Kua kite koe i ngā ira whero, ira pōkākā, ira rerekē rānei te tae i runga i te kiri o tō pēpi i muri tonu i te whānautanga, i ētahi wiki rānei i muri mai? I ētahi wā, hei whaea, he mea whakamataku te kite i ēnei. I tēnei rā, ka kōrero tātou mō tētahi āhuatanga e puta ai ngā tohu rite, he mea onge, engari he mea nui kia mōhiotia. Ko te ingoa o tēnei ko te Incontinentia Pigmenti, ko te IP rānei te whakarapopototanga.
He aha te Incontinentia Pigmenti (IP)?
He māmā noa iho, he mate ira tēnei. Nā te mea he X-linked dominant, ka nui ake te pānga ki ngā kōtiro i ngā tama.
Kei roto te IP i tētahi rōpū mate e kiia nei ko ngā "mate kiriuhi". Whakaarohia, ko te tikanga ka pā tēnei mate ki tō tātou pūnaha io (arā, te roro me ngā io) me te kiri i te wā kotahi. Ehara i te mea koinā anake, engari i ētahi wā ka pā anō hoki ki ngā kanohi, ki ngā niho, me te pūnaha angaiwi.
Ka kitea nuitia tēnei mate i te whānautanga, i ngā wiki tuatahi rānei i muri i te whānautanga, me ngā ira me ngā pupuhi e puta ana i te kiri. Nā te whakarerekētanga o te ira e kiia nei ko NEMO (NF-kappaB essential modulator) tēnei i puta ai, e whakahaere ana i te mahi me te tipu o ō tātou pūtau. Tae noa ki tēnei wā, kāore anō kia kitea he rongoā katoa mō tēnei, engari he pai ngā maimoatanga hei whakahaere i ngā tohu.
He aha ngā panonitanga o te kiri? E whā ngā wāhanga!
E whā ngā wāhanga matua e kitea ai ngā panoni kiri o te IP. Engari kia maumahara, kāore ēnei wāhanga e hiahiatia kia puta i te raupapa. I ētahi wā ka taea te whakawhiti, ā, e rua, e toru rānei ngā wāhanga ka kitea i te wā kotahi.
| Atamira | Āhua me te Whakaahuatanga |
|---|---|
| Wāhanga 1: Ngā Pukupuku | Ko te āhua o tēnei ko te puta mai o ngā pupuhi whero kī tonu i te wai i runga i te tinana. Ko te nuinga o te wā ka kitea ēnei i ngā ringa me ngā waewae. |
| Wāhanga 2: Verrucal | Ka puta ake ngā whara hou, he rite ki te pōpokorua, ki te wāhi i mua i puta ai ngā mirumiru. |
| Wāhanga 3: Te whero o te kiri | Koinei te āhuatanga tino motuhake o tēnei mate. Ka puta te kiri he hina, he kikorangi, he parauri rānei, he rārangi māpere, he rārangi piupiu rānei. Ko te nuinga o ēnei ka puta ki te tinana me ngā peka. |
| Wāhanga 4: Te korenga o te kiri i roto i te kiri | Ka haere te wā, ka memeha haere aua ira pouri, ka waiho iho he koma, he rite ki te kōhatu, he koma ake i te tae o te kiri. |
He ira kiri anake? Kāo, tera pea ētahi atu pānga anō hoki
Kāore tēnei mate e pā ki te kiri anake. Tērā pea ka pāngia ētahi tamariki e ētahi atu raruraru. Heoi, me mārama koe kāore e puta katoa ēnei tohu i roto i ia tamaiti.
Ngā raruraru roro
Tata ki te 20% o ngā tamariki whai IP ka pāngia e ngā raruraru pūnaha io.
- Te whakaroa i te whanaketanga o te nekeneke: Hei tauira, kāore pea e taea e rātou te tahuri i ō rātou kaki, te hurihuri, te hikoi rānei i te tere rite tonu ki ētahi atu pēpi.
- Hauātanga hinengaro: Ngā mea pēnei i te hauātanga ako.
