Manaʻo ʻoe he pōkole kāu kaikamahine ma mua o nā keiki ʻē aʻe? Ke hopohopo nei ʻoe ʻaʻole e loli ana kona kino e like me nā keiki ʻē aʻe o kona mau makahiki, ʻo ia hoʻi ke hoʻomaka nei ʻo ia i ka wā ʻōpiopio ma hope? I kekahi manawa ʻo ke kumu o kēia mau mea he kūlana a mākou i lohe ʻole ai, akā he mea nui loa ia e ʻike. I kēia lā ke kamaʻilio nei mākou e pili ana i kekahi o ia ʻano maʻi, ʻo Turner Syndrome. ʻO ka ʻike ʻana i kēia e kōkua iā ʻoe e hāʻawi i kāu keiki i ka mālama maikaʻi loa.
He aha ka Turner Syndrome?
I ka ʻōlelo maʻalahi, ua hana ʻia ko kākou kino i nā ʻāpana liʻiliʻi. Loaʻa i kēlā me kēia o kēia mau ʻāpana kahi palapala hoʻolālā e hoʻoholo ai i nā mea āpau mai ko kākou ʻano, ke kiʻekiʻe, a me ke kala o ka ʻili. Kāhea mākou i kēia palapala hoʻolālā he mau chromosomes .
ʻO ka maʻamau, he 23 mau pālua o kēia mau chromosome i loko o ke kelepona o ke kaikamahine. ʻO ka pālua 23 o nā chromosome e hoʻoholo ai i ke kāne ʻo 'X' a me 'X' (XX). ʻO ke ʻano kēia he ʻelua mau chromosome X ko ke kaikamahine. Eia nō naʻe, ua nele kekahi kaikamahine me ka maʻi Turner i kekahi o kēia mau chromosome X ʻelua a i ʻole kekahi hapa .
He maʻi hānau kēia e pili wale ana i nā kaikamahine. ʻAʻole like nā keiki a pau me kēia maʻi. Eia nō naʻe, aia ʻelua mau hiʻohiʻona nui i ʻike pinepine ʻia:
1. Kiʻekiʻe pōkole
2. ʻAʻole hana pono nā ovaries
ʻIke pinepine ʻia kēia ʻano i hoʻokahi i loko o 2,000 a i ʻole 2,500 mau pēpē wahine.
He aha ke kumu o kēia kūlana?
ʻO ka mea mua e ʻōlelo ai, ʻaʻole kēia he hewa o ka makuahine a i ʻole ka makuakāne . Hana ʻia ia ma ke ʻano ulia wale nō. ʻO ia hoʻi, i ka wā e hāpai ʻia ai kahi pēpē, aia paha he ʻokoʻa ma ka hua manu mai ka makuahine a i ʻole ka sperm mai ka makuakāne, a i ʻole he loli paha ma ka chromosome X i nā wā mua o ka ulu ʻana o ka pēpē i loko o ka ʻōpū. ʻAʻole maopopo i nā mea noiʻi ke kumu o kēia.
ʻElua ʻano nui o kēia maʻi.
- Monosomy X: ʻO kēia ka nele loa o hoʻokahi chromosome X. ʻO kēia ke ʻano ʻoi aku ka koʻikoʻi a me nā hōʻailona.
- ʻO ka maʻi Mosaic Turner: Ma kēia kūlana, loaʻa i kekahi mau cell i ke kino nā chromosomes X ʻelua, akā hoʻokahi wale nō nā cell ʻē aʻe. Hiki i kēia ke hana i kekahi mau hōʻailona liʻiliʻi. I kekahi manawa, ʻaʻole paha e ʻike ʻia ke kūlana.
He aha nā hōʻailona o kahi keiki me ka Turner syndrome?
Hōʻike kekahi mau keiki i nā hōʻailona i ka wā ʻōpiopio, aʻo kekahi poʻe e ʻike wale i nā hōʻailona i ka wā ʻōpiopio iki. I kekahi manawa he palupalu loa nā hōʻailona. No laila, aia kekahi mau manawa e ʻike ʻia ai ke ʻano ma hope o ka hiki ʻana i ka wā makua. E hoʻokaʻawale kākou i kēia mau hōʻailona i kekahi mau ʻano.
