E mōhio ana koe ki te MUTYH-Associated Polyposis (MAP)? Me kōrero tāua!

Kua rongo kē koe i tēnei ingoa (MUTYH-Associated Polyposis)? Kāore pea. He mate tuku iho onge, engari he mea nui pea. Nā tēnei, ka taea e ngā tipu iti, e kiia nei ko (polyps), te whanake i ētahi wāhanga o te tinana. Koia te mea nui kia mōhio koe ki tēnei.

He aha te MUTYH gene-associated polyposis (MAP)?

Ki te kī ngāwari, ko te (MUTYH-Associated Polyposis), (MAP) rānei, he āhuatanga e tukuna iho ana i roto i ō tātou ira mai i tētahi whakatipuranga ki tētahi whakatipuranga. Ko te mea ka tupu i roto i tēnei , ko ngā tipu kiko iti, kāore e hiahiatia ana e kiia nei ko (polyps) ka puta i roto i ō tātou tinana, inā koa i roto i te koroni me te rectum. Ehara ēnei (polyps) i te mate pukupuku. Heoi, ki te kore ētahi o aua mea e tangohia, ka nui ake te tūponotanga ka noho hei mate pukupuku i roto i te wā. Ka taea e ēnei (polyps) te whanake ehara i te mea i roto i te koroni anake, engari i ētahi wā i roto i te whekau iti me te puku hoki.

He mōrearea anō hoki tēnei mate MAP ki te mate pukupuku?

Āe, tino tika. Mena kei a koe te mate pukupuku koroni (MAP), he nui ake te tūponotanga ki te pāngia e te mate pukupuku koroni i te tangata kāore i te pāngia e te mate. Whakaarohia, tata ki te haurua o te hunga whai mate pukupuku koroni (MAP) kua pāngia kētia e te mate pukupuku koroni ina kitea te mate pukupuku koroni (MAP)! I te nuinga o te wā, ka puta ēnei mate pukupuku i waenga i te 40 me te 60 tau te pakeke. Engari i ētahi wā ka puta wawe mai. Ehara i te mea koinā anake, tera pea ka pāngia koe e te mate pukupuku duodenal me ētahi atu momo mate pukupuku i waho o te pūnaha nakunaku (te ara gastrointestinal (GI).

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He aha te roanga o te oranga o te tangata whai MAP?

Kaua e wehi ki te whakarongo ki tēnei. Ko te nuinga o te hunga whai (MAP) ka taea te noho noa, engari kotahi te tikanga. Arā, me tīmata wawe ngā tirotiro mate pukupuku, me te mahi i aua tirotiro i ia wā . Ko te mea nui ko te kimi me te tango i ēnei (polyps) i mua i te huri hei mate pukupuku. Ko reira anake ka taea ai e tātou te noho hauora.

He aha ngā tohu o te MUTYH gene-associated polyposis (MAP)?

Anei te raruraru. Kāore koe e kite, e rongo rānei i ngā tohu o te MAP. Ahakoa he polyp kei roto i tō ara kai, he maha ngā wā kāore e puta he tohu. Nō reira, ko te noho mai o ngā polyp anake ehara i te tohu pono kei a koe te MAP. Nā te mea:

• Ahakoa he maha ngā tāngata he polyp, tērā pea kāore he MAP i a rātou.
• Ka taea hoki e ētahi atu āhuatanga ira, pērā i te Familial Adenomatous Polyposis (FAP), te whakaputa i ngā polyp i roto i te koroni. Ko ngā whakamātautau ira anake ka taea te kī mēnā kei a koe te FAP, te MAP, tētahi atu āhuatanga ira rānei.
• I ētahi wā, ahakoa kua tautuhia he MAP kei a rātou, tera pea kāore he polyp i roto i ētahi tāngata.

He aha te take o tēnei āhuatanga MAP?

Ko te MAP te take o te whakarerekētanga ira i roto i tō tātou ira MUTYH (e mōhiotia ana ko MYH). Ka tukuna iho i roto i te tikanga autosomal recessive . Ko te tikanga o tēnei, kia pāngia ai koe e te mate, me whiwhi koe i te whakarerekētanga ira mai i ō mātua e rua. Ki te riro i a koe te whakarerekētanga ira mai i tētahi o ō mātua anake, e kore koe e pāngia e te MAP. Heoi, he kaikawe koe i te MAP. Ko te tikanga o te kawe, ki te mea he kaikawe anō hoki tō mātua tūturu, ka taea e koe te tuku atu ki tō tamaiti.

