Ua ʻike anei ʻoe ua lilo ka ʻāpana keʻokeʻo o nā maka o kekahi poʻe, ʻo ia hoʻi, ka sclera keʻokeʻo, i polū iki? Ua ʻike paha ʻoe i kēia loli i kou mau maka ponoʻī. He mea maʻamau kēia i nā pēpē ʻōpio. No laila, i ka lāʻau lapaʻau, ke lilo ka ʻāpana keʻokeʻo o ka maka i kala polū, hina a poni paha, kapa mākou ia he 'Blue Sclera'. ʻO ka hapa nui o ka manawa, ʻaʻohe mea e hopohopo ai. Eia naʻe, i kekahi manawa hiki i kēia ke lilo i hōʻailona o kekahi maʻi olakino ʻē aʻe i loko o ko mākou kino. No laila i kēia lā, e kamaʻilio kākou e pili ana i nā mea āpau ma ke ʻano maʻalahi.
He aha maoli ke ʻano o ka 'Blue Sclera'?
I ka ʻōlelo maʻalahi, ʻo ka ʻāpana keʻokeʻo o ko kākou maka ua kapa ʻia ʻo ka sclera. He uhi mānoanoa ia i hana ʻia me nā olonā pili ikaika. ʻO kāna hana nui ka pale ʻana i ka maka a mālama i kona ʻano.
E noʻonoʻo, he aha ka mea e hana ʻia inā e lahilahi iki kēia paia keʻokeʻo i kapa ʻia ʻo ka sclera no kekahi kumu? I kēlā manawa, ʻike ʻia ka ʻiʻo ʻeleʻele (uvea) a me ke kala o nā kīʻaha koko ma lalo o ia mea ma o kēia paia keʻokeʻo lahilahi. Ua like ia me ke kau ʻana i kahi mea uliuli ma lalo o kahi lole keʻokeʻo lahilahi, hiki iā ʻoe ke ʻike i ke kala uliuli ma luna. ʻO ia ke kumu i kapa ʻia ai mākou he Blue Sclera . ʻO ka maʻamau, ʻaʻole kēia kūlana e hoʻoulu i ka ʻeha o ka maka a i ʻole nā hōʻailona ʻē aʻe.
He kūlana koʻikoʻi anei kēia i nā manawa a pau?
ʻAʻole, ʻaʻole i ka hapa nui o ka manawa. ʻO ke koʻikoʻi o kēia ma muli o ke kumu o nā maka polū.
- Nā pēpē ʻōpiopio: ʻOi aku ka lahilahi o ka sclera o nā pēpē hānau hou a me nā pēpē ʻōpio. No laila, he mea maʻamau ke ʻano uliuli iki o nā keʻokeʻo o ko lākou mau maka. I ka ulu ʻana o ke pēpē, mānoanoa kēia sclera, a nalowale ke kala polū.
- Nā Pākeke: Hiki ke kū mai kēia ʻano ma muli o nā kumu maʻalahi e like me ka nele o ka hao i kekahi mau pākeke.
Akā e hoʻomanaʻo, i kekahi manawa hiki i kēia ke lilo i hōʻailona o kahi maʻi koʻikoʻi. No laila, inā ʻike ʻoe i kekahi mau loli i kou mau maka a i ʻole nā maka o kāu keiki, ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka me ka nānā ʻole ʻana. E hana paha kāu kauka i kahi hoʻokolokolo maka, nā hoʻokolohua koko, a i ʻole ka hoʻāʻo genetic e hoʻoholo ai i ke kumu pololei.
He aha nā kumu nui o nā maka polū?
Hiki ke hoʻokaʻawale ʻia nā kumu o ka Blue Sclera i kekahi mau ʻano. E nānā kākou iā lākou ma kahi papa, i maʻalahi ke hoʻomaopopo.
| Māhele Kumu | Nā Laʻana a me nā Kikoʻī |
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| Nā Kūlana Hoʻoilina | He mau maʻi hānau kēia e hiki ke hoʻoili ʻia i nā hanauna.
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| Nā Maʻi a me nā Kūlana ʻē aʻe |
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| Nā lāʻau lapaʻau a me nā kumu waho ʻē aʻe |
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He aha nā lāʻau lapaʻau no kēia?
He mea nui loa ia e hoʻomaopopo i kēia. ʻAʻole he maʻi ka Blue Sclera, akā he hōʻailona. No laila, ʻaʻole mālama nā kauka i ke kala polū o nā maka, akā , ʻo ka maʻi kumu i hoʻokumu ai i nā maka polū.
- Inā kānalua ʻoe i ka nele o ka hao , e ʻōlelo paha kāu kauka i nā mea hoʻohui hao a i ʻole nā meaʻai waiwai i ka hao. Ke hoʻi hou kāu mau pae hao i ka maʻamau, e nalo mālie paha ka uliuli o kou mau maka.
- Nā kumu o ka Osteogenesis ImperfectaInā he maʻi hoʻoilina ia, e like me Alzheimer's, ke kālele nei ka lāʻau lapaʻau i ka hoʻokele ʻana i ka maʻi. Pono paha kēia i ke kōkua o kahi hui o nā kauka loea.
- Inā ua hoʻokumu ʻia e kahi lāʻau lapaʻau, e noʻonoʻo ke kauka e hoʻololi a hoʻōki paha i ka lāʻau lapaʻau.
ʻO ia hoʻi, hilinaʻi wale ka lāʻau lapaʻau i ke kumu kumu. ʻO ia ke kumu he mea nui e ʻimi i ka ʻōlelo aʻoaʻo lapaʻau a ʻaʻole e lāʻau ponoʻī.
Āhea ʻoe e ʻimi koke ai i ke aʻo lapaʻau?
Inā ʻike ʻoe i kekahi loli i ke kala o nā keʻokeʻo o kou mau maka, ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka me ka hopohopo ʻole. Eia nō naʻe, inā hele pū nā maka polū me nā hōʻailona ma lalo nei, pono ʻoe e hele koke i ka Emergency Department (ETU) o ka haukapila .
- Ka loli koke ʻana o ka ʻike
- ʻIke pōwehiwehi
- Ke kahe nei kahi wai e like me ka waimaka mai nā maka mai.
- ʻIke i ka mālamalama (nā maka polū)
- ʻEha nui o ka maka
Hiki i kēia ke lilo i mau hōʻailona o kahi pilikia maka koʻikoʻi, no laila he mea nui e ʻimi i ka lāʻau lapaʻau me ka hoʻonele ʻole i ka manawa.
Leka Lawe-Home
- ʻO ka Sclera Polū ka wā e lilo ai ke keʻokeʻo o ka maka (sclera) i polū, hina, a poni paha.
- ʻO kēia ke kumu o ka lahilahi o ka sclera, kahi e hiki ai i nā ʻiʻo ma lalo ke ʻike ʻia.
- ʻOiai he ʻano maʻamau kēia he mea ʻino ʻole, hiki i kekahi manawa ke lilo i hōʻailona o kahi kūlana maʻi, e like me ka hemahema o ka hao a i ʻole nā maʻi genetic.
- ʻAʻole pili ka lāʻau lapaʻau i ke kala polū o nā maka, akā, i ke kūlana olakino i hoʻokumu ai.
- Inā ʻike ʻoe i kekahi o kēia mau loli i kou mau maka, ʻoiai inā hele pū lākou me nā hōʻailona ʻē aʻe e like me ka ʻeha o ka maka a i ʻole ka ʻike maka ʻole, e ʻike koke i kāu kauka.
👩🏽⚕️ Nā nīnau hou aku (FAQs)
💬 He lāʻau lapaʻau kūikawā loa nā papa Selexipag / Uptravi i hāʻawi ʻia no ke aha maʻi?
ʻAʻole kēia he lāʻau lapaʻau maʻamau! He lāʻau lapaʻau holomua loa kēia a pipiʻi hoʻi ma ka honua (Prostacyclin receptor agonist) i hāʻawi ʻia i nā pae hope loa o ka 'Pulmonary Arterial Hypertension (PAH),' he maʻi make kahi e emi ai nā kīʻaha koko e hele ana mai ka puʻuwai a i nā māmā, a piʻi ke koko i loko o lākou me ke ʻano ʻē, e make ai nā māmā a me ka puʻuwai!
💬 Ke ʻole ke kahe koko i nā māmā, pehea lā e hoʻonui ai ka lawe ʻana i kēia mau pila (Uptravi) i nā kīʻaha koko?
Aia kahi kemika i kapa ʻia ʻo 'Prostacyclin' i loko o ke kino e hoʻonui/hoʻonui i nā kīʻaha koko e lawe ana i ke koko i nā māmā (nā ʻaʻa Pulmonary), akā ʻaʻohe o nā maʻi PAH. Ke komo kēia pila i loko o ke kino, hele pololei ia i nā mea loaʻa (nā mea loaʻa IP) i loko o nā kīʻaha koko o nā māmā a kaomi i kahi pihi! A laila ua hoʻopunipuni ʻia ka lolo e manaʻo ua hōʻea mai ʻo 'Prostacyclin', a laila hoʻomaha koke nā kīʻaha koko i ʻūlū ʻia i loko o nā māmā (Vasodilation), a nalowale koke ke kaumaha ma ka puʻuwai.
💬 He aha nā hopena ʻaoʻao hiki ʻole ke hoʻomanawanui ʻia o ka lawe ʻana i ka lāʻau lapaʻau (Selexipag) i hāʻawi ʻia no kēia maʻi koʻikoʻi?
ʻO ka hapa nui o nā hopena ʻaoʻao o kēia mai ka ʻoiaʻiʻo e kaomi ana i nā pihi ma nā kīʻaha koko ma ke kino holoʻokoʻa (ka hopena Prostacyclin)! ʻO nā hopena ʻaoʻao maʻamau ka 'ʻeha poʻo' hiki ʻole ke hoʻomanawanui ʻia (ma muli o ka nui ʻana o nā kīʻaha koko), ʻeha nui o nā ʻiʻo a me ka ʻāwae (ʻeha ʻāwae / Myalgia), a me ka maʻi diarrhea! Eia kekahi, ʻo ka ʻulaʻula koke (flushing) hiki ke lilo i pilikia nui.
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