira e rua i tuku iho i tō whaea me tō pāpā.
He aha ngā tohu ka kitea e tātou?
He mea whakamiharo, ina tirohia he pēpi i whānau mai me te Homocystinuria, kāore he rerekētanga. He pēpi noa iho rātou. Ka tīmata ngā tohumate ki te puta i roto i ngā tau tuatahi o te oranga. Kāore e rite te pānga o ēnei tohumate ki ngā tamariki katoa. Tērā pea he maha ngā tohumate o ētahi tamariki, ko ētahi kāore pea e whakaatu.
Kia tupato ki ngā āhuatanga o te ripanga i raro nei.
| Kāwai āhuatanga | Ngā tohu e kitea whānuitia ana |
|---|---|
| Āhua o te tinana | He kiri mā me te makawe he āhua rerekē te āhua o te uma, he roa ake, he kikokore te tinana i ētahi atu tamariki, ā, he roa, he kikokore hoki ngā maihao. |
| Te tipu | Te pikinga puhoi o te taumaha me te tipu. |
| Te tirohanga | Te ngaronga nui o te tirohanga (te tirohanga tata), te nekenekehanga o te karu, tae atu ki te matapo. |
| Ētahi atu tohu kino | Te ngoikore o ngā wheua (te ngoikore), te toto totoka (e whakapiki ake ai i te mōrearea o te whiu me te mate ngakau), me ngā haurangi. |
| Te whanaketanga me te whanonga | Ngā whakaroa i te ngokingoki, te hikoi, me te kōrero. Ngā ngoikoretanga ako me ngā raruraru hinengaro. Ngā raruraru whanonga me te whakahaere kare ā-roto. |
Me pēhea te kitenga a ngā tākuta i tēnei?
I roto i te maha o ngā whenua, ka whakamahia he whakamātautau toto hei tirotiro i ngā mate pēnei i te Homocystinuria i te wā wawe. Mā tēnei whakamātautau toto ka kitea mēnā kei te tūpono te tamaiti ki te pangia e te mate.
Mena he rerekē ngā hua, ka tūtohu te tākuta i ētahi atu whakamātautau toto me te mimi motuhake hei whakaū i te mate. I Sri Lanka, ka whakaritea ēnei whakamātautau i muri i te putanga mai o ngā tohu, ā, i muri i te putanga mai o ngā whakapae.
Me pēhea te rongoā? He mea hei wehi māu?
Kāo, kaua e manukanuka. Ko te mea nui ko te tīmata i te maimoatanga i te wā tonu ka kitea te mate.Mā te tākuta mate pāwera koe e āwhina ki tēnei. Tērā pea ka rerekē te mahere maimoatanga i ia tamaiti, i ia tamaiti.
E rua ngā tikanga maimoatanga matua:
1. Maimoatanga Huaora B6
He momo homocystinuria iti ake te kino. Ka taea te whakahaere mā te hoatu i ngā horopeta nui o ngā tāpiringa huaora B6. Ka whakamātauhia e tō tākuta tō tamaiti kia mōhio ai mēnā he tika tēnei maimoatanga mā rātou. Ka taea e tēnei huaora te āwhina i te ārai i ngā raruraru whanonga me te hinengaro o ētahi tamariki, ā, ka taea hoki te āwhina i te whakaiti i te mōrearea o ngā raruraru kanohi, wheua, me te toto totoka.
2. Kai motuhake (Kai Iti-Methionine)
Ki te kore te tamaiti e aro ki te maimoatanga huaora B6, ko te mahi e whai ake nei ko te tīmata i tētahi kai iti te methionine . He maha ngā wā ka mau tonu tēnei kai mō te wā roa. He mea nui kia rapu āwhina i tētahi tohunga kai e tohunga ana ki ngā mate waikawa amino.
| Ngā mea hei whakaaroaro māu i te wā e whai ana i te kai iti-methionine | |
|---|---|
| Ngā kai nui te pūmua me karo rawa |
|
| Ētahi atu kai hei whakawhāiti, hei whakamutu rānei |
|
| Ngā mea ka taea e koe te kai me te tūpato | He iti noa te methionine kei roto i ngā hua me ngā huawhenua, nō reira ka taea te kai i roto i ngā rahinga iti , e ai ki ngā tohutohu a tō tākuta me tō tohunga kai. |
Hei tāpiritanga, ka tūtohu te tākuta kia hoatu he miraka motuhake ki te tamaiti hei utu mō te miraka. Kei roto i tēnei miraka ngā matūkai katoa e tika ana mō te tipu o te tamaiti, engari kua tangohia te methionine.
Waihoki, ka tohua pea e te tākuta ētahi atu tāpiringa.
- Betaine me te waikawa folic: Ka whakaitihia e ēnei ngā taumata o te homocysteine kino e kohia ana i roto i te toto.
- Huaora B12 me te L-cysteine: Ka kore pea ēnei e whai kiko nā te mate. Ka hoatu te B12 hei werohanga me te L-cysteine hei tāpiringa.
Kia tino whai hua ai te maimoatanga, me whakamātau tonu te toto me te mimi o tāu tamaiti. I te pakeketanga o tāu tamaiti, me hanga pea e koe ētahi huringa iti ki te mahere maimoatanga.
Nā, he aha tā tātou e whakaaro ai mō te heke mai?
Ko te rongo pai , ki te tīmata wawe te maimoatanga, ā, ki te haere tonu i te huarahi tika, ka taea e te tamaiti te tipu me te whanake i roto i te āhua noa . Ka taea hoki e te maimoatanga tika te whakaiti i te mōrearea o te whiu, te mate ngakau, me te toto totoka.
Ahakoa te maimoatanga, ka puta pea ngā raruraru tirohanga. Engari ka taea te whakahaere mā te pokanga, mā ētahi atu tikanga rānei. Ko te mea nui ko te pupuri tonu i te whakapā atu ki tō tākuta, me te whai i ana tohutohu.
Karere Tangohia ki te Kāinga
- He mate ira onge te homocystinuria e kore ai e taea e te tinana te nakunaku i te methionine, he waikawa amino e kitea ana i roto i ngā kai e kainga ana e tātou.
- He āhuatanga tēnei e puta mai ana i ngā ira ngoikore i tukuna iho mai i te whaea me te pāpā.
- Ka puta ngā tohu (te poto o te tinana, ngā raruraru tirohanga, te puhoi o te tipu) i muri tata i te whānautanga o te tamaiti.
- Ka taea te whakahaere angitu i tēnei āhuatanga mā te whakamahi i tētahi kai motuhake he iti te huaora B6, te methionine rānei.
- Mā te tātaritanga wawe me te maimoatanga mō te wā katoa ka āwhina i tāu tamaiti kia ora hauora, kia ora noa. Mena he āwangawanga āu mō tēnei, kōrero noa ki tō tākuta.
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