He mea tino harikoa te kite i tētahi pēpi hou e raru ana, e tīmata ana ki te hikoi. Engari i ētahi wā, ka kite tātou i te ngoikore o te uaua me te nekehanga o ētahi tamariki. Ko tētahi take pea ko te āhua e kōrerohia nei e tātou i tēnei rā, ko te Spinal Muscular Atrophy , arā, ko te SMA. Ahakoa he kaupapa nui tēnei, he mea tino nui kia mōhio pai tātou ki tēnei kaupapa.
He aha te ngoikore o te uaua o te tuaiwi (SMA)?
Ko te Spinal Muscular Atrophy (SMA) he mate ira. Ko ngā uaua o roto i tō tātou tinana e whakahaeretia ana e tētahi momo pūtau io. Ka karangatia ēnei he neuron motuka . Whakaarohia me te mea ko tō roro te pūtake hiko matua. Mai i reira, ko ēnei neuron motuka ko ngā 'waea' e kawe ana i ngā tohu hiko ki ngā uaua o ō ringaringa me ō waewae. I roto i te SMA, ka pakaru ēnei neuron motuka i roto i te taurakira, ā, ka ngoikore haere. Ina ngoikore ēnei 'waea', kāore ngā tohu mai i te roro e tae tika ki ngā uaua. Nō reira, ka tīmata te kōpiri me te ngoikore o ngā uaua.
Ka pāngia ngā tamariki me ngā pakeke. Kia pāngia ai te tamaiti e te mate, me tuku iho te ira e puta ai te mate i ngā mātua e rua . Tata ki te kotahi i roto i te 50 o ngā pakeke o te hapori he kaikawe pea i tēnei ira. Ko te tikanga tēnei ahakoa kei roto i te tinana te ira mate, kāore e whakaatu i ngā tohu. Heoi, tera pea ka riro i te tamaiti tēnei mate mai i ngā mātua e rua he kaikawe. I te toharite, tata ki te kotahi i roto i te 10,000 ngā tamariki i whānau mai ka pāngia e tēnei mate.
He mea nui, he rerekē te kaha o te SMA i runga i te tau ka tīmata te puta o ngā tohu . I te nuinga o te wā, ki te tīmata ngā tohu i te wā pēpi, ka kaha ake te kino o te mate.
Ngā momo matua o te mate SMA me ō rātou āhuatanga
Ka wehea e ngā tākuta tēnei mate ki ētahi momo matua i runga i te wā i tīmata ai me te kaha o ngā tohu. Me titiro tātou ki ia momo me ētahi atu taipitopito.
| Momo SMA | Te wā e tīmata ai ngā tohu | Ngā āhuatanga matua me ngā taipitopito |
|---|---|---|
| Momo 0 | Mai i mua i te whānautanga |
|
| Momo 1 (Te mate Werdnig-Hoffmann) | Tata ki te 3 marama | |
| Momo 2 | I waenganui i te 7 me te 18 marama | |
| Momo 3 (Te mate Kugelberg-Welander) | I te mutunga o te tamarikitanga, i te taitamarikitanga rānei | |
| Momo 4 | I te pakeketanga (i muri i te 30 tau te pakeke) |
He aha koe me manukanuka ai mō ēnei tohu?
E kite ana koe, ko te nuinga o te wā ka pā te SMA ki ngā uaua e āwhina ana i te tinana ki te neke. Engari kāore e mutu i reira.
- Te Manawa: Mā ngā uaua o roto i tō tātou uma tātou e āwhina ki te manawa ki roto, ki waho hoki. Ina ngoikore ēnei uaua, kāore e taea e tātou te manawa tika. Ka arahi pea tēnei ki ngā mate manawa maha pērā i te niumōnia.
- Kai: Mā ngā uaua o te korokoro me te waha tātou e āwhina ki te horomi me te ngote kai. Ina ngoikore, kāore e taea e te tamaiti te ngote, te horomi rānei i te kai tika. Ka arahi pea tēnei ki te kore kai pai.
- Āhua o te tinana: Ina ngoikore ngā uaua e āwhina ana ki te pupuri i te tuaiwi kia tika, ka tīmata te piko o te tuaiwi (scoliosis). Ka uaua ake te manawa.
He maimoatanga kei reira?
Kāore anō kia kitea he rongoā mō te SMA. Heoi, i ngā tau tata nei, kua whakauruhia mai e ngā whanaketanga o te pūtaiao hauora ētahi maimoatanga hou hei whakahaere i te haere whakamua o te mate me te whakahaere i ngā tohu.
Hei tauira, e rua ngā maimoatanga kua whakaaetia e te US FDA ko:
- Nusinersen (Spinraza)
- Onasemnogene abeparvovec-xioi (Zolgensma)
He tino uaua, he utu nui hoki ēnei maimoatanga, ā, e mahi ana i te taumata ira. He mea nui kia kōrero koe ki tō tākuta mō te wātea me te wātea o ēnei maimoatanga i Sri Lanka.
He mea nui: Ko te tohunga anake e tirotiro ana i a koe, i tāu tamaiti rānei, me whakatau ko tēhea maimoatanga te mea pai mōu, mō tāu tamaiti rānei. Kaua rawa e whakatau i runga i ngā mōhiohio e kitea ana i te Ipurangi.
Hei tāpiritanga, ko te whakaora tinana, ko ngā mahi manawa, ko ngā tohutohu kai, me te pokanga (hei tauira, te whakakotahitanga tuaiwi) ka āwhina i te whakapai ake i te kounga o te oranga o te tūroro me te ārai i ngā raruraru.
Karere Tangohia ki te Kāinga
- Ko te Spinal Muscular Atrophy (SMA) he mate ira e pā ana ki ngā pūtau io e whakahaere ana i ō tātou uaua.
- E wehea ana tēnei mate ki ētahi momo, i runga i te tau ka tīmata ai ngā tohu. Mēnā ka tīmata ngā tohu i te wā taitamariki, ka nui ake te kino o te mate.
- Mena he "pūpū" te tinana o tāu tamaiti, ā, he uaua ki te hiki i tōna mahunga, te hurihuri, te noho rānei, me toro atu tonu ki tētahi tākuta tamariki whai tohu.
- Ahakoa kāore e taea te whakaora katoa i te SMA, ka taea e ngā maimoatanga me ngā tikanga hou pēnei i te whakaora tinana te āwhina i te whakahaere i te mate me te whakapai ake i te kounga o te oranga.
- Me whakatau noa i te maimoatanga i muri i te kōrero ki tō tākuta.
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