Kei te mōrearea te roro o tāu tamaiti? Me kōrero tātou mō te medulloblastoma!

Kua rongo koe i te Medulloblastoma? Kāore pea. He momo mate pukupuku roro tēnei e kitea nuitia ana i roto i ngā tamariki nohinohi, inā koa ko te hunga kei raro iho i te 16 tau te pakeke. Kaua e manukanuka, kia mārama tātou ki tēnei. Nā te mea he mea nui kia mōhio ki tēnei mate.

Nā, he aha te medulloblastoma?

I te whakarapopototanga, he pukupuku matepukupuku te medulloblastoma e tupu ana i roto i tō pūnaha io matua (CNS) , arā, tō roro me tō taurakira. I te nuinga o te wā ka tupu i roto i te wāhanga o tō roro e kiia nei ko te cerebellum, kei muri o tō roro. I mōhio koe ko tēnei roro iti te kaiwhakahaere i ngā mea maha i roto i tō tinana, pērā i te taurite, te hikoi, me te neke i ō ringa me ō waewae?

Ko te nuinga o te wā ka pāngia ngā tamariki me ngā taiohi kei raro iho i te 16 tau te pakeke e tēnei mate. Heoi, ka pāngia hoki ngā pakeke e tēnei mate, ahakoa he onge. Mena ka pāngia ngā pakeke, ka kitea i waenga i te 20 me te 45 tau te pakeke.

He momo mate pukupuku tino onge tēnei. Heoi, koinei te momo mate pukupuku roro e tino kitea ana i roto i ngā tamariki . Ko te nuinga o te wā ka kitea i roto i ngā tamariki i waenga i te 5 me te 9 tau te pakeke.

Ka tere te tipu o ngā pukupuku Medulloblastoma, ā, ka horapa ki ētahi atu wāhanga o te roro me te taurakira mā te wai cerebrospinal, te wai mārama e karapoti ana, e tiaki ana i tō tātou roro me te taurakira.

He aha ngā tohu o tēnei? Me pēhea e mōhio ai koe ki tēnei?

Ka rerekē ngā tohu o te Medulloblastoma i ia tangata, i ia tangata. Ka whakawhirinaki ki ngā āhuatanga pēnei i tō tau, te rahi o te pukupuku, me te tawhiti kua tipu. Ko ētahi tohu ka puta mai i te wāhi o te pukupuku, i te pikinga rānei o te pēhanga i roto i te angaanga. He mea pai kia tūpato ki ēnei mea:

• Te ānini pinepine: Tērā pea he rerekē tēnei i te ānini noa, ā, tērā pea ka kaha ake i te ata.
• Whakapairuaki me te ruaki: Ka kitea tēnei āhuatanga i te ata.
• Ngā raruraru taurite: Te āhua pōturi i te hikoi, te kore e taea te tū tika.
• Te uaua ki te hikoi: Kāore e taea te tū tika i runga i ō waewae, te uaua ki te piki me te heke i ngā arawhata.
• Whatiwhati: Ko te āhua kei te hurihuri haere ngā mea i tō taha.
• Ngā huringa tirohanga: Te pōuri ohorere o te tirohanga, te tirohanga takirua.
• Ngenge: Te āhua nei kāore koe e ngenge ahakoa te roa o te moe.
• Mamae tuara: I ētahi wā, ka pā te mamae tuara mēnā ka horapa te mate pukupuku ki te taurakira.
• Te kore e taea te whakahaere i te mimi me te paru:Ahakoa i pai tō mana whakahaere i mua, me āwangawanga koe mēnā ka puta ohorere mai ngā raruraru pēnei. Mō ngā tamariki nohinohi, ka piki ake pea te auau o ngā 'aituā'.

Kaua e wehi i te medulloblastoma nā te mea kotahi, e rua rānei o ēnei tohu kei a koe. Heoi, ki te mea he maha ō tohu e pā ana ki a koe, inā koa he tamaiti nohinohi, he mea whakaaro nui kia toro atu koe ki te tākuta mō ētahi tohutohu.

He aha te take e puta ai te medulloblastoma? He aha ngā take?

Kāore anō kia tino mōhiotia e ngā tākuta te pūtake o te medulloblastoma. Heoi, kua kitea ko ētahi mate ira ka whakapiki ake i te mōrearea o te whanaketanga. Ko te tikanga o tēnei, ko ētahi huringa ira kua tukuna iho i roto i ngā whakatipuranga ka pā ki tēnei mate.

