He aha te Retinoblastoma? Tohutohu, Take, me te Maimoatanga

He aha te retinoblastoma?

Ko te retinoblastoma he mate pukupuku kanohi onge e tupu ana i te retina, te kiko whakamaarama marama kei muri i to kanohi. Ko tenei mate pukupuku te nuinga o nga tamariki iti e pa ana, me te nuinga o nga keehi e kitea ana i mua i te 5 o nga tau.

Whakaarohia te retina hei kiriata kamera o to kanohi. Ka tipu kino nga pūtau i roto i tenei wāhi, ka taea e rātou te hanga i ngā pūngāwerewere e āwangawanga ana i te kite. Ko te rongo pai ko te retinoblastoma he tino taea te whakaora ina kitea wawe, a he maha nga tamariki e ora tonu ana i te oranga noa.

Ka taea e tenei mate pukupuku te pā i tetahi kanohi, i ngā kanohi e rua. Ki te puta i ngā kanohi e rua, he mea noa i te whānau na ngā take ira. Ko ngā keehi kotahi kanohi te nuinga ka tupu muri mai, ā, kāore i te whakawhiwhia.

He aha ngā tohu o te retinoblastoma?

Ko te tohu tino kitea e ngā mātua ko te mārama ma, te whakaata rānei i roto i te kanohi o tō rātou tamaiti, inā koa i ngā whakaahua i tangohia me te rama. Ko te ahua o te pupi ma, e kiia nei ko te leukocoria, ka puta mai i te whakaata whero noa.

Ko ēnei ngā tohu matua hei titiro atu:

• Mārama ma i roto i te pupi, inā koa te kitea i ngā whakaahua rama
• Ngā kanohi kāore e neke tahi, te haere rānei (strabismus)
• Whero, pupū rānei te taiao o te kanohi
• Pātai kite, te kōrero rānei mō te kore e kite mārama
• Ngaro kanohi, ahakoa he iti te kite i ngā wā tīmata

Ka rongo pea etahi tamariki i ētahi huringa ngāwari ake penei i te nui haere o te roimata, te ngawari rānei ki te mārama. I etahi wā onge, ka taea e te pūngāwerewere te tipu nui rawa kia puta mai te kanohi nui atu i te noa.

Kia mahara ko te nuinga o ēnei tohu ka taea te whai take iti ake, he iti ake te kino. Heoi, ko ētahi huringa mau tonu i ngā kanohi o tō tamaiti e tika ana kia tirotirohia e tō tākuta tamariki, tētahi tohunga kanohi rānei.

He aha ngā take o te retinoblastoma?

Ka puta te retinoblastoma ina whanake ngā pūtau i te retina i ngā huringa ira e āwangawanga ana i te tipu. Ka puta ēnei huringa i roto i te ira e kiia nei ko te RB1, e āwhina ana i te whakahaere i te tipu o ngā pūtau.

Ko te 40% o ngā keehi he mea whakawhiwhia, arā, ka tukuna te huringa ira i ngā mātua. Ko ngā tamariki he retinoblastoma whakawhiwhia te nuinga ka whanake i ngā pūngāwerewere i ngā kanohi e rua, ā, kei te tūpono ki ētahi atu mate pukupuku i muri mai o te ora.

Ko te toenga 60% o ngā keehi he mea tūturu, arā, ka puta te huringa ira i te wa o te whanaketanga. Ko ēnei tamariki te nuinga he pūngāwerewere i tetahi kanohi anake, kāore hoki e tukuna te āhuatanga ki ō rātou tamariki.

He mea nui kia mārama kāore ngā mātua i puta tenei mate pukupuku mā tetahi mea i mahi rānei, kāore rānei i mahi. Ka puta ngā huringa ira e ārahi ana ki te retinoblastoma i te āhua noa, kāore hoki e taea te aukati.

Nōhea koe me haere ki te tākuta mō ngā āwangawanga retinoblastoma?

Me whakapiri atu koe ki te tākuta o tō tamaiti tonu ki te kite koe i te mārama ma, te whakaata rānei i roto i te kanohi o tō tamaiti, inā koa ki te puta tonu i ngā whakaahua. Ko tēnei tohu e hiahia ana ki te tirotiro wawe.

Whakaritea he whakatau i roto i ngā rā torutoru ki te whanake tō tamaiti i ngā kanohi kōwhiti, ngā raruraru kite, te whero kanohi mau tonu rānei kāore e pai ake. Ahakoa he maha ngā take ngāwari o ēnei tohu, ko te tirotiro wawe e whakarite ana kāore he mea nui e ngaro.

Kaua e tatari kia pai ake ngā tohu. Ka tipu tere te retinoblastoma, ā, ko te kite wawe e tino whakapai ake ana i ngā hua whakaora, ā, e tiaki ana i te kite.

Ki te whai koe i te hītori whānau o te retinoblastoma, kōrerohia te tohutohu ira me ngā tirotiro kanohi auau ki tō tākuta tamariki, ahakoa kāore he tohu tō tamaiti.

He aha ngā take tūpono mō te retinoblastoma?

Ko te take tūpono kaha ko te whai mātua, te teina rānei he retinoblastoma. Ko ngā tamariki he mema whānau pāngia te nui atu te tūpono ki te whanake i tēnei mate pukupuku.

Ko ēnei ngā take tūpono matua:

• Hītori whānau o te retinoblastoma
• Te whai i te ahua whakawhiwhia o te huringa ira RB1
• Te pakeke iti, inā koa i raro i te 2 tau
• Te maimoatanga o mua mō te retinoblastoma whakawhiwhia (e whakapiki ake ana i te tūpono o ētahi atu mate pukupuku)

Ko te nuinga o ngā tamariki e whanake ana i te retinoblastoma kāore he hītori whānau o te āhuatanga. Ko te pakeke te take tino nui, i te mea ko tēnei mate pukupuku te nuinga o ngā tamariki iti rawa e pā ana.

Kāore i rite ki te maha o ngā mate pukupuku pakeke, kāore ngā take oranga e pā ana ki te tūpono retinoblastoma. Kāore he mea ka taea e ngā mātua te aukati, te whakaeke rānei i tēnei āhuatanga.

He aha ngā raruraru pea o te retinoblastoma?

Ina kitea, ā, whakaorangia wawe, ko te nuinga o ngā tamariki he retinoblastoma kāore e pāngia e ngā raruraru nui. Heoi, ka taea e te maimoatanga whakaroa te ārahi ki te ngaro o te kite, ki ētahi atu raruraru nui ake.

Ko ngā raruraru pea e whai ake nei:

• Te ngaro o te kite wāhanga, te katoa rānei i te kanohi pāngia
• Glaucoma (te pēhanga nui i roto i te kanohi)
• Te hora o te mate pukupuku ki ētahi atu wāhi o te tinana
• Te hiahia ki te tango kanohi hei aukati i te hora o te mate pukupuku
• Te whanake o ētahi atu mate pukupuku i muri mai o te ora (ngā keehi whakawhiwhia)

Ko ngā tamariki he retinoblastoma whakawhiwhia te nui atu te tūpono ki te whanake i ētahi atu mate pukupuku, inā koa ngā mate pukupuku wheua me ngā sarcoma kiko ngawari, i a rātou e tipu haere ana. Koinei te take e noho tonu ana te tiaki whai muri he mea nui.

Ka taea hoki te nui o te pānga o te ngākau ki ngā whānau. He maha ngā tamariki me ngā mātua e whai hua ana i te tohutohu me ngā rōpū tautoko hei awhina i te whakahaere i te whakatau, te maimoatanga.

Me pēhea te whakatau i te retinoblastoma?

Ko te whakatau te nuinga ka tīmata me te tirotiro kanohi tino pai e te ophthalmologist e tohunga ana i ngā keehi tamariki. Ka whakawhānui te tākuta i ngā pupi o tō tamaiti kia whiwhi i te tirohanga mārama o te retina.

I te wā o te tirotiro, pea ka hiahia tō tamaiti kia whakangā, kia hoatu rānei te whakaora whānui kia noho ata noho. Ka taea e tēnei te tākuta te tirotiro tino pai i ngā kanohi e rua, te tango rānei i ngā whakaahua taipitopito o ētahi wāhi kino.

Ko ētahi atu whakamātautau pea ka whai ake nei: te ultrasound o te kanohi, ngā tātaritanga MRI hei tirotiro mena kua hora te mate pukupuku, me te whakamātautau ira hei whakatau mena he mea whakawhiwhia te keehi. Ka taea e ngā whakamātautau toto te tohu i ngā tamariki e mau ana i te huringa ira.

Ko te tukanga whakatau katoa te nuinga ka roa i ngā rā maha kia oti. Ka whakamārama tō rōpū hauora i ia kaupae, ā, ka āwhina i a koe ki te mārama he aha ngā hua mō te mahere maimoatanga o tō tamaiti.

He aha te maimoatanga mō te retinoblastoma?

Ko te maimoatanga e whakawhirinaki ana ki te rahi o te pūngāwerewere, te wāhi, me te pānga rānei ki tetahi kanohi, ki ngā kanohi e rua rānei. Ko ngā whāinga matua ko te whakaora i te ora o tō tamaiti, te tiaki i te kanohi ina taea, me te pupuri i te kite nui rawa.

Ko ngā kōwhiringa maimoatanga noa e whai ake nei:

• Te chemotherapy hei whakaiti i ngā pūngāwerewere i mua i ētahi atu maimoatanga
• Te rongoā laser, te cryotherapy rānei hei whakangaro i ngā pūngāwerewere iti
• Te rongoā radiation mō ngā pūngāwerewere nui
• Te tango pokanga o te kanohi (enucleation) i ngā keehi kino
• Ngā whakaurunga kanohi o ngā rongoā chemotherapy

He maha ngā tamariki e whiwhi ana i ngā maimoatanga whakakotahi e rite ana ki ō rātou āhuatanga motuhake. Hei tauira, pea ka whakaiti te chemotherapy i te pūngāwerewere nui kia taea ai e te rongoā laser te whakangaro katoa.

Ko te maimoatanga te nuinga ka roa i ngā marama maha, ā, e hiahia ana ki ngā haerenga whai muri auau. Ka tirotiro tata te rōpū hauora o tō tamaiti i te ahunga whakamua, ka whakarereke i te mahere maimoatanga kia rite ki te hiahia.

Me pēhea te whakarato i te tiaki kāinga i te wā o te maimoatanga retinoblastoma?

Ko tō mahi matua i te kāinga ko te pupuri i tō tamaiti kia ngāwari, te pupuri rānei i ngā mahi noa i te wa e taea ana. Ka taea e te maimoatanga te whakama, no reira ko te okioki atu me ngā mahi ngāwari te mahi pai.

Tirohia ngā tohu o te mate penei i te kirika, te whero nui ake, te tukunga rānei i te kanohi i maimoatia. Whakapiri atu ki tō rōpū hauora tonu ki te kite koe i ēnei tohu, ki te ahua rānei o tō tamaiti he kino rawa.

Tīakina tō tamaiti i ngā hinga me ngā whara kanohi i te wā o te maimoatanga. Kaua e takaro kino, ā, whakaarohia te whakamahi i ngā karapu tiaki i ngā mahi. Pupuri i te kanohi i maimoatia kia ma kia rite ki ngā tohutohu a tō tākuta.

Pupuri i ngā kaupapa whāngai auau, ā, tuku i ngā kai tino pai ina pai tō tamaiti ki te kai. Ka taea e ētahi maimoatanga te pā ki te hiahia kai, no reira arotahi ki ngā kōwhiringa kai hauora ina hiakai rātou.

Me pēhea te whakarite mō ō whakatau tākuta?

Tuhia ō pātai katoa i mua i ia haerenga, tae atu ki ngā āwangawanga mō ngā pānga taha o te maimoatanga, te tirohanga roa, me ngā tohutohu tiaki o ia rā. Kaua e manukanuka ki te maha o ngā pātai.

Mau mai he rārangi o ngā rongoā katoa e inu ana tō tamaiti, tae atu ki ngā taonga-ā-te-kāinga me ngā tāpiri. Mau mai hoki ētahi whakaahua hou e whakaatu ana i te whakaata pupi ma ki te mea koinei te mea i ārahi ai i tō haerenga.

Whakaarohia te kawe mai i tētahi atu pakeke ki ngā whakatau, inā koa i te kōrero mō ngā kōwhiringa maimoatanga. Ko te tautoko e āwhina ana i a koe ki te mahara ki ngā mōhiohio nui, ā, e whakarato ana i te ngāwari o te ngākau i ngā kōrero uaua.

Whakaritea tō tamaiti kia rite ki te tau mō ngā haerenga hauora. Ko ngā whakamārama ngāwari mō te "ngā tākuta e āwhina ana i ō kanohi kia pai ake" te mahi pai mō ngā tamariki iti.

He aha te mea nui mō te retinoblastoma?

Ko te retinoblastoma he mate pukupuku tamariki nui, engari he tino taea te whakaora ina kitea wawe. Ko te mārama ma onge i roto i te kanohi o tō tamaiti, inā koa te kitea i ngā whakaahua rama, ko te tohu whakatūpato nui hei titiro atu.

