Ua ʻike anei ʻoe he ʻoi aku ka lōʻihi a me ka lahilahi o nā manamana lima o kekahi poʻe ma mua o ka maʻamau? E like me nā wāwae o ka nananana. Malia paha pēlā kou mau manamana lima ponoʻī. I ka lāʻau lapaʻau, kapa mākou i kēia ʻano he Arachnodactyly. Mai makaʻu ke lohe ʻoe i kēia inoa. ʻO ka hapa nui o ka manawa, ʻaʻole kēia he maʻi, akā he ʻano kino wale nō e loaʻa mai ana mai ka hoʻoilina. Eia naʻe, i nā hihia kakaikahi loa, hiki i kēia ke lilo i hōʻailona o kahi maʻi ʻē aʻe i loko o ko mākou kino. No laila i kēia lā, e kamaʻilio maʻalahi kākou e pili ana i kēia.
He aha ka Arachnodactyly?
I ka ʻōlelo maʻalahi, ʻo arachnodactyly ka huaʻōlelo a nā kauka e hoʻohana ai no "nā manamana wāwae spider." ʻO ia hoʻi, nā manamana lima lōʻihi a lahilahi e like me nā wāwae o ka spider.
ʻO kēia mau loli i ke ʻano o ko kākou mau lima i kekahi manawa he hōʻailona ia o nā maʻi hoʻoilina. Akā, ʻaʻole ia ka hihia mau. He mea hiki loa ke loaʻa iā ʻoe nā manamana lima lōʻihi a lahilahi, me ka ʻole o kekahi maʻi kumu. Me he mea lā ua hoʻoilina kekahi poʻe i ka lauoho lōʻihi a me nā maka polū.
No ke aha e lōʻihi ai nā manamana lima? He aha nā kumu?
Hoʻoholo ʻia ko mākou kala lauoho, ke kala ʻili, ke kiʻekiʻe, a me ka lōʻihi a me ka laulā o ko mākou mau manamana lima e nā genes a mākou e hoʻoilina ai mai ko mākou mau mākua mai. I ka hapanui o nā hihia, ʻo kēia mau ʻano kino he hopena wale nō ia o kēlā hoʻoilina genetic.
Eia nō naʻe, he mea kākaʻikahi loa, hiki i kahi ʻokoʻa o kēia mau genes ke hoʻololi nui i ke ʻano o ka ulu ʻana o ko mākou kino. I kekahi manawa hiki i ka Arachnodactyly ke hopena o ia ʻano ʻokoʻa genetic.
ʻO ka hapa nui o nā maʻi hoʻoilina e hiki ai ke hoʻoulu i nā 'manamana kolo' ma kēia ʻano, no ka māhele o nā maʻi pili .
He aha kēia ʻiʻo hoʻohui?
E noʻonoʻo i ko kākou kino e like me kahi hale i hana ʻia me nā piliki. Hoʻopaʻa ʻia kēia mau piliki (ʻo ia hoʻi, ko kākou mau ʻōpū a me nā ʻiʻo) e ka sima, ka mea e hāʻawi ai i ka ikaika a me ke ʻano o ke kūkulu ʻana. Pēlā nō, ʻo ke ʻano o ka ʻiʻo e hoʻopili ai i nā ʻāpana like ʻole o ko kākou kino, e hāʻawi ana iā lākou i ke kākoʻo a me ke ʻano, ʻo ia ka mea a kākou e kapa nei he ʻiʻo hoʻohui . No ka laʻana, no kēia hui ko kākou mau iwi, ʻili, cartilage, tendons, a me nā ligaments.
No laila, ke loaʻa iā ʻoe kēia maʻi pili o nā ʻiʻo, ʻaʻole e ulu pono kēia ʻiʻo. Hiki iā ia ke hoʻopilikia ʻaʻole wale i ko mākou ʻano, akā pehea hoʻi ka hana ʻana o kēia ʻiʻo.
He aha nā maʻi e hiki ke pili pū me kēia ʻano?
Aia kekahi mau maʻi pili nui e hōʻike ʻia me ka hōʻailona 'nā manamana lima spider'. He mea nui e makaʻala i kēia mau mea, no ka mea inā loaʻa iā ʻoe nā hōʻailona ʻē aʻe me Arachnodactyly, he mea naʻauao ke ʻike i ke kauka no ka ʻōlelo aʻo.
| Ka maʻi hoʻoilina | Nā Hiʻohiʻona Koʻikoʻi |
|---|---|
| ʻO ka maʻi Marfan | Kino kiʻekiʻe loa a wiwi. Nā lima, nā wāwae, a me nā manamana lima lōʻihi loa. Nā hono palupalu loa. Hiki ke loaʻa ka scoliosis, nā ʻano ʻē o ka umauma (pectus carinatum a i ʻole pectus excavatum), nā pilikia ʻike, a me nā maʻi puʻuwai. |
| ʻO ka maʻi Beals | He lōʻihi a lahilahi nā lālā a me nā manamana lima i ka wā hānau. ʻAʻole maikaʻi ka ulu ʻana o nā ʻiʻo. He ʻoʻoleʻa kekahi mau hono i ka wā hānau (nā ʻūmiʻi hui). |
| ʻO ka maʻi ʻo Ehlers-Danlos | Lilo nā hono i mea palupalu a maʻalahi ke ʻāwili. He ʻōniʻoniʻo loa ka ʻili a maʻalahi hoʻi ka palapū a me ka haehae. Hiki nō hoʻi ke ʻeha nā hono a me nā ʻiʻo. Hiki ke ʻike ʻia ka Arachnodactyly i kekahi mau ʻano holoholona. |
| ʻO ka Homocystinuria | Nā lālā lōʻihi a me nā manamana lima. ʻAʻole hiki ke piʻi pono ke kaumaha i nā keiki ʻōpio. Nā pilikia ʻike (cataracts), nā kuli kuʻi, a me nā ʻano ʻē o ka umauma. |
| ʻO ka maʻi Loeys-Dietz | Hoʻopilikia ia i ka puʻuwai a me ka ʻōnaehana kahe koko, a me ka ʻōnaehana iwi. ʻO nā ʻano ʻē o ka umauma, nā kīnā o ke kuamoʻo, a i ʻole ka arachnodactyly paha he mau hōʻailona. |
| ʻO ka maʻi Shprintzen-Goldberg | Hoʻopilikia nui ia i ke ʻano o ka ulu ʻana o ke poʻo. Hiki ke loaʻa nā ʻano ʻē o ka helehelena a i ʻole nā pilikia me ka neʻe ʻana o ka maka. Hiki iā ia ke hoʻopilikia i ka ʻōnaehana iwi a me nā manamana lima. |
Pehea e mālama ai ke kauka i kēia?
ʻO ka mea mua e hoʻomanaʻo ai, ʻaʻole ʻo Arachnodactyly kahi maʻi e pono ai ka mālama ʻana. ʻO ka loaʻa ʻana o nā manamana lima lōʻihi a kolo wale nō ʻaʻole ia e hoʻopilikia iā ʻoe.
Eia nō naʻe, inā ʻike ke kauka ua like kou ʻano a i ʻole nā manamana lima o kāu keiki me kēia, makemake paha ʻo ia e nānā i nā hōʻailona ʻē aʻe o nā kūlana genetic i ʻōlelo ʻia ma luna, no ka mea, ʻo kēia mau kūlana he mau hōʻailona ʻē aʻe i ʻike ʻia.
E nīnau paha kāu kauka iā ʻoe i kēia mau mea:
- I ka manawa hea ʻoe i ʻike mua ai i ke ʻano o kēia mau manamana lima?
- Aia kekahi o kou ʻohana i loaʻa i ka maʻi pili i nā ʻiʻo (e like me Marfan syndrome)?
- Loaʻa iā ʻoe nā hōʻailona ʻē aʻe e like me ka ʻeha o nā hono, ka paʻakikī o ka hanu ʻana, a i ʻole nā pilikia ʻike?
Inā kānalua ʻia kahi maʻi genetic, hiki i ke kauka ke kuhikuhi i nā hoʻāʻo genetic e hōʻoia iā ia.
ʻO ka mea nui, ʻaʻole hiki ke ho'ōla loa ʻia ka nui o kēia mau maʻi hoʻoilina. Eia nō naʻe, aia nā lāʻau lapaʻau kūpono loa i loaʻa i kēia lā e kāohi i ko lākou hopena a alakaʻi i nā ola olakino a maʻamau. No laila, he mea nui loa ka ʻike mua ʻana i ka maʻi a hoʻomaka i ka lāʻau.
He aha kaʻu e hana ai inā manaʻo wau he Arachnodactyly koʻu?
No ka mea, he lōʻihi a lahilahi kou mau manamana lima, e noʻonoʻo paha ʻoe, 'Loaʻa iaʻu kēia pū kekahi? He maʻi anei kēia?' Inā he kānalua a makaʻu paha kāu, ʻo ka mea maikaʻi loa e hana ai, ʻo ia ke ʻike i kāu kauka ʻohana a kamaʻilio e pili ana.
ʻO ka maʻamau, inā loaʻa iā ʻoe a i ʻole kāu keiki kahi maʻi pili, e ʻike ʻoe i nā hōʻailona ʻē aʻe ma waho aʻe o ka ulu ʻana o nā manamana lima. I kekahi manawa hiki ke maʻalahi loa kēia mau hōʻailona, a i ʻole e lōʻihi paha ka manawa e ʻike ʻia ai i ka wā kamaliʻi. Inā ʻike ʻoe i kekahi mau loli i kou kino a i ʻole ke kino o kāu keiki, ʻoi aku hoʻi i ka ʻōnaehana iwi, mai kānalua e kamaʻilio me ke kauka e pili ana i ia mea.
Leka Lawe-Home
- ʻO Arachnodactyly, a i ʻole 'nā manamana lima spider,' e pili ana i nā manamana lima lōʻihi a lahilahi.
- ʻO ka hapa pinepine, he ʻano kino hoʻoilina maʻamau wale nō kēia, me ka ʻole o ka maʻi.
- I ka manawa pinepine ʻole, hiki ke lilo i hōʻailona o kahi maʻi genetic e pili ana i nā ʻiʻo pili, e like me Marfan syndrome.
- Inā he mau manamana lima lōʻihi kou, kūlou nui ʻana o nā hono, pilikia ʻike maka, nā ʻano ʻē o ke kua a i ʻole ka umauma, a i ʻole he mōʻaukala ʻohana o ia mau kūlana, he mea nui loa ia e ʻimi i ke kōkua lapaʻau.
- ʻAʻole pono ka lāʻau lapaʻau no nā manamana wāwae ʻē aʻe. Kuhikuhi ʻia ka lāʻau lapaʻau i ke kūlana kumu paha e hoʻoulu ai.
- Mai hopohopo nui ma ka nānā ʻana iā ʻoe iho ma ka pūnaewele. No kekahi pilikia olakino, ʻoi aku ka maikaʻi a me ka palekana e ʻimi i ka ʻōlelo aʻo a kāu kauka.
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