Anei ētahi āhuatanga ira e whakanui ake ana i taua mōrearea:

• Ngā whakarerekētanga ira BRCA1: Kua rongo pea koe i ngā ira BRCA1 me BRCA2. Ko ngā pūmua e hangaia ana e rātou te kawenga mō te whakatika i tō tātou DNA ina pakaru. Ko te hunga e whiwhi ana i ētahi momo ira o ēnei ira ka nui ake te mōrearea ki te whakawhanake i ētahi momo mate pukupuku.
• `Nevoid basal cell carcinoma syndrome (NBCCS): Ka kiia hoki tēnei ko `Gorlin syndrome.` He mate tuku iho anō hoki tēnei. He nui ake te tūponotanga o te hunga whai mate pukupuku kiri pūtau basal ki te whakawhanake i tēnei. E 5% hoki te tūponotanga ka whanakehia he medulloblastoma.
• Te mate Turcot: Ko te hunga whai mate pēnei ka whanake pea he pukupuku pūnaha io matua, pērā i te medulloblastoma, te pituitary adenoma rānei, me te mate pukupuku koroni.
• Te mate Li-Fraumeni: Ko te hunga whai mate pēnei ka nui ake te mōrearea ki te whakawhanake i ngā sarcomas, te mate pukupuku ū, ētahi atu momo mate pukupuku roro (gliomas, choroid plexus carcinomas), te mate pukupuku repe adrenal, me te leukemia.

He tino uaua ēnei āhuatanga ira. Ki te hiahia koe ki te mōhio atu mō tēnei, he pai ake te kōrero ki tētahi tākuta.

Me pēhea te tautuhi a ngā tākuta i tēnei?

Mena kei a koe, kei tāu tamaiti rānei tētahi o ngā tohu kua whakahuatia ake nei, ka kōrero tuatahi tō tākuta ki a koe mō ō tohu, ā, ka tirohia anō hoki e ia te hītori hauora o tō whānau. Kātahi, ki te whakapae rātou he medulloblastoma, ka tonoa e rātou ētahi whakamātautau hei whakaū i te mate.

He aha ngā whakamātautau e mahia ana i te nuinga o te wā?

• Whakamātautau io: I tēnei whakamātautau, ka tirohia e te tākuta tō whakarongo, tō tirohanga, tō taunga, me ō urupare. Mā tēnei ka taea e koe te mōhio ko tēhea wāhanga o te roro e pāngia ana.
• `Ngā whakamātautau whakaahua`:Kei roto i tēnei ko te matawai MRI (Magnetic Resonance Imaging) me te matawai CT (Computed Tomography). Ka taea e ēnei matawai te kite mārama mēnā he pukupuku kei roto i te roro, tōna rahi, me tōna wāhi kei reira.
• Biopsy: I ētahi wā, me tango e ngā tākuta tētahi tauira iti o te kiko mai i te puku ka tukuna ki tētahi tohunga mate pukupuku, he tākuta e tohunga ana ki te tirotiro i te kiko. He maha ngā wā ka mahia he biopsy mēnā kāore e taea te whakaū i te mate mā te matawai anake.
• Te Tātari Tuaiwi (Lumbar Puncture): I tēnei tikanga, ka tangohia e te taote pokanga he tauira iti o te wai cerebrospinal ka tirohia mēnā he pūtau matepukupuku. I te nuinga o te wā ka mahia tēnei whakamātautau i muri i te tangohanga o te pukupuku, i te whakahaere rānei i te pēhanga i roto i te roro.

He aha ngā maimoatanga mō te Medulloblastoma?

He maha ngā āhuatanga e whakawhirinaki ana ki ngā kōwhiringa maimoatanga, tae atu ki tō tau, tō hauora whānui, me te rahi o te pukupuku. I te nuinga o te wā, ko te maimoatanga matua mō te medulloblastoma he pokanga hei tango i te pukupuku. Ka whai ake pea tēnei i te chemotherapy, te radiation therapy, ngā mea e rua rānei.

• `Pokanga`: Ka mahia tēnei pokanga e te `Taonga Pokanga`. Ka taea e tēnei te whakaiti i te pēhanga i roto i te roro, te tango katoa rānei i te pukupuku. Heoi, i ētahi wā, ki te mea kei roto rawa te pukupuku i te roro, i ngā wāhi tairongo, ka uaua pea te tango katoa.
• Whakaora irahiko: Ka whakamahia tēnei maimoatanga hei whakangaro i ngā pūtau matepukupuku e toe ana i muri i te pokanga. I ētahi wā ka hoatu ngātahitia me te chemotherapy.
• Te rongoā matū: Ka hoatu tēnei maimoatanga e te tākuta mate pukupuku. Ka taea te hoatu i ēnei rongoā i muri i te pokanga, i muri i te rongoā irahiko, i te taha rānei o te rongoā irahiko. I ētahi wā, ka taea te hoatu he whakawhitinga pūtau take i muri i te rongoā matū.

Kia maumahara, ko ēnei maimoatanga katoa ka whakatauhia e tētahi tīma tākuta, ā, ka whakaritea kia rite ki tō āhuatanga.