- Ngoikore o te uaua: Te ngoikore o te tinana.
- Ngā mate hopuhopu: Te putanga mai o ngā āhuatanga e rite ana ki te tauhohenga.
Ka puta pea tēnei i ngā āhuatanga pēnei i te mimiti o te kiko roro (te ngoikore o te roro) me te hanganga o ngā kōhao iti i roto i te mea mā o te roro.
Ngā pānga ki ngā kanohi me ngā niho
- Ngā raruraru kanohi: Ka pāngia pea ētahi tamariki e ngā āhuatanga pēnei i te strabismus, te cataract, te ngaronga nui rānei o te tirohanga.
- Ngā raruraru niho: Ka kitea ngā niho ngaro me ngā niho āhua titi.
Ko te mea nui kia kaua e mataku ina kite koe i tētahi tohu pēnei, engari me toro atu ki tētahi tākuta tamariki mō ētahi tohutohu.
Me pēhea te rongoā mō tēnei?
Ka rongoatia te IP i runga i ngā tohumate o te tamaiti. Tērā pea ka rerekē ngā kōwhiringa maimoatanga e tika ana mō ia tangata.
| Raru (Tohumate) | Huarahi Maimoatanga |
|---|---|
| Ngā ira kiri me ngā pupuhi | Ko te rongo pai, kāore ēnei ira kiri e hiahiatia he maimoatanga motuhake. Ka memeha haere i te nuinga o te wā i te pakeketanga o te tamaiti, i te pakeketanga rānei. |
| Ngā raruraru o te pūnaha io (ngoikore o te uaua, te ngoikore o te uaua) | Mō ngā āhuatanga pēnei, me toro atu koe ki tētahi tākuta roro . Kātahi ka taea te whakahaere i ēnei āhuatanga mā te rongoā, mā ētahi atu taputapu hauora rānei, ki te tika. |
| Te ngoikore o te tirohanga | Mō ngā raruraru tirohanga, ka taea e koe te toro atu ki tētahi tākuta kanohi, me te tiki mōhiti, rongoā, ā, i ngā wā tino kino, ka taea te pokanga. |
| Ngā raruraru niho | Mena he raruraru kei te āhua, kei te maha rānei o ngā niho, ka taea e koe te rapu i te maimoatanga e tika ana mai i te tākuta niho. |
Nō reira, me wehi tātou i te heke mai?
He pātai tēnei nā te tini o ngā mātua. Inaa, i te nuinga o te wā, ki te kore he raruraru nui i te wā e pēpi ana, ka taea e ngā tamariki whai IP te ora i te roanga o te oranga noa , me te ora hauora, i te oranga noa . I roto i te wā, ka memeha haere aua ira pango o te kiri, ā, ka ngaro katoa atu rānei.
Heoi, e ai ki te kōrero i mua ake nei, kei reira ētahi tamariki he mate pūnaha io, he mate tinana rānei. Nō reira, ko te mea pai ko te kōrero ki tō tākuta mō te āhua o tāu tamaiti. Kātahi ka mārama koe ki te mahere hauora pai rawa atu mō tāu tamaiti, me te aha hoki hei mahi i muri mai.
Karere Tangohia ki te Kāinga
- Ko te Incontinentia Pigmenti (IP) he mate ira onge e pā nui ana ki ngā kōtiro.
- Ko te tohu matua he raupapa o ngā panoni kiri (ngā mirumiru, ngā wāhi taratara, ngā wāhi mangu me ngā wāhi mā).
- Haunga ngā raruraru kiri, ka pāngia pea ētahi tamariki e ngā raruraru e pā ana ki te pūnaha io, ngā kanohi, me ngā niho.
- Ka memeha haere ngā ira kiri i roto i te wā, me te kore he maimoatanga.
- Ka taea e te nuinga o ngā tamariki te noho ora noa, hauora, me te kore he raruraru nui.
- Mena kei tō tamaiti ēnei tohu, he mea nui kia kaua e mataku, me toro atu ki tētahi tākuta tamariki mō ngā tohutohu tika.
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