E ai ki te whakatau tata nei, kei waenganui i te 1% me te 2% o te taupori he kawe i te (MAP). He paku piki ake te mōrearea o te hunga kawe i te mate pukupuku koroni, engari kāore i te rite te teitei ki te hunga whai (MAP).

Me pēhea te tuku iho o tēnei āhuatanga (MAP) mai i tētahi whakatipuranga ki tētahi whakatipuranga?

Mehemea ko ngā mātua e rua he kawe i te mate (MAP). Mena koinā, ko te tūponotanga ka riro i ā rāua tamariki te mate penei:

• Kotahi i roto i te whā (25%) te tūponotanga kāore e riro mai te whakarerekētanga ira (MUTYH). Ko te tikanga tēnei kāore te tamaiti e pāngia e te mate, ā, kāore e taea e taua tamaiti te tuku i te whakarerekētanga ki ā rātou tamariki.
• E rua i roto i te whā (50%) te tūponotanga kia noho hei kaikawe. Ko te tikanga tēnei kāore te tamaiti e whanake (MAP), engari ka taea e ia te tuku i te whakarerekētanga ira ki ā rātou tamariki.
• Kotahi i roto i te whā (25%) te tūponotanga ka riro i ngā mātua e rua tēnei whakarerekētanga ira. Kātahi ka pāngia te tamaiti e te mate (MAP). Waihoki, ka tukuna e te tamaiti te iti rawa i te kotahi whakarerekētanga ira (MUTYH) ki ā rātou tamariki.

Me pēhea te tautuhi i te āhua (MAP)?

Ko te kimi mēnā kei a koe te MAP he mahi torutoru noa iho. Ka pātai tuatahi tō tākuta ki a koe mō tō hītori whānau. Ka pātai ia mō ngā mate pukupuku, ngā mate hauora rānei kua pā ki ō mātua, ki ō koroua, me ō tuākana, tuākana rānei.

Ki te whakapae tō tākuta kei a koe tētahi mate ira, ka tūtohu pea ia i ngā whakamātautau ira. Ka taea e ēnei whakamātautau te tautuhi i te whakarerekētanga ira (MUTYH) me ētahi atu mate ira e whakanui ake ana i tō mōrearea ki te mate pukupuku.

Ka tūtohu pea te tākuta i ngā whakamātautau ira i roto i ngā take e whai ake nei:

• Mena kei tētahi o tō whānau he (FAP), he (MAP) rānei, he mate ira rānei.
• Mena he hītori pakari tō whānau mō te mate pukupuku koroni.
• Mena he nui ngā polyp kei roto i te koroni o tētahi, o ētahi rānei o ō tuākana, teina rānei, engari kāore i ō mātua (ko te tikanga pea he kawe mate ō mātua).

Mena ka whakaūtia e tō whakamātautau ira kei a koe te mate pukupuku (MAP), kei a koe rānei te mate pukupuku, ka kōrero tō tākuta ki a koe mō ngā mahi e whai ake nei mō ngā tirotiro matepukupuku.He mea tino nui hoki kia whakamōhiotia tēnei ki te toenga o tō whānau kia taea ai e rātou te whakamātau i ngā ira mēnā e hiahia ana rātou.

Me pēhea te rongoā mō te MAP?

Ki te pono, kāore he rongoā mō te mate (MAP). Heoi, he maha ngā whakamātautau me ngā maimoatanga hei āwhina i te ārai i te mate pukupuku, ā, ki te puta te mate pukupuku, ka taea te kite me te rongoā i te wā tōmua.

Mena kei a koe (MAP), me tirotiro wawe koe mō te mate pukupuku, ā, me auau ake i te wā noa. Kei roto i ēnei:

• Kōnkorotirotiro: I te wā o te kōnkorotirotiro, ka whakamahia e tō tākuta tētahi ngongo rama motuhake me tētahi kāmera e piri ana ki roto hei tirotiro i roto i tō kōnkorotiro me tō pūtu. Ko te kōnkorotirotiro te huarahi pai ki te kimi me te tango i ngā porepo i roto i tō kōnkorotiro. Me tīmata koe ki te tiki kōnkorotirotiro i te 20 tau pea te pakeke, mēnā rānei kua pāngia tētahi o tō whānau e te matepukupuku kōnkorotiro, 10 tau i mua atu i te tau i pāngia ai rātou e te matepukupuku (ko tēhea te mea tuatahi).
• Te tirotiro i te pito o runga: Mā te tirotiro i te pito o runga ka taea e tō tākuta te kite me te tango i ngā polyp i roto i tō puku me te wāhanga o runga o tō whekau iti (duodenum). Mena kua kitea he polyp kei roto i tō koroni, me tīmata koe ki te tirotiro i te pito o runga i te 25 tau te pakeke, i mua atu rānei.

