Ke manaʻo nei ʻoe i kekahi manawa ua ʻoi aku ke kiʻekiʻe o kāu kaikamahine ma mua o nā keiki ʻē aʻe o kona mau makahiki? A i ʻole ke ʻano nei ua emi iki ʻo ia i ka hana kula, a i ʻole he pilikia paha kona hoʻolohe ʻana? I kekahi manawa, aia paha kahi maʻi genetic ma hope o kēia ʻaʻole mākou e kamaʻilio nui nei, akā he mea nui loa ia e makaʻala. ʻO ia ke ʻano o ka Triple X Syndrome. Mai makaʻu i kou lohe ʻana i kēia inoa. ʻAʻole ia he maʻi koʻikoʻi. I kēia lā, e kamaʻilio mākou e pili ana i nā mea āpau ma ke ʻano maʻalahi loa hiki iā ʻoe ke hoʻomaopopo.
I ka pōkole, he aha ka Triple X Syndrome?
I mea e hoʻomaopopo ai i kēia, pono mua kākou e ʻike iki e pili ana i nā chromosomes i loko o ko kākou kino. E noʻonoʻo i ko kākou kino e like me kahi puke kuhikuhi nui. ʻO kā kākou ʻike a pau, e like me ko kākou kiʻekiʻe, ke kala o ka ʻili, ke kala o nā maka, a me ke ʻano o ka lauoho, ua kākau ʻia ma kēia puke. ʻO nā chromosomes nā mokuna ma kēia puke.
ʻO ka maʻamau, aia i loko o kēlā me kēia cell i loko o ke kino kanaka olakino he 23 mau pālua o kēia mau chromosomes, a i ʻole 46 mau chromosomes. Hoʻokahi pālua o kēia mau mea e hoʻoholo ai i ko kākou wahine.
- ʻElua mau chromosomes X a nā wāhine . Kāhea mākou i kēlā (XX) .
- Hoʻokahi chromosome X a hoʻokahi chromosome Y ko nā kāne . Kāhea mākou iā ia (XY) .
I kēia manawa, ua maopopo iā ʻoe? ʻAe. ʻO ka maʻi Triple X kahi maʻi e pili wale ana i nā wahine. Loaʻa i ka wahine me kēia maʻi kahi chromosome X keu i loko o kāna mau cell āpau, a i ʻole i loko o kekahi o kāna mau cell, me nā chromosome X ʻelua i loaʻa maʻamau (XX). ʻO ke ʻano kēia ua hoʻonohonoho ʻia kā lākou mau chromosome wahine e like me (XXX) . ʻO ia ke kumu i kapa ʻia ai ʻo 'triple X'.
I kekahi manawa, loaʻa paha kēia chromosome X keu i loko o kekahi mau pūnaewele wale nō, ʻaʻole i loko o lākou āpau. I ka lāʻau lapaʻau, kapa mākou i kēia he kūlana mosaic.
Pehea ka maʻamau o kēia ʻano?
He maʻi laha ʻole kēia. Ua ʻike ʻia e ka noiʻi e pili ana ia i hoʻokahi i loko o 900 a 1,000 mau kaikamahine hānau hou.
Akā, ʻo ka mea nui ma ʻaneʻi, ʻaʻole hōʻike ka nui o ka poʻe me kēia maʻi i kekahi mau hōʻailona. Noho lākou i ke ola maʻamau a olakino. No laila, ʻaʻole lākou i ʻike he loaʻa iā lākou kēia loli genetic. No kēia kumu, manaʻoʻiʻo nā kauka he ʻoi aku ka nui o ka poʻe me kēia maʻi.
He aha nā hōʻailona o ka Triple X syndrome?
He mea kēia a nā mākua he nui e makemake ai e ʻike. E hoʻomanaʻo, ʻokoʻa loa nā hōʻailona mai kēlā kanaka a kēia kanaka i kēia maʻi. ʻAʻole paha kekahi e manaʻo iki. Hiki i kekahi ke hōʻike i nā hōʻailona iki o kekahi a ʻoi aku paha o kēia mau mea:
E māhele kākou i kēia mau hiʻohiʻona i mau ʻāpana no ka maʻalahi o ka hoʻomaopopo ʻana.
| ʻAno hiʻohiʻona | Nā mea hiki ke hōʻike ʻia |
|---|---|
| Nā ʻano kino |
|
| Nā ʻano e pili ana i ka lolo a me ka ʻōnaehana nerve | |
| Nā kūlana olakino ʻē aʻe (kākaʻikahi) |
ʻO ka mea nui, ʻoiai inā loaʻa iā ʻoe kekahi a ʻelua paha o kēia mau hōʻailona, ʻaʻole hiki iā ʻoe ke hoʻoholo he triple X syndrome kou. Hiki ke hana ʻia e nā mea ʻē aʻe he nui. No laila, inā he kānalua kāu, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka.
