Ua ʻike anei ʻoe i kēia ʻano hoʻoilina e hoʻonui ai i kou pilikia o ka maʻi kanesa? (MUTYH-Associated Polyposis - MAP)

Malia paha ua loaʻa i kekahi o kou ʻohana ka maʻi ʻaʻai kolona. A i ʻole ua haʻi aku kāu kauka iā ʻoe he mau polyp kou i loko o kou kolona? He mea maʻamau ka makaʻu a me ka hopohopo ke lohe ʻoe i kahi mea e like me kēia. Akā i ka wā e ʻike pono ai mākou i ke kumu, hiki iā mākou ke hoʻomaopopo pehea e hana ai. I kēia lā e kamaʻilio mākou e pili ana i kahi kūlana genetic e hiki ke hoʻoulu i kēia mau kūlana, akā ʻaʻole i kamaʻilio nui ʻia i loko o ke kaiāulu. ʻO ia ka MAP.

I ka ʻōlelo maʻalahi, he aha ka MAP (MUTYH-Associated Polyposis)?

ʻO MAP, a i ʻole `(MUTYH-Associated Polyposis)` he maʻi hoʻoilina laha ʻole loa ia. ʻO kēia ka wā e ulu ai nā ulu liʻiliʻi, ʻano ʻē, a i ʻole nā ​​nodules, i loko o ko mākou kino, ʻoi aku hoʻi ma ke ala ʻai. Ma nā ʻōlelo lapaʻau, kapa mākou i kēia mau mea `(Polyps)`.

I kēia manawa, ke noʻonoʻo nei paha ʻoe, "Auē kuʻu Akua, ʻo ka loaʻa ʻana o nā polyps ke ʻano o ka maʻi kanesa?" ʻAʻole, ʻaʻole kēia mau polyps he maʻi kanesa. Akā, ʻo ka mea nui, ʻo kekahi o kēia mau mea, inā ʻaʻole mākou e mālama pono iā lākou, inā ʻaʻole mākou e wehe iā lākou, loaʻa iā lākou kahi manawa kiʻekiʻe e lilo ai i maʻi kanesa i ka hala ʻana o ka manawa.

ʻO kēia mau "Polyps" ka mea hiki ke hana ʻia i loko o ke kino o ke kanaka me MAP:

• Kolon
• ʻUmiʻumi
• ʻōpū liʻiliʻi
• ʻōpū

He pilikia anei ka loaʻa ʻana o ka MAP i ka maʻi kanesa?

ʻAe, ʻo ka pane pololei i kēia nīnau ʻo "ʻae." ʻOi aku ka nui o ka pilikia o ka loaʻa ʻana o ke kanesa colorectal i ke kanaka me MAP ma mua o ke kanaka maʻamau. ʻO ka ʻoiaʻiʻo, ua ʻike kekahi mau noiʻi ua loaʻa i ka hapalua o ka poʻe i ʻike mua ʻia me MAP ke kanesa colorectal.

ʻIke pinepine ʻia kēia mau maʻi kanesa ma waena o 40 a me 60 mau makahiki. Akā i kekahi manawa hiki iā lākou ke ulu ma mua. Eia kekahi, ma waho aʻe o ke kanesa colon, aia kekahi pilikia o ka hoʻomohala ʻana i ke kanesa duodenal a me nā ʻano kanesa ʻē aʻe ma waho o ka ʻōnaehana hoʻoheheʻe.

Hiki ke ola maʻamau me kēia maʻi?

ʻOiaʻiʻo nō. ʻO kēia ka mea nui loa āu e hoʻomanaʻo ai. Hiki i ka hapa nui o ka poʻe me MAP ke ola i kahi ola maʻamau, olakino, a piha. Akā aia kekahi mea huna i kēlā. ʻO ia ka ʻike mua ʻana i nā hōʻailona a loaʻa nā hoʻokolohua nānā maʻamau no ka maʻi kanesa.

ʻIke a wehe kēia mau hoʻokolohua i nā polyp a mākou i ʻōlelo ai ma mua ma mua o ko lākou lilo ʻana i ka maʻi kanesa. ʻO ka hana ʻana pēlā e hiki ai ke hōʻemi nui i ka pilikia o ka loaʻa ʻana o ka maʻi kanesa.

He aha nā hōʻailona o ke kūlana MAP?

ʻO kēia kahi e huikau ai ka poʻe he nui. ʻAʻohe hōʻailona āu e ʻike ai a manaʻo paha ma waho, he mea kūikawā ia iā MAP. ʻOiai inā he nui nā polyps i loko o kou ʻōpū, ʻaʻole paha ʻoe e manaʻo i ka ʻeha a i ʻole ka ʻoluʻolu ʻole mai ia mau mea.

No laila, ʻo ka loaʻa ʻana o `(Polyps)` wale nō ʻaʻole ia he hōʻailona maikaʻi o ka loaʻa ʻana o MAP. Aia kekahi mau kumu no kēia:

• He nui ka poʻe i loaʻa nā polyps akā ʻaʻohe MAP. Hiki ke ulu aʻe nā polyps ma muli o nā kūlana olakino ʻē aʻe.
• Aia kekahi mau maʻi hoʻoilina ʻē aʻe e hoʻoulu ai i nā ʻano `(Polyps)` e like me MAP. ʻO kahi laʻana ʻo `(Familial Adenomatous Polyposis - FAP)`.
• I kekahi manawa, ke ʻike ʻia kekahi me MAP, ʻaʻohe paha o lākou "polyp" hoʻokahi i loko o ko lākou kino.

I ka ʻōlelo maʻalahi, hiki i nā hoʻokolohua genetic ke haʻi maopopo inā he MAP, FAP, a i ʻole kekahi maʻi ʻē aʻe kāu.

No ke aha i hoʻokumu ʻia ai kēia MAP? Pehea e hoʻoili ʻia ai i nā hanauna?

Hoʻokumu ʻia ʻo MAP e kahi loli, a i ʻole mutation, i loko o kahi gene i kapa ʻia ʻo `MUTYH` (i kapa ʻia hoʻi ʻo MYH). E noʻonoʻo i ko kākou kino e like me kahi puke kuhikuhi nui, a ʻo nā genes nā kuhikuhi i loko. Inā hewa kekahi leka i loko o ka kuhikuhi `MUTYH`, ʻaʻole e hana pono ka huahana āna e hana ai. Pēlā nō ʻo MAP.

Ua kapa mākou i kēia maʻi i hoʻoilina ʻia he "autosomal recessive." ʻO ke ʻano kēia, i mea e loaʻa ai kēia maʻi iā ʻoe, pono ʻoe e hoʻoilina i kēia gene hemahema mai kou makuahine a me kou makuakāne, ʻo ia hoʻi, mai nā mākua ʻelua.

E noʻonoʻo ua loaʻa iā ʻoe kēia gene hemahema mai kekahi kanaka. Eia kekahi laʻana, mai kou makuahine wale nō. A laila, ʻaʻole ʻoe e loaʻa i ka maʻi MAP. Akā ua kapa ʻia ʻoe he "mea lawe" MAP. ʻO ia hoʻi, loaʻa iā ʻoe ka gene hemahema, akā ʻaʻohe ou maʻi. Inā he mea lawe ʻoe, hiki iā ʻoe ke hoʻoili i kēia gene i kekahi o kāu mau keiki.

Ua manaʻo ʻia aia ma waena o 1% a me 2% o ka heluna kanaka o ka honua he poʻe lawe MAP. Loaʻa i ka poʻe lawe ka maʻi he ʻoi aku ka kiʻekiʻe o ka pilikia o ka loaʻa ʻana o ka maʻi ʻaʻai kolona ma mua o ka heluna kanaka maʻamau, akā ʻaʻole kiʻekiʻe e like me kekahi me MAP.

He aha ka mea e hana ʻia i nā keiki inā he mau mea lawe MAP nā mākua ʻelua?

He mea maʻalahi loa kēia e hoʻomaopopo. Inā he mau mea lawe nā mākua ʻelua, ʻekolu mau mea hiki no kēlā me kēia keiki a lāua.

Pehea e ʻike pono ai inā he MAP kaʻu?

Hana pinepine ʻia ka ʻike ʻana o MAP ma kekahi mau ʻanuʻu.

1. Mōʻaukala olakino ʻohana: ʻO ka mea mua, e nīnau kāu kauka e pili ana i ka mōʻaukala olakino o kou ʻohana. Hoʻokomo pū kēia i kekahi mōʻaukala o ke kanesa a i ʻole nā ​​​​​​kūlana olakino ʻē aʻe i kou mau mākua, nā kūpuna, a me nā kaikaina.

2. Nā Hoʻāʻo Hoʻoilina: Inā kānalua kāu kauka i kahi kūlana hoʻoilina e pili ana i kou mōʻaukala ʻohana, hiki iā ia ke kuhikuhi iā ʻoe no ka hoʻāʻo hoʻoilina. Hiki i kēia hoʻāʻo ke hoʻoholo inā he mutation kou i loko o ka gene 'MUTYH' a i ʻole nā ​​​​kūlana hoʻoilina ʻē aʻe e hoʻonui ai i kou pilikia o ka maʻi kanesa.

E ʻōlelo pinepine ke kauka i ka hoʻāʻo genetic i nā hihia aʻe:

• Inā loaʻa i kekahi o kou ʻohana nā maʻi hoʻoilina e like me MAP a i ʻole FAP.
• Inā ua loaʻa i kekahi mau lālā o kou ʻohana ka maʻi ʻaʻai colon.
• He nui nā polyp i loko o ka colon o kekahi o kou mau kaikunāne a kaikuahine paha, akā, ʻaʻohe o ko lākou mau mākua (ke hāpai nei kēia i ka manaʻo he mau mea lawe maʻi paha nā mākua).

Inā hōʻoia ka hoʻāʻo genetic ua loaʻa iā ʻoe ka MAP a i ʻole he mea lawe ʻoe, e kamaʻilio kāu kauka me ʻoe me nā kikoʻī e pili ana i nā ʻanuʻu aʻe a me nā hoʻokolohua āu e pono ai e hana e pale iā ʻoe iho mai ka maʻi kanesa. He mea nui loa hoʻi e kaʻana like i kēia ʻike me ke koena o kou ʻohana, no ka mea e kōkua ia iā lākou e hoʻāʻo ʻia inā makemake lākou.

Ka mālama ʻana a me ka hoʻokele ʻana no MAP

ʻAʻohe "lāʻau lapaʻau" i kēia manawa no ka hoʻololi ʻana o ka genetic e hoʻoulu ai i ka MAP. Eia nō naʻe, nui nā hoʻokolohua a me nā lāʻau lapaʻau e hiki ke kōkua iā mākou e pale aku i ka maʻi kanesa, a i ʻole e ʻike a mālama i ka maʻi kanesa i ka wā mua loa.

Inā loaʻa iā ʻoe ka MAP, pono paha ʻoe e hana i nā hoʻokolohua nānā ʻana i ka maʻi kanesa ma mua a ʻoi aku ka pinepine ma mua o ke kanaka maʻamau.

Nā mea ʻē aʻe e ʻike ai i ka wā e hana ai me kēia ʻano maʻi

Hiki iaʻu ke pale aku i kēia mai ka hiki ʻana mai i kaʻu mau keiki?

ʻAʻohe ala e pale aku ai i ka mutation i loko o ka gene MUTYH. Eia nō naʻe, aia nā ʻano hana hānau kōkua e hiki ke hōʻemi i ka pilikia o kahi keiki e hiki mai ana e hoʻoilina i ka MAP. ʻO kahi laʻana he kaʻina hana i kapa ʻia ʻo preimplantation genetic diagnosis (PGD) i hana ʻia me ka in vitro fertilization (IVF). Pili kēia i ka hoʻāʻo ʻana i ka embryo no nā maʻi genetic ma mua o ka hoʻokomo ʻia ʻana i loko o ka ʻōpū o ka makuahine. Eia nō naʻe, he hoʻoholo paʻakikī loa kēia, ma ke kālā a me ka naʻau. Inā makemake ʻoe i kēia, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kahi endocrinologist hānau kūpono.

Pehea e noho ikaika ai ka noʻonoʻo?

Ke ʻike ʻoe he kiʻekiʻe aʻe kou pilikia o ka loaʻa ʻana o ka maʻi kanesa, hiki iā ʻoe ke hopohopo, makaʻu, a kaumaha hoʻi. He mea maʻamau kēia. Akā, mai ho'āʻo e hoʻoponopono wale i kēia mau manaʻo. E kamaʻilio me kāu kauka e pili ana i ia mea. Loaʻa ka hoʻoponopono kamaʻilio a, inā pono, nā lāʻau lapaʻau.

Eia kekahi, he kōkua nui ia inā hiki iā ʻoe ke hui pū me nā hui kākoʻo kahi e hiki ai iā ʻoe ke kamaʻilio me ka poʻe i loaʻa nā ʻike like. E hoʻomanaʻo ʻaʻole ʻoe hoʻokahi.