I ētahi wā kua kite tātou i ngā tāngata he poto rawa atu i te toharite, arā, he poto, tika? I roto pea i ngā kiriata, i te ao tūturu rānei. Ko tētahi take mō tēnei he mate e kiia nei ko te Chondrodysplasia. Kaua e mataku ina rongo koe i tēnei ingoa. He ingoa whānui tēnei mō ētahi mate e pā ana ki te whanaketanga o te wheua e puta mai ana i ngā huringa o ngā ira o tō tātou tinana. Ko te tikanga ka tātaritatia tēnei mate e ngā tākuta i te whānautanga mai o te pēpi.
Whakaarohia, ehara tēnei i te momo mate kotahi anake. I tētahi taha, ka taea e ētahi tāngata whai mate pēnei te noho noa i te ao whānui, kāore he herenga nui. Hei tauira, ko te hunga kua mātaki i te 'Game of Thrones' ka mōhio ki te kiripuaki o Tyrion Lannister. Ko te kaiwhakaari e takaro ana i taua kiripuaki, a Peter Dinklage, he mate tōna e kiia nei ko Achondroplasia, nō te momo Chondrodysplasia. He oranga angitu, he oranga kī tonu tōna. Engari, i tētahi atu taha, he momo tino kino, he mamae hoki o tēnei mate. Hei tauira ko te Rhizomelic Chondrodysplasia Punctata (RCDP1). Ka whakaroa tēnei mate i te tipu o ngā pēpi, ngā raruraru wheua, ngā mate hinengaro , me ngā katarata . He maha ngā tamariki whai mate kino nei kāore e ora i tua atu i te tamarikitanga. Engari kei reira te tumanako. Kei te ngana ngā kairangahau ki te kimi rongoā mō te RCDP1.
He aha ngā take mō tēnei?
He māmā noa iho, he āhuatanga ira ēnei. Ko te tikanga, nā ētahi huringa, hapa rānei o ngā ira kei roto i ngā pūtau o tō tātou tinana i puta ai. I ētahi wā, ka taea te tuku iho i ēnei hapa ira mai i ngā mātua ki ngā tamariki. Ko tētahi o aua āhuatanga ira ko te mate kino e kiia nei ko te RCDP1.
Heoi, ko te momo tino noa, pērā i te Achondroplasia, ka puta pinepine mai i tētahi whakarerekētanga ira tūpono. Ko te tikanga ka taea e te tamaiti te pāngia ahakoa kāore tetahi o ngā mātua e pāngia ana e te mate.
He aha ngā tohu o tēnei mate?
Haunga te āhua o te tangata, ko ngā tohumate e whakawhirinaki ana ki te momo Chondrodysplasia kei a rātou. Ko ngā tohumate matua ko te poto o te tinana (te poto o te tinana) me te rahi o te upoko i te rahi noa . Engari tera atu anō ētahi tohumate ka puta. Me titiro tātou he aha ēnei tohumate.
| Te wāhanga tinana ka puta ai te tohu | Raru pea |
|---|---|
| Te whanaketanga o te roro | I ētahi momo, ka pāngia te whanaketanga o te roro, ā, ka puta pea te ngoikore o te hinengaro. Heoi, i roto i ngā momo pēnei i te Achondroplasia, kāore e kitea te ngoikore o te hinengaro. |
| Kiri | Ka taratara, ka pakipaki te kiri. |
| Waha | Te waha whati. |
| Ngā kanohi | Te ngoikore o te tirohanga nā te katarata. |
| Tuaiwi | Te puta mai o ngā hapa o te tuaiwi. |
Me pēhea te tautuhi i te mate?
He maha ngā wā, ka whakapae pea te tākuta kei te pāngia te pēpi i tēnei mate i te whānautanga tonu, nā te mea ka ngāwari te tautuhi i ngā tohu pēnei i te poto o ngā waewae me te rahi o te māhunga .
Hei whakaū i tēnei whakapae, ka tonoa e te tākuta he hihi-X . E whakaatu ana te hihi-X he poto rawa, he whānui rawa hoki ngā wheua o ngā ringa me ngā waewae o te tamaiti.
Hei tāpiritanga, ka taea te kite i ngā āhuatanga pēnei i te Achondroplasia ahakoa he matawai ultrasound i te wā e noho tonu ana te pēpi i roto i te kōpū. Mena kei te hiahia koe kia tino mōhio ki te tautuhi mate, kei reira anō ngā whakamātautau ira motuhake mō tēnā.
He aha ngā maimoatanga?
Ko ngā whiringa maimoatanga ka whakawhiwhia ki tāu tamaiti ka whakawhirinaki ki te momo Chondrodysplasia e pāngia ana e ia. Ko te mea nui kia mārama ki konei, ko te nuinga o ngā maimoatanga kāore e taea te whakanui ake i te teitei o te tamaiti , engari ka taea e rātou te āwhina ki te whakaiti me te whakahaere i ētahi atu raruraru hauora e pā ana ki taua mate.