He aha ke kumu o kēia? He mea anei kēia i hoʻoili ʻia mai nā hanauna mai?
He pilikia kēia i loaʻa i nā poʻe he nui. He maʻi hoʻoilina ka Triple X syndrome, akā ʻaʻole ia i hoʻoilina pinepine ʻia mai nā mākua mai. Loaʻa ia ma kahi o ka hanana wale nō.
I ka ʻōlelo maʻalahi, ke hana ʻia kahi pēpē mai ka hua manu o ka makuahine a me ka hua manu o ka makuakāne, loaʻa kahi hewa liʻiliʻi i nā chromosomes i ka wā o ka māhele ʻana o kēlā mau cell. ʻO kēia hewa ka hopena o ka hoʻohui ʻana o kahi chromosome X keu. ʻAʻole kēia ma muli o ka hewa o kekahi.
Ua ʻike ʻia e ka noiʻi ʻana e piʻi iki paha ka pilikia o kēia maʻi inā ʻoi aku ka nui o ka makuahine ma mua o 35 mau makahiki i ka wā o ka hāpai ʻana. Eia naʻe, ʻaʻole kēia manaʻo he pilikia ko nā kānaka a pau ma luna o 35.
Pehea e ʻike ʻia ai ka Triple X syndrome?
E like me ka mea i ʻōlelo ʻia ma mua, ʻoiai ʻaʻohe hōʻailona o ka nui o ka poʻe, ʻaʻole i ʻike ʻia kēia maʻi. Eia nō naʻe, inā manaʻo kekahi kauka he lohi ka ulu ʻana o ke keiki a i ʻole nā pilikia aʻo, hiki iā lākou ke kuhikuhi iā lākou no ka hoʻāʻo ʻana i ka genetic.
- Hoʻāʻo ʻana i ka hoʻoilina: ʻO ka hoʻāʻo nui i hoʻohana ʻia no kēia he hoʻāʻo koko i kapa ʻia he karyotype . Hiki iā ʻoe ke ʻike maopopo i ka helu a me ke ʻano o nā chromosomes i loko o nā hunaola koko.
- Nā hoʻāʻo hāpai: I kekahi manawa, hiki i nā hoʻāʻo i hana ʻia no nā kumu ʻē aʻe i ka wā hāpai (e like me NIPT, Amniocentesis, CVS) ke hāʻawi i kahi kuhi e pili ana i kēia kūlana. Eia nō naʻe, inā ʻike ʻoe i kekahi mea e like me ia, he mea nui loa ia e hoʻāʻo hou ʻia ma hope o ka hānau ʻana o ka pēpē e hōʻoia iā ia.
- Nā hihia ʻē aʻe: E ʻike paha kekahi mau wahine he maʻi ko lākou ma o nā hoʻokolohua ke ʻimi lākou i ka mālama ʻana no nā pilikia hānau keiki.
He aha nā lāʻau lapaʻau no kēia?
Ke lohe au i kēia, ʻo ka mea mua e hiki mai ana i ka noʻonoʻo, "Hiki ke ho'ōla ʻia kēia?"
ʻAʻole he maʻi ka Triple X syndrome, he maʻi hoʻoilina ia. No laila, ʻaʻohe 'lāʻau lapaʻau' a 'lāʻau lapaʻau' paha no ia mea. Eia nō naʻe, aia nā ala kūpono loa e hoʻokele ai i kekahi o nā pilikia a i ʻole nā hōʻailona e kū mai ana mai kēia ʻano.
He mea nui ka ʻike mua ʻana. Inā ʻike mua ʻia ke keiki me kēia maʻi, hiki iā lākou ke loaʻa ke kākoʻo a me ka lāʻau e pono ai lākou i ka wā koke.
ʻO ka maʻamau, hiki i ke kauka ke kuhikuhi i nā mea e like me:
- Renal Ultrasound: No ka nānā ʻana i nā ʻano ʻē i loko o nā puʻupaʻa.