Kia pēhea te roa o te wā e ora ai? (Te Wā Whakaora)

He rerekē te roa o te maimoatanga me te wā whakaora i ia tangata, i ia tangata. Mena ka pokangahia tō roro, e whā ki te waru wiki te roa o te whakaora . Mena ka whiwhi koe i te chemotherapy, i te radiation therapy rānei, ka roa pea ētahi wiki, ētahi marama rānei. Kei te āhua o te mate. Kia mōhio ai koe ki te roa o te wā e hiahiatia ana mōu, mō tāu tamaiti rānei, he pai ake te kōrero ki tō tākuta.

Āhea ahau me toro atu ki te tākuta?

Mena kei a koe, kei tāu tamaiti rānei ētahi o ngā tohu kua whakarārangihia i runga ake nei (pēnei i te ānini, te whakapairuaki, te pōhēhē, te panoni o te tirohanga), me toro atu ki te tākuta tonu . Waihoki, ki te mea kei te rongoatia kētia koe mō te medulloblastoma, me kōrero ki tō tākuta mō ngā pānga taha e pā ana ki a koe. Ka taea e rātou te āwhina ki te whakahaere i ō tohu me te whakaiti i tō mamae.

He aha ngā mea ka taea e te tangata whai medulloblastoma te tumanako atu?

He nui te tīma hauora hei āwhina i a koe i tēnei āhuatanga. Ko ētahi o ēnei ko:

• Ngā tākuta mate pukupuku hauora
• Ngā taote pokanga roro
• Ngā Tākuta Mate
• Ngā kaiwhakaora tinana
• Ngā tohunga hihi-X
• Ngā tohunga mate pukupuku irahiko
• Tērā pea kei roto ko ngā tāngata pēnei i ngā 'Neuropsychologists'.

Ka mahi tahi rāua ki te waihanga i tētahi mahere maimoatanga whaiaro e rite ana ki ō hiahia.

Ka taea te rongoā i te Medulloblastoma?

Ae, i te nuinga o ngā wā. Ahakoa he mate te medulloblastoma ka horapa puta noa i te pūnaha io, he maha ngā tāngata ka taea te whakaora. Ina koa mēnā kāore te mate pukupuku i horapa ki ētahi atu wāhanga o te roro me te taurakira, he nui te tūponotanga ka ora.

He aha te matapae mō tēnei?

Neke atu i te 80% te ōrau oranga mō te medulloblastoma i roto i ngā tau e rima. Ko te tikanga tēnei neke atu i te 80% o te hunga kua tāpaetia he medulloblastoma kei te ora tonu i muri i ngā tau e rima. I ahu mai ēnei tatauranga i ngā putanga o te hunga kua pāngia e te mate i mua.

Engari kia maumahara, kāore e taea e ēnei tatauranga te whakaatu tika i te āhua o tō mate. Kia mōhio ai koe ki tō mate me ngā au o te whakaoranga, he pai ake te kōrero ki tō tākuta.

Ka taea e te rongonga mō te pukupuku roro te whakararuraru i te tinana, te hinengaro, me te kare ā-roto. Ina koa ka pā ki tāu tamaiti, ka taea te whakararuraru. Heoi, kei reira ngā maimoatanga whai hua, nō reira kei reira te tumanako . Pātai atu ki tō tākuta mō ngā maimoatanga hou, pēnei i ngā whakamātautau haumanu. Me kōrero hoki ki tō tākuta mō ngā rauemi me ngā rōpū tautoko hei āwhina i a koe. I tēnei wā uaua, he puna nui te kaha me te whakamarie ki te noho tahi me te hunga kua pā ki ngā āhuatanga rite tonu ki a koe.

Hei whakarāpopototanga, ngā mea hei maumahara

Āe, me whakamahara atu tātou ki a koe ētahi o ngā mea tino nui kua kōrerohia e tātou mō te medulloblastoma:

• Ko te Medulloblastoma he mate pukupuku roro e pā ana ki ngā tamariki., engari ka taea hoki e ngā pakeke te pāngia e tēnei mate.
• Kia tūpato ki ngā tohu pēnei i te ānini, te ruaki, me te ngaronga o te taurite.
• Ahakoa kāore i te mōhiotia te tino take , tera pea ētahi āhuatanga ira e whai wāhi ana.
• Ka tautuhia te mate mā roto i ngā whakamātautau pēnei i te MRI, te CT scan, me te biopsy.
• Kei reira ngā tikanga maimoatanga pēnei i te pokanga, te chemotherapy, me te radiation therapy.
• He nui te tūponotanga ka ora , ina koa mēnā ka kitea me te rongoatia i te wā wawe.
• Ki te pā mai ētahi tohu , kaua e wehi ki te toro atu ki te tākuta .

Ko tāku tumanako he whai hua ēnei mōhiohio ki a koe. Kia maumahara, ehara i te mea ko koe anake. Mena he pātai āu, kaua e mangere ki te kōrero ki te tākuta.

` Medulloblastoma, mate pukupuku roro, mate pukupuku tamarikitanga, pūnaha io, tohumate mate pukupuku, maimoatanga mate pukupuku, mate ira