Ka taea te ārai i te mate?

Kāore he huarahi hei ārai i te puta o te whakarerekētanga ira (MUTYH). Arā, he mea tuku iho tēnei ki a tātou. Heoi, kei reira ngā tikanga āwhina whānau hei whakaiti i te mōrearea o te whiwhinga (MAP) a te tamaiti ā muri ake nei. Hei tauira, ko te (Preimplantation Genetic Diagnosis - PGD), e whakamahia ana me te (In Vitro Fertilization - IVF) , ka taea te whakanui ake i te tūponotanga o te whānau tamariki me te kore tēnei āhuatanga tuku iho. I roto i tēnei tikanga, ka whakamatautauria te āhua ira o te kukune i mua i te whakatōnga ki roto i te kōpū.

Heoi, ki te mea kei te mahi koe i te "PGD" me te "IVF", he nui te utu, ā, he maha ngā āhuatanga hinengaro hei whakaaroaro. He pai ake te tūtaki ki tētahi tohunga endocrinologist whai tohu ki te ako atu mō tēnei.

Mena kei a au (MAP), he aha taku e tumanako ai?

Mena kei a koe te (MAP), me tirotirohia pea koe mō te mate pukupuku i mua atu, ā, i ngā wā maha atu i ētahi atu. He pono tēnā. Heoi, mā te tiaki hauora me te aroturuki tika, ka taea e koe te noho ora. Nō reira, he mea nui kia kite i tō tākuta i ia wā, kia kōrerohia hoki ngā huarahi pai hei ārai i te mate pukupuku.

Me pēhea taku tiaki i ahau anō hei tangata whai (MAP)?

Ina mōhio koe kei te piki ake tō tupono ki te pangia e te mate pukupuku, ka arahi pea tēnei ki ngā raruraru hauora hinengaro pērā i te manukanuka, te pouri rānei. He mea noa tēnei. Mena kei a koe ēnei raruraru hinengaro, kaua e ngana ki te whakatau ko koe anake. He maha ngā maimoatanga me ngā tikanga tautoko, mai i te kōrero whakaora ki te rongoā.

Ka taea hoki e koe te rapu rauemi hapori hei whakarato whakamarie me te ārahi. Ka taea hoki e koe te whakauru atu ki ngā rōpū tautoko hei kōrero ki ētahi atu. I ngā wāhi pēnei, he puna kaha nui tēnei nā te mea ka taea e koe te kōrero ki te hunga kua pāngia e ngā āhuatanga ōrite ki a koe.

He tino taumaha te whai i tētahi mate ira e whakanui ana i tō tupono ki te pāngia e te mate pukupuku. Engari ehara i te mea ko koe anake. Kei konei tō tīma hauora hei āwhina i a koe. Mā ngā tikanga tirotiro mate pukupuku matatau o ēnei rā ka taea te whakaiti i tō tupono ki te pāngia e te mate pukupuku, ā, ka āwhina i a koe ki te kimi wawe i a ia.

Hei whakamutunga, ngā mea hei maumahara

Āe, kua mārama ake koe ināianei ki tā tātou i kōrero ai (MUTYH-Associated Polyposis - MAP). Anei ētahi mea nui hei maumahara māu:

• He mate ira tuku iho te MAP. Ka puta ngā polyp i roto i ngā whekau, ā, ka piki ake te mōrearea o te mate pukupuku koroni.
• Kāore e puta he tohu nui. Nō reira, ki te mea he hītori whānau mō te mate pukupuku, he mea nui kia whai whakamātautau ira i runga i te tohutohu a te taote.
• Ki te kitea tō mate pukupuku i te wā tika, kaua e mataku. Mā te whai i ngā whakamātautau pēnei i te (Colonoscopy) me te (Upper endoscopy) i te wā tika, ka taea te ārai, te kite rānei i te mate pukupuku i te wā tōmua.
• He mea tino nui anō hoki te hauora hinengaro. Ki te hiahia koe, kaua e mangere ki te rapu āwhina.
• Me noho tonu ki te whakapā atu ki tō tīma hauora, me te tiaki hoki i tō hauora.

Ko te tumanako ka whai hua ēnei mōhiohio ki a koe. Kia ora koutou ko tō whānau!