Ko ngā reiti angitu maimoatanga he tino pai, me te neke atu i te 95% o ngā tamariki e ora ana ina kore te mate pukupuku kua hora atu i te kanohi. He maha ngā tamariki e pupuri ana i te kite pai i tetahi kanohi iti rawa, ā, e ora tonu ana i te oranga noa.

Whakaarohia ō tūmanako hei mātua. Ki te mea he rerekē te ahua o ngā kanohi o tō tamaiti, te āwangawanga rānei, kaua e whakaroa ki te rapu whakamātautau hauora. Ko te kite wawe te mea nui i ngā hua maimoatanga.

Kia mahara kāore koe i te kotahi i roto i tēnei haerenga. Kei reira tō rōpū hauora, whānau, me ngā whakahaere tautoko hei āwhina i a koe ki te whakahaere i te maimoatanga me te ora.

Ngā pātai uiui noa mō te retinoblastoma

Ka taea te aukati i te retinoblastoma?

Kāore, kāore e taea te aukati i te retinoblastoma, nā te mea ka puta mai i ngā huringa ira e puta mai ana i te āhua noa. Heoi, ki te whai koe i te hītori whānau o te retinoblastoma, ka taea e te tohutohu ira te āwhina i a koe ki te mārama ki ngā tūpono, ki te whakarite rānei i ngā tirotiro tika mō ō tamariki. Ka taea e ngā tirotiro kanohi auau te āwhina ki te kite wawe i te mate pukupuku ina tino whai hua te maimoatanga.

Ka taea e taku tamaiti te kite noa i muri i te maimoatanga?

Ko ngā hua kite e whakawhirinaki ana ki ngā take maha, tae atu ki te rahi o te pūngāwerewere, te wāhi, me ngā maimoatanga e hiahiatia ana. He maha ngā tamariki e pupuri ana i te kite pai i tetahi kanohi iti rawa. Ahakoa te pānga o te kite, ka taea e ngā tamariki te whakarite pai, ā, ka taea te whai wāhi ki te nuinga o ngā mahi noa. Ka kōrero tō tohunga kanohi mō ngā tumanakohanga pono e rite ana ki te āhuatanga motuhake o tō tamaiti.

He mate pāhekeheke te retinoblastoma, he mea rānei i mahi ahau?

Kāore te retinoblastoma he mate pāhekeheke, kāore hoki e hora atu i tetahi tangata ki tētahi atu. Kāore hoki i puta mai i tetahi mea i mahi rānei, kāore rānei ngā mātua i te wā hapu, i te tiaki tamariki rānei. Ka puta ngā huringa ira e ārahi ana ki te retinoblastoma i te āhua noa i te nuinga o ngā keehi. Kaua rawa ngā mātua e whakahe ki a rātou mō te whakatau o tō rātou tamaiti.

Me pehea te auau o te tiaki whai muri mō taku tamaiti?

Ko ngā kaupapa whai muri e rerekē ana e whakawhirinaki ana ki te maimoatanga o tō tamaiti, me te mea rānei he ahua whakawhiwhia. I te tīmatanga, pea ka marama, i ia torutoru marama rānei ngā haerenga. I te wa e haere ana te wā, ā, e noho kore mate pukupuku ana tō tamaiti, ka iti haere ngā haerenga. Ko ngā tamariki he retinoblastoma whakawhiwhia e hiahia ana ki te tirotiro ora tonu, nā te mea he nui ake te tūpono ki ētahi atu mate pukupuku.

Me kōrerotia e ahau ki ōku tamariki ke atu mō te whakatau o tō rātou teina/tuahine?

Ko te pono e rite ana ki te tau te mahi pai. Ko ngā tamariki iti e hiahia ana ki ngā whakamārama ngāwari penei i te "tō teina/tuahine he pūtau mate i roto i tō rātou kanohi e āwhina ana ngā tākuta ki te pai ake." Ka taea e ngā tamariki pakeke te mārama ki ētahi atu mōhiohio. Whakamārama atu ki ō tamariki katoa kāore te retinoblastoma he mate pāhekeheke, ā, kei te mahi kaha te rōpū hauora hei āwhina. Whakaarohia te whakauru i tētahi kaiāwhina e tohunga ana ki te āwhina i ngā whānau ki te whakahaere i te mate pukupuku tamariki.