I kekahi manawa, hiki i ka mālama ʻana i ke kaumaha o kā mākou iho a i ʻole ke kaumaha o kā mākou mau keiki ke lilo i mea paʻakikī nui. ʻOiai inā he maʻi genetic kakaikahi ke kumu i hiki ʻole ke kāohi ʻia me ka ʻai maʻamau a me ka hoʻoikaika kino, hiki ke hoʻopilikia loa. Ua ʻōlelo anei kāu kauka i kahi lāʻau pale i kapa ʻia ʻo 'Setmelanotide' nou a i ʻole kāu keiki? No laila e kamaʻilio kākou e pili ana i nā nīnau a me nā hopohopo āu e pili ana i kēia lāʻau lapaʻau ma nā ʻōlelo maʻalahi i kēia lā.
He aha kēia lāʻau pale 'Setmelanotide'?
I ka ʻōlelo maʻalahi, ʻaʻole ʻo Cetmelanotide kahi lāʻau hoʻemi kaumaha i hāʻawi ʻia i nā mea āpau. He lāʻau ia i hāʻawi ʻia e kāohi i ka momona i hoʻokumu ʻia e kekahi mau kūlana genetic kikoʻī loa a kakaikahi. No kahi papa o nā lāʻau i kapa ʻia ʻo 'melanocortin 4 (MC4) agonists'. I nā huaʻōlelo maʻalahi loa, kuhikuhi kēia lāʻau i kahi ʻōnaehana hōʻailona i loko o ko mākou lolo e kāohi ana i ka pōloli a me ka hoʻolilo ʻana o ka ikehu o ke kino, a kōkua i ka hoʻihoʻi ʻana i kāna hana.
ʻOi aku ka nui o ka manaʻo no kēia lāʻau lapaʻau no nā poʻe me nā kūlana genetic kakaikahi:
- ʻO ka maʻi Bardet-Biedl (BBS)
- Ka hemahema o Proopiomelanocortin (POMC)
- Ka hemahema o ka Proprotein convertase subtilisin/kexin type 1 (PCSK1)
- Ka hemahema o ka mea loaʻa leptin (LEPR)
I loko o kēia mau kūlana, ʻaʻole i loaʻa i ke kino ka hōʻailona "ua piha ka ʻōpū, ua hiki i ka manawa e ʻai ai." ʻO kēia ke alakaʻi i ka momona nui me ka pōloli hiki ʻole ke kāohi. Kōkua kēia lāʻau pale i ka hoʻoponopono ʻana i ka hana o kēlā ʻōnaehana hōʻailona. ʻO ka maʻamau, aia kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo 'IMCIVREE'.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i ka lāʻau lapaʻau
Ma mua o kou hoʻomaka ʻana e lawe i kēia lāʻau lapaʻau, he mea nui loa ia e kamaʻilio ākea me kāu kauka e pili ana i kou mōʻaukala olakino piha. Ma ke ʻano kūikawā, pono ʻoe e haʻi i kēia mau mea:
- Inā loaʻa iā ʻoe ke kaumaha i kēia manawa a i ʻole ua loaʻa iā ʻoe ma mua.
- Inā ua loaʻa iā ʻoe nā manaʻo pepehi iā ʻoe iho a i ʻole ka hoʻāʻo ʻana e pepehi iā ʻoe iho.
- Inā he maʻi puʻupaʻa kou .
- Inā he mau maʻi ʻaleka kou i ka cetmelanotide a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
- Inā ʻoe e hāpai ana a i ʻole e hoʻāʻo ana e hāpai.
- Inā he makuahine hānai waiū ʻoe.
Ma muli o kēia ʻike, hiki i kāu kauka ke hoʻoholo inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha.
Pehea e hoʻohana pono ai i ka lāʻau pale?
He inikini subcutaneous kēia. ʻO ia hoʻi, ua inikini ʻia i loko o ka papa momona ma lalo o ka ʻili, ʻaʻole i loko o ka ʻiʻo. Akā, mai hopohopo. Na kāu kauka a i ʻole ke kahu maʻi i aʻo ʻia e hāʻawi iā ʻoe i ke aʻo e pono ai ʻoe e hāʻawi iā ʻoe iho i kēia inikini ma ka home.
Nā mea nui e hoʻomanaʻo ai:
- E lawe iā ia i ka manawa kūpono:He mea nui e lawe i ka lāʻau lapaʻau i ka manawa like i kēlā me kēia lā. E hoʻohana i ka nui kūpono e like me ke kauoha a kāu kauka.
- Mai ho'ōki: Mai ho'ōki i ka lawe ʻana i ka lāʻau a hiki i ka wā e ʻōlelo aku ai kāu kauka.
- E hoʻolei palekana i nā nila: He mea nui loa kēia. Mai hoʻolei i nā nila a i ʻole nā syringe i hoʻohana ʻia i loko o ka ʻōpala. Hiki i kēia ke hoʻoweliweli i nā poʻe ʻē aʻe. Aia kahi pahu plastik ikaika kūikawā ('pahu ʻoi') hiki iā ʻoe ke hoʻohana e hoʻolei i kēia mau mea. Inā ʻaʻohe āu, e noi i kāu kauka no hoʻokahi.
- Inā hