Ua ʻike anei ʻoe i ka MUTYH-Associated Polyposis (MAP)? E kamaʻilio kākou e pili ana!

Ua lohe paha ʻoe i kēia inoa ʻo `(MUTYH-Associated Polyposis)`? ʻAʻole paha. He ʻano hoʻoilina kakaikahi ia, akā he mea nui loa paha. Ma muli o kēia, hiki i nā ulu liʻiliʻi, i kapa ʻia ʻo `(polyps),` ke ulu ma kekahi mau ʻāpana o ke kino. No laila he mea nui e makaʻala i kēia.

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

ʻO ka ʻōlelo maʻalahi, ʻo `(MUTYH-Associated Polyposis)` a i ʻole `(MAP)` he ʻano ia i hoʻoili ʻia ma o kā mākou mau genes mai kēlā hanauna a i kēia hanauna. ʻO ka mea e hana ʻia ma kēia , ʻo ia ka ulu ʻana o nā ʻiʻo liʻiliʻi i makemake ʻole ʻia i kapa ʻia ʻo `(polyps)` i loko o ko mākou kino, ʻoi aku hoʻi ma ka colon a me ka rectum. ʻAʻole kēia mau `(polyps)` he maʻi kanesa. Eia naʻe, inā ʻaʻole i wehe ʻia kekahi o lākou, ʻoi aku ka nui o ko lākou manawa e lilo ai i maʻi kanesa i ka hala ʻana o ka manawa. Hiki i kēia mau `(polyps)` ke ulu ʻaʻole wale ma ka colon, akā i kekahi manawa ma ka ʻōpū liʻiliʻi a me ka ʻōpū pū kekahi.

Ke hele mai nei kēia maʻi MAP me ka pilikia o ka maʻi ʻaʻai?

ʻAe, ʻoiaʻiʻo nō. Inā loaʻa iā ʻoe (MAP), ʻoi aku ka kiʻekiʻe o kou pilikia o ka loaʻa ʻana o ke kanesa colorectal ma mua o ka mea ʻaʻohe ona maʻi. E noʻonoʻo wale, ma kahi o ka hapalua o ka poʻe me (MAP) i loaʻa mua i ke kanesa colorectal ke ʻike ʻia lākou me (MAP)! ʻO ka hapa nui, loaʻa kēia mau kanesa ma waena o 40 a me 60 mau makahiki. Akā i kekahi manawa hiki iā lākou ke ʻike mua ʻia. ʻAʻole wale ia, hiki paha iā ʻoe ke pilikia i ka loaʻa ʻana o ke kanesa duodenal a me nā ʻano kanesa ʻē aʻe ma waho o ka ʻōnaehana hoʻoheheʻe (gastrointestinal (GI) tract).

He aha ke kūlana o ke ola o kekahi me MAP?

Mai makaʻu i ka lohe ʻana i kēia. Hiki i ka hapa nui o ka poʻe me ka `(MAP)` ke ola i kahi ola maʻamau, akā aia kekahi kūlana. ʻO ia hoʻi, e hoʻomaka i nā nānā ʻana i ka maʻi kanesa i ka wā mua a hana mau iā lākou. ʻO ka mea nui loa, ʻo ia ka ʻimi a wehe i kēia mau `(polyps)` ma mua o ko lākou lilo ʻana i kanesa. A laila wale nō e hiki ai iā kākou ke noho olakino.

He aha nā hōʻailona o ka MUTYH gene-associated polyposis (MAP)?

Eia ka pilikia. ʻAʻole ʻoe e ʻike a manaʻo paha i kekahi mau hōʻailona o MAP. ʻOiai inā he polyps kou i loko o kou ʻōpū ʻai, ʻaʻole pinepine lākou e hana i kekahi mau hōʻailona. No laila, ʻo ka loaʻa ʻana o nā polyps wale nō ʻaʻole ia he hōʻailona hilinaʻi e loaʻa iā ʻoe ka MAP. No ka mea:

• ʻOiai he nui ka poʻe i loaʻa nā polyps, ʻaʻohe paha o lākou MAP.
• ʻO nā kūlana genetic ʻē aʻe, e like me Familial Adenomatous Polyposis (FAP), hiki ke hana i nā polyps i loko o ka colon. ʻO nā hoʻokolohua genetic wale nō ke ʻike maopopo inā he FAP, MAP, a i ʻole kekahi kūlana genetic ʻē aʻe.
• I kekahi manawa, ʻoiai ke ʻike ʻia lākou me MAP, ʻaʻohe paha polyps o kekahi poʻe.

He aha ke kumu o kēia kūlana MAP?

Hoʻokumu ʻia ka MAP e kahi mutation i loko o kā mākou gene MUTYH (i ʻike ʻia hoʻi ʻo MYH). Hoʻoilina ʻia ia ma ke ʻano autosomal recessive . ʻO ke ʻano kēia, no ka loaʻa ʻana o ke kūlana, pono ʻoe e hoʻoilina i ka mutation mai kou mau mākua ʻelua. Inā hoʻoilina ʻoe i ka mutation mai kekahi o kou mau mākua wale nō, ʻaʻole ʻoe e loaʻa iā MAP. Eia naʻe, he mea lawe ʻoe o MAP. ʻO ka lilo ʻana i mea lawe, ʻo ia hoʻi inā he mea lawe pū kekahi kou makua hānau ʻē aʻe, hiki iā ʻoe ke hoʻoili iā ia i kāu keiki.

Ua manaʻo ʻia i kēia manawa aia ma waena o 1% a me 2% o ka heluna kanaka he poʻe lawe i ka `(MAP)`. Loaʻa i nā mea lawe i kahi piʻi iki o ka pilikia o ka loaʻa ʻana o ka maʻi ʻaʻai kolona, ​​akā ʻaʻole i like ke kiʻekiʻe me ka poʻe me ka `(MAP)`.

Pehea e hoʻoilina ʻia ai kēia kūlana (MAP) mai kēlā hanauna a i kēia hanauna?

Inā paha he mau mea lawe o ka `(MAP)` nā mākua ʻelua. Inā pēlā, penei ka manawa kūpono e hoʻoilina ai kā lāua mau keiki i ke kūlana:

• Hoʻokahi i loko o ʻehā (25%) ka manawa kūpono e loaʻa ʻole ai ka hoʻololi ʻana o ka gene `(MUTYH)`. ʻO ke ʻano kēia, ʻaʻole e loaʻa i ke keiki ka maʻi, a ʻaʻole hiki i kēlā keiki ke hoʻoili i ka hoʻololi ʻana i kā lākou mau keiki.
• Aia he ʻelua o ka ʻehā (50%) manawa kūpono e lilo i mea lawe. ʻO ke ʻano kēia, ʻaʻole e ulu ke keiki (MAP), akā hiki ke hoʻoili i ka hoʻololi ʻana o ka genetic i kā lākou mau keiki.
• Hoʻokahi i loko o ʻehā (25%) ka manawa e hoʻoilina ai nā mākua ʻelua i kēia hoʻololi ʻana. A laila e loaʻa i ke keiki ke kūlana `(MAP)`. Eia kekahi, e hoʻoili ke keiki i hoʻokahi hoʻololi ʻana o ka gene `(MUTYH)` i kā lākou mau keiki.

Pehea e ʻike ai i ke kūlana (MAP)?

ʻO ka ʻike ʻana inā loaʻa iā ʻoe ka MAP maʻamau e pili ana i kekahi mau hana. E nīnau mua kāu kauka iā ʻoe e pili ana i kou mōʻaukala ʻohana me ka kikoʻī. E nīnau ʻo ia e pili ana i nā maʻi kanesa a i ʻole nā ​​​​​​maʻi olakino ʻē aʻe i loaʻa i kou mau mākua, kūpuna, a me nā kaikaina.

Inā kānalua kāu kauka he maʻi genetic paha kou, hiki iā ia ke ʻōlelo i nā hoʻokolohua genetic. Hiki i kēia mau hoʻokolohua ke ʻike i ka mutation gene (MUTYH) a me nā kūlana genetic ʻē aʻe e hoʻonui ai i kou pilikia o ka maʻi kanesa.

Hiki i ke kauka ke ʻōlelo i ka hoʻāʻo genetic i nā hihia aʻe:

• Inā loaʻa i kekahi o kou ʻohana ka `(FAP)`, `(MAP)` a i ʻole nā ​​​​maʻi hoʻoilina ʻē aʻe.
• Inā he moʻolelo ikaika ko kou ʻohana no ka maʻi ʻaʻai colon.
• Inā he nui nā polyp i loko o ko lākou kolona kekahi a ʻoi aku paha o kou mau kaikaina, akā ʻaʻole kou mau mākua (ʻo ia hoʻi, he mau mea lawe paha kou mau mākua).

Inā hōʻoia kāu hoʻāʻo ʻana i ka genetic ua loaʻa iā ʻoe (MAP) a i ʻole he mea lawe ʻoe, e kamaʻilio kāu kauka me ʻoe e pili ana i nā ʻanuʻu aʻe no ka nānā ʻana i ka maʻi kanesa.He mea nui hoʻi e hoʻomaopopo i ke koena o kou ʻohana e pili ana i kēia i hiki ai iā lākou ke loaʻa ka hoʻāʻo genetic inā makemake lākou.

Pehea e mālama ʻia ai ʻo MAP?

ʻO kaʻoiaʻiʻo, ʻaʻohe lāʻau lapaʻau no ke ʻano `(MAP).` Eia nō naʻe, he nui nā hoʻokolohua a me nā lāʻau lapaʻau e hiki ke kōkua i ka pale ʻana i ka maʻi kanesa a, inā loaʻa ka maʻi kanesa, e ʻike a mālama iā ia i ka wā mua.

Inā loaʻa iā ʻoe (MAP), pono paha ʻoe e hana i ka nānā ʻana no ka maʻi kanesa ma mua a ʻoi aku ka pinepine ma mua o ka maʻamau. ʻO kēia mau mea:

• Colonoscopy: I ka wā o ka colonoscopy, hoʻohana kāu kauka i kahi ʻōmole kukui kūikawā me kahi kāmela i hoʻopili ʻia iā ia e nānā i loko o kou kolona a me ka rectum. ʻO ka colonoscopy ke ala maikaʻi loa e ʻike ai a wehe i nā polyps i loko o kou kolona. Pono ʻoe e hoʻomaka e kiʻi i kāu colonoscopy ma kahi o 20 mau makahiki, a i ʻole inā ua loaʻa i kekahi o kou ʻohana ka maʻi ʻaʻai kolona, ​​10 mau makahiki ma mua o ka makahiki i loaʻa ai iā lākou ke kanesa (ʻo ka mea mua).
• ʻO ka endoscopy luna: ʻO ka endoscopy luna e ʻae i kāu kauka e ʻike a wehe i nā polyps i loko o kou ʻōpū a me ka ʻaoʻao o luna o kou ʻōpū liʻiliʻi (duodenum). Inā ua ʻike ʻia ʻoe me nā polyps i loko o kou kolona, ​​pono ʻoe e hoʻomaka e loaʻa nā endoscopies luna i ka makahiki 25, a i ʻole ma mua.

Hiki ke pale ʻia ke kūlana?

ʻAʻohe ala e pale aku ai i ka loli ʻana o ka gene `(MUTYH)`. ʻO ia hoʻi, he mea ia a kākou e hoʻoilina ai. Eia nō naʻe, aia nā ʻano hana hānau kōkua e hiki ke hōʻemi i ka pilikia o ka hoʻoilina ʻana o kahi keiki e hiki mai ana i ka `(MAP). No ka laʻana, ` (Preimplantation Genetic Diagnosis - PGD)`, i hoʻohana ʻia me ` (In Vitro Fertilization - IVF) , hiki ke hoʻonui i ka manawa e loaʻa ai kahi keiki me ka ʻole o kēia ʻano hoʻoilina. Ma kēia ʻano hana, hoʻāʻo ʻia ke ʻano genetic o ka embryo ma mua o ka hoʻokomo ʻia ʻana i loko o ka ʻōpū.

Eia nō naʻe, inā ʻoe e hana ana i ka "PGD" me ka "IVF", he nui ke kumukūʻai a he nui nā kumu noʻonoʻo e noʻonoʻo ai. ʻOi aku ka maikaʻi o ka hālāwai ʻana me kahi endocrinologist reproductive kūpono e aʻo hou e pili ana i kēia.

Inā loaʻa iaʻu (MAP), he aha kaʻu e manaʻo ai?

Inā loaʻa iā ʻoe ka `(MAP)`, pono paha ʻoe e nānā ʻia no ka maʻi kanesa ma mua a ʻoi aku ka pinepine ma mua o nā poʻe ʻē aʻe. He ʻoiaʻiʻo kēlā. Eia nō naʻe, me ka mālama olakino kūpono a me ka nānā ʻana, hiki iā ʻoe ke ola i kahi ola olakino. No laila, he mea nui e ʻike pinepine i kāu kauka a kūkākūkā i nā ala maikaʻi loa e pale aku ai i ka maʻi kanesa.

Pehea wau e mālama ai iaʻu iho ma ke ʻano he kanaka me (MAP)?

Ke ʻike ʻoe ua piʻi aʻe kou pilikia o ka loaʻa ʻana o ka maʻi kanesa, hiki iā ia ke alakaʻi i nā pilikia olakino noʻonoʻo e like me ka hopohopo a i ʻole ke kaumaha. He mea maʻamau kēia. Inā loaʻa iā ʻoe kēlā mau pilikia noʻonoʻo, e ʻoluʻolu, mai hoʻāʻo e hoʻoponopono iā lākou me lākou wale nō. Aia nā ʻano lapaʻau like ʻole a me nā ʻano kākoʻo, mai ka hoʻōla kamaʻilio a hiki i ka lāʻau lapaʻau.

Hiki iā ʻoe ke ʻimi i nā kumuwaiwai kaiāulu e hiki ke hāʻawi i ka hōʻoluʻolu a me ke alakaʻi. Hiki iā ʻoe ke hui pū me nā hui kākoʻo kahi e hiki ai iā ʻoe ke kamaʻilio me nā poʻe ʻē aʻe. Ma nā wahi e like me kēia, hiki ke lilo i kumu ikaika nui no ka mea hiki iā ʻoe ke kamaʻilio me nā poʻe i ʻike i nā mea like me ʻoe.

Hiki ke kaumaha nui ka loaʻa ʻana o kahi maʻi genetic e hoʻonui ai i kou pilikia o ka maʻi kanesa. Akā, ʻaʻole ʻoe hoʻokahi. Eia kāu hui mālama ola e kōkua iā ʻoe. Hiki i nā ʻano loiloi maʻi kanesa holomua o kēia lā ke hōʻemi nui i kou pilikia o ka loaʻa ʻana o ka maʻi kanesa a kōkua iā ʻoe e ʻike koke.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai

ʻAe, i kēia manawa ua ʻoi aku kou maopopo i ka mea a mākou i kamaʻilio ai (MUTYH-Associated Polyposis - MAP). Eia kekahi mau mea nui e hoʻomanaʻo ai:

• He maʻi hoʻoilina ka MAP. Hoʻoulu ia i nā polyp e hana i loko o nā ʻōpū a hoʻonui i ka pilikia o ka maʻi ʻaʻai kolona.
• ʻAʻole ia e hōʻike i nā hōʻailona nui. No laila, inā he moʻolelo ʻohana o ka maʻi kanesa, he mea nui e hana i nā hoʻokolohua genetic ma ke ʻōlelo aʻoaʻo a ke kauka.
• Inā ua ʻike ʻia ʻoe me ka `(MAP), mai hopohopo. Ma ka loaʻa ʻana o nā hoʻokolohua e like me `(Colonoscopy)` a me `(Upper endoscopy)` i ka manawa kūpono, hiki ke pale ʻia a ʻike ʻia paha ke kanesa i ka wā mua.
• He mea nui loa nō hoʻi ke olakino noʻonoʻo. Inā ʻoe e pono ai, mai kānalua e kiʻi i ke kōkua.
• E hoʻomau i ka launa pū me kāu hui lapaʻau a mālama i kou olakino.

Lana ko mākou manaʻo he mea pono kēia ʻike iā ʻoe. Makemake mākou iā ʻoe a me kou ʻohana i ke olakino maikaʻi!

ʻO MUTYH-Associated Polyposis, MAP, polyposis, nā maʻi genetic, ka maʻi ʻaʻai colon, colonoscopy, hoʻāʻo genetic