- ʻŌlelo aʻoaʻo a ke kauka puʻuwai: E nānā i ka hana o ka puʻuwai.
- Hoʻōla Kino: Inā he nāwaliwali o nā ʻiʻo, e hoʻoikaika iā lākou a hoʻomaikaʻi i ka hoʻonohonoho ʻana o ka neʻe ʻana.
- Hoʻōla Hana:E hoʻomohala i nā mākau e pono ai e hana maʻalahi i nā hana o kēlā me kēia lā (e like me ke kāhiko ʻana, ke kākau ʻana, a pēlā aku).
- Lapaʻau ʻŌlelo: Kōkua me nā lohi o ka ʻōlelo a i ʻole nā pilikia ʻōlelo.
- Kākoʻo hoʻonaʻauao: Ke hāʻawi nei i ka nānā kūikawā a me ke kākoʻo ma ke kula i nā keiki me nā pilikia aʻo.
- ʻŌlelo aʻoaʻo noʻonoʻo: Inā he mau pilikia e like me ka hopohopo a i ʻole ka nele o ka hilinaʻi iā ʻoe iho, e kōkua iā lākou e hoʻoponopono iā lākou.
- ʻŌlelo aʻoaʻo loea no ka hānau keiki: E kiʻi i ka ʻōlelo aʻoaʻo āu e pono ai i ka hoʻolālā ʻana i kahi ʻohana i ka wā e hiki mai ana.
Pehea ke ʻano o ke ola me kēia maʻi? Ke hoʻopilikia nei anei ia i ke ola o ke ola?
ʻO kēia ka mea maikaʻi loa e ʻike ai. ʻO ka hapa nui o ka poʻe me ka triple X syndrome e ola maʻamau, olakino, a hauʻoli hoʻi. Hele lākou i ke kula, loaʻa ka hoʻonaʻauao kiʻekiʻe, loaʻa nā hana, mare, a loaʻa nā keiki.
ʻAʻole kēia maʻi e hoʻopilikia i ke ola o ke kanaka ma kekahi ʻano. Noho mau lākou e like me nā wāhine ʻē aʻe. ʻO ka mea wale nō e pono ai, ʻo ia ke komo mua a hāʻawi i ke kākoʻo e pono ai inā he ʻeha.
Ma ke ʻano he makua, he mea maʻamau ka makaʻu a me ka hopohopo ke ʻike ʻoe ua loaʻa i kāu keiki kēia maʻi. Hiki nō hoʻi ke lilo i mea hōʻoluʻolu ke loaʻa ke kumu o kahi pilikia i hoʻopilikia iā ʻoe no ka manawa lōʻihi, e like me, "ʻĀ... ʻo ia ke kumu o kona ʻano." He mea maʻamau kēia mau manaʻo a pau. ʻO ka mea nui, ʻo ia ka ʻike ʻaʻole ʻoe hoʻokahi. E kamaʻilio ākea e pili ana i kēia me kāu kauka. Hiki iā ia ke hāʻawi iā ʻoe i ka ʻike e pili ana i nā hui kākoʻo a me nā kumuwaiwai ʻē aʻe e hiki ke kōkua iā ʻoe.
Leka Lawe-Home
- He maʻi hoʻoilina ka Triple X Syndrome e pili wale ana i nā wahine a ua hoʻokumu ʻia e kahi chromosome X keu. ʻAʻole ia he maʻi.
- ʻAʻole kēia he mea i hoʻoilina pinepine ʻia mai nā mākua mai, akā, he loli genetic e kū mai ana ma kahi hanana.
- ʻOiai ʻo ka hapa nui o ka poʻe me kēia maʻi ʻaʻohe hōʻailona, hiki i kekahi ke hōʻike i nā hōʻailona e like me ka piʻi ʻana o ke kiʻekiʻe a me nā pilikia aʻo.
- ʻOiai ʻaʻohe "lāʻau lapaʻau" no kēia, hiki ke hoʻokele ʻia nā pilikia e kū mai ana. He mea nui loa ka ʻike mua ʻana a me ka hāʻawi ʻana i ke kākoʻo e pono ai.
- He nui ka poʻe me kēia maʻi e ola olakino ana, maʻamau, a piha hoʻi. Inā he hopohopo kou a kāu keiki paha e pili ana i kēia, mai makaʻu e kamaʻilio me kāu kauka.











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