Hiki ke ʻike ma mua o ka hānau ʻana o ke pēpē?
ʻAe, i kekahi manawa hiki i nā hoʻokolohua i hana ʻia i ka wā hāpai ke hāʻawi i kahi hōʻailona e pili ana i kēia.
- Hiki paha i ke kauka ke kānalua i kekahi mea i ka wā o ka nānā ʻana i ka ultrasound: he pilikia me ka puʻuwai o ka pēpē, nā pilikia o ka puʻupaʻa, a i ʻole ka hōʻiliʻili ʻana o ka wai ma hope o ka ʻāʻī.
- Ka hoʻāʻo ʻana i ka genetic: Hiki ke ʻike ʻia kēia ʻano ma o kekahi mau hoʻokolohua genetic i hana ʻia i ka wā hāpai.
Nā hōʻailona e ʻike ʻia i ka wā hānau a i ka wā kamaliʻi paha
ʻAʻole like kēia mau hōʻailona no nā kānaka a pau, akā hiki iā ʻoe ke ʻike i kekahi o lākou.
| ʻAno | He wehewehe wale nō |
|---|---|
| Nā loli i nā pepeiao | Nā mea e like me ke kau ʻia ʻana o nā pepeiao ma lalo o ka maʻamau, ka mānoanoa o nā pepeiao, a pēlā aku. |
| Lauoho ma ke kua o ka ʻāʻī | Hoʻomaka ma lalo o ka awelika. |
| ʻAno o ka ʻāʻī | He ʻāʻī pōkole a ākea. I kekahi manawa ʻike ʻia kahi ʻāʻī pūnaewele. |
| ʻAuwae a me ka umauma | ʻIke ʻia ka ʻāwae lalo he liʻiliʻi a piholo i loko. Piʻi ka laulā o ka umauma a piʻi ka hakahaka ma waena o nā nipples. |
| Nā lima a me nā wāwae | Kūlou iki nā lima ma ke kuʻekuʻe, ʻoi aku ka pōkole o kekahi manamana lima a manamana wāwae paha ma mua o kekahi, nā wāwae pālahalaha. |
| Nā kui | Ka ʻūmiʻi ʻana o nā kui ma nā lima a me nā wāwae. |
Nā hōʻailona i ʻike ʻia i ka wā kamaliʻi, ka wā ʻōpio, a me ka wā makua
ʻO kēia nā ʻano e pono ai nā mākua e makaʻala nui ai.
- Ka hāʻule ʻana o ka ulu ʻana: ʻAʻole e ulu kiʻekiʻe no ka makahiki. ʻIke pinepine ʻia kēia ma kahi o 5 mau makahiki.
- ʻAʻohe ulu wikiwiki: ʻO ka maʻamau, loaʻa i nā keiki nā wā o ka piʻi koke ʻana o ke kiʻekiʻe i ko lākou ulu ʻana. ʻAʻole loaʻa i kēia mau keiki kēlā mau wā.
- Ka lohi a ʻaʻole paha o ka wā ʻōpiopio: ʻO kēia kekahi o nā hōʻailona nui. Hiki ke loaʻa nā mea e like me ka ulu ʻana o ka umauma a me ka menstruation.
- Nā pae hormone haʻahaʻa: Nā pae haʻahaʻa o nā hormones wahine e like me ka estrogen.
- Ka Lapaʻau ʻOvarian Mua: He liʻiliʻi loa nā ovaries. Hiki iā lākou ke oki i ka hana ma hope o kekahi mau makahiki, a i ʻole hiki iā lākou ke hana ʻole mai ka hānau ʻana.
- ʻAʻole hānau keiki: No ka mea ʻaʻole hana nā ovaries, ʻaʻole hiki ke loaʻa nā keiki ma ke ʻano kūlohelohe.
E hoʻomanaʻo, ʻaʻole e loaʻa i nā keiki āpau kēia mau hōʻailona āpau. Loaʻa paha i kekahi mau keiki he nui, aʻo kekahi he kakaikahi wale nō. No laila, inā he mau hopohopo kāu e pili ana i kāu keiki, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me ke kauka .
He aha nā pilikia olakino ʻē aʻe e hiki ke hele mai me kēia maʻi?