- Mō tētahi āhuatanga kāore i te tino kino pērā i te achondroplasia: Mena kei te hauora tō tamaiti, ko tāu noa iho he toro atu ki tō tākuta tamariki i ia wā, i ia wā, kia tirohia ai te oranga o tō tamaiti. Mena ka puta he raruraru, me whakarato e koe te maimoatanga e tika ana.
- I ngā wā tino kino, ka uru pea tētahi tīma tohunga ki te rongoā i te tamaiti. He maha ngā tāngata, pērā i ngā kaiwhakaora tinana me ngā tohunga kai, me uru atu. He maha ngā wā ka mahia tēnei maimoatanga i roto i te hōhipera.
He kōrero anō mō te maimoatanga
I ētahi wā onge, kua āwhina te hoatutanga o ngā homoni tipu ki te tipu o te wheua, engari ehara i te mea he rongoā tuturu. Kāore ngā homoni tipu e whakaora i ngā mate pēnei i te achondroplasia.
Ka whakamahia e ētahi te pokanga whakaroa i ngā peka . Engari he tikanga tautohenga tēnei. Nā te mea he mōrearea, ā, he tino mamae hoki. I te nuinga o te wā, ka piki ake te teitei o tēnei pokanga mā te torutoru inihi noa iho. Nā te mea he tino uaua ki te tinana me te hinengaro tēnei raupapa pokanga, ka tūtohu ngā tākuta kia whakaroahia tēnei pokanga kia tae rā anō ki te pakeke o te tamaiti ki te mārama me te whakatau i ā rātou ake whakatau.
He aha ngā raruraru ka pā mai?
Ko te nuinga o ngā momo chondrodysplasia ehara i te mea mōrearea ki te ora, engari ka taea e rātou te whakararu i te mamae me te roa o ngā raruraru. Ka taea e tō tākuta te āwhina i a koe ki te whakahaere i ēnei.
| Ngā raruraru | He whakamārama māmā |
|---|---|
| Te uaua ki te manawa | Ka uaua pea te manawa i te iti o te kōhao o te uma. |
| Te mamae o te tuara me te totoro o te tuaiwi | Ka taea e ngā huringa o te tuaiwi te whakararu i te mamae me te pakari. |
| Te whakatōtōtanga o te tuaiwi | Te pēhanga o ngā io nā te whaiti o te awa e haere ai te taurakira ki roto i te tuaiwi. |
| Ngā take tahi | Te mamae o ngā hononga me te uaua ki te neke. |
| Ngā mate pūkahukahu auau | Ka taea e ngā huringa o ngā tauira manawa te whakaputa i ngā mate pūkahukahu auau. |
| Ngā mate hopuhopu | I ētahi momo tino kino, ka pā mai ngā haurangi nā te mea ka pā ki te whanaketanga o te roro. |
| Te moe pōrearea | Te mutunga o te manawa mō tētahi wā poto i te wā e moe ana. |
Me pēhea koe e whiwhi tautoko ai māu ake me tāu tamaiti?
I te noho tahi me tēnei mate, he mea tino nui te tautoko i a koe me tāu tamaiti. Kāore te hunga whai mate nei e pai kia whakaarohia he motuhake rātou. Engari i ētahi wā ka ngana te hunga o te hapori ki te whakahāwea i a rātou, ki te hē hoki te mārama ki a rātou. Ina koa i te kura, he nui te tūponotanga ka tukinotia rātou e ō rātou hoa.
Nō reira, he mea tino pai te rapu tohutohu hei āwhina i te tamaiti ki te whakatau i tēnei āhuatanga, hei āwhina hoki i ētahi atu kia mārama ki tēnei. Waihoki, kei reira ngā rōpū tautoko kua whakatūria e ngā whānau he tamariki pēnei. Mā roto i ēnei rōpū, ka taea e koutou te whakawhitiwhiti kōrero, te kōrero mō ngā wheako, me te noho hei puna whakakaha tetahi ki tetahi.
Karere Tangohia ki te Kāinga
- Ehara te chondrodysplasia i te mate kotahi. He kupu whānui tēnei mō ētahi āhuatanga ira e pā ana ki te whanaketanga o te wheua.
- He rerekē te kaha o tēnei mate i ia tangata, i ia tangata. Ahakoa he ngawari noa iho ngā pānga o ētahi tāngata, he nui pea ngā raruraru o ētahi atu. He maha ngā tāngata e pāngia ana e ngā mate pēnei i te achondroplasia e ora tonu ana, e angitu ana.
- Ko te whāinga matua o te maimoatanga ehara i te whakanui ake i te teitei, engari ko te whakahaere i ngā raruraru hauora e pā ana (pēnei i te mamae o te tuara, ngā uauatanga o te manawa).
- Kia mōhio koe kei te pāngia tāu tamaiti e tēnei mate, he mea tino nui kia rapu awhina koe i tētahi tīma tākuta motuhake.
- Haunga te maimoatanga hauora, he mea tino nui anō hoki te tautoko hinengaro me te tohutohu mō te tamaiti me te whānau. He mea nui kia whakapakari i te tamaiti kia tū atu ki ngā mahi whakatoi pāpori.
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