ʻOi aku ka nui o ka pilikia o nā keiki me ka Turner syndrome i ka hoʻomohala ʻana i kekahi mau pilikia olakino ʻē aʻe, no laila he mea nui loa ka hana ʻana i nā hoʻokolohua lapaʻau maʻamau a e makaʻala e pili ana i kēia.
| ʻŌnaehana pilikia | Nā kūlana olakino hiki ke loaʻa |
|---|---|
| Puʻuwai a me nā kīʻaha koko | Hiki ke loaʻa nā maʻi puʻuwai hānau, ʻoiai nā pilikia me ke kīʻaha koko nui (aorta) e lawe ana i ke koko i ke kino. |
| ʻŌnaehana iwi | ʻO nā kūlana e like me ka osteoporosis, ka haki maʻalahi o ka iwi, a me ka scoliosis. |
| ʻŌnaehana pale kino | Hiki ke loaʻa nā maʻi autoimmune ke hoʻouka ka ʻōnaehana pale ponoʻī o ke kino iā ia iho. Nā laʻana: Maʻi Celiac, maʻi Hashimoto (kahi pilikia me ka thyroid gland). |
| Nā pepeiao a me nā maka | Nālowale o ka lohe, nā maʻi pepeiao waena pinepine, ka ʻike pohihihi a me nā maka keʻa. |
| nā puʻupaʻa | Aia paha kekahi mau pilikia me nā puʻupaʻa, hiki ke alakaʻi i nā maʻi ʻōnaehana mimi pinepine (UTIs). |
| Ka hiki ke aʻo | ʻOiai maikaʻi ka naʻauao ma ke ʻano laulā, hiki ke loaʻa kekahi mau pilikia i ke aʻo ʻana. ʻOi aku ka paʻakikī o nā mea e like me ka hoʻomanaʻo a me ka hoʻomaopopo ʻana i nā pilina ākea (e like me ka hoʻokele kaʻa). |
| Ola kino noʻonoʻo | ʻO ka noho ʻana me kēia maʻi hiki ke alakaʻi i nā pilikia noʻonoʻo e like me ka haʻahaʻa o ka manaʻo ponoʻī, ka hopohopo, a me ke kaumaha. |
Pehea e ʻike ai ke kauka i kēia?
Hiki ke ʻike ʻia ka maʻi Turner ma mua a ma hope paha o ka hānau ʻana.
- Ma mua o ka hānau ʻana:
- NIPT (Noninvasive prenatal testing): He hoʻāʻo e nānā ana i nā pilikia genetic i loko o ka pēpē ma ka nānā ʻana i ke koko o ka makuahine i ka wā hāpai.
- Scan: E like me ka mea i ʻōlelo ʻia ma mua, hiki ke kū mai ka kānalua ma muli o nā hiʻohiʻona i ʻike ʻia ma ka scan.
- ʻO Amniocentesis a me CVS: He mau hoʻokolohua hōʻoia kēia. Pili lākou i ka lawe ʻana i kahi hāpana o ka wai amniotic a i ʻole kahi ʻāpana o ka placenta a hana i kahi hoʻokolohua genetic. He 100% pololei kēia mau hoʻokolohua.
- Ma hope o ka hānau ʻana:
- Hoʻāʻo Karyotyping: ʻO kēia ka hoʻāʻo koʻikoʻi loa. He hoʻāʻo genetic e pili ana i ka lawe ʻana i kahi koko liʻiliʻi. Hiki i kēia ke hoʻoholo pololei inā ua nalowale kahi chromosome X.
He aha nā lāʻau lapaʻau no kēia?
ʻAʻole hiki ke ho'ōla loa ʻia ka maʻi Turner syndrome. Eia naʻe,Nui nā lāʻau lapaʻau maikaʻi e hiki ke kaohi i nā hōʻailona a kōkua i ke keiki e ola i kahi ola maʻamau.
ʻO ka mea nui, ʻo ka lāʻau lapaʻau he hormonal.
- ʻO ka lāʻau lapaʻau hormone ulu kanaka: He mau inikini kēia i kēlā me kēia lā. Hiki i kēia ke kōkua nui i ka hoʻonui ʻana i ke kiʻekiʻe o ke keiki. Inā hoʻomaka ʻia i ka wā ʻōpiopio, hiki iā ia ke hoʻonui i ke kiʻekiʻe hope loa o ke keiki ma kekahi mau ʻīniha wale nō.
- Lapaʻau Estrogen: He mea nui kēia no nā keiki he nui me ka maʻi Turner e hiki ai i ka wā ʻōpio. Kōkua ia i ka ulu ʻana o ka umauma a me nā pōʻaiapuni menstrual. Kōkua pū ia i ka hoʻoikaika ʻana i nā iwi a hoʻomaikaʻi i ke olakino o ka puʻuwai. Hoʻomau pinepine kēia lāʻau a hiki i ka menopause.
- Lapaʻau Progestin: Hoʻomaka ʻia kēia i kekahi mau makahiki ma hope o ka hoʻomaka ʻana o ka estrogen. Kōkua kēia i ka mālama ʻana i kahi pōʻaiapuni menstrual kūlohelohe.
Ma waho aʻe o kēia mau lāʻau lapaʻau, inā loaʻa iā ʻoe kekahi o nā pilikia olakino i ʻōlelo ʻia ma mua (puʻuwai, nā puʻupaʻa), pono ʻoe e ʻimi i ka lāʻau lapaʻau mai kahi loea.
Pehea lā wau e mālama ai i kaʻu keiki?
ʻO ka mea nui loa, ʻo ia ka ʻike ʻana i ka maʻi a hoʻomaka i ka lāʻau lapaʻau i ka wā mua.
E makaʻala i ka ulu ʻana o kāu kaikamahine a me kāna mau hanana koʻikoʻi. Inā manaʻo ʻoe ʻaʻole ʻo ia e ulu wikiwiki e like me kou makemake, a inā paha e hōʻike ana ʻo ia i kekahi mau hōʻailona kino ʻē, e kamaʻilio koke me kāu kauka ʻohana .
ʻO ka wikiwiki o ka hoʻomaka ʻana o nā mea e like me ka lāʻau lapaʻau hormone, ʻoi aku ka maikaʻi o nā hopena. Eia kekahi, pono kēia mau keiki e hana i nā nānā lapaʻau maʻamau.
Eia kekahi, ʻōlelo nā kauka:
- Ka nānā ʻana i nā pilikia aʻo: Ke ʻike ʻia kēia mau mea i ka wā ʻōpiopio, hiki ke kūkākūkā ʻia nā kumu a hiki ke hoʻolauna ʻia nā ʻano aʻo i nā pono o ke keiki.
- Ke ʻimi nei i ke kōkua mai kahi kākāʻōlelo olakino noʻonoʻo : He mea nui loa ka ʻimi ʻana i ke kōkua mai kahi mea e like me ke kauka noʻonoʻo keiki. Hiki i kēia ke hāʻawi i ka ikaika nui e hoʻoponopono ai i nā pilikia e like me nā pilikia pili kaiaulu, ka manaʻo haʻahaʻa iā ʻoe iho, ka hopohopo, a me ke kaumaha.
ʻOi aku ka pōkole o ke ola o ke keiki me kēia maʻi ma mua o ke kanaka maʻamau. Eia nō naʻe, me ka mālama pono ʻana a me ka hoʻāʻo ʻana, hiki i nā mea he nui ke ola i kahi ola maʻamau a piha .
Leka Lawe-Home
- ʻO ka Turner Syndrome kahi maʻi genetic e kū wale ana i nā kaikamahine.
- ʻAʻole kēia he hewa o kekahi, he loli hoʻoilina wale nō ia.
- ʻO nā hōʻailona nui ka nalowale o ke kiʻekiʻe a me ka hāʻule ʻana o ka ovarian, hiki ke alakaʻi i ka lohi o ka wā ʻōpiopio.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia, hiki i ka lāʻau lapaʻau hormone a me nā lāʻau ʻē aʻe ke kōkua i ka hoʻokele ʻana i nā hōʻailona a alakaʻi i kahi ola maʻamau a olakino.
- Inā he mau hopohopo kāu e pili ana i ka ulu ʻana o kāu keiki a i ʻole nā hōʻailona ʻē aʻe, e nīnau koke i kāu kauka . He mea nui loa ka ʻike mua ʻana no ka mālama pono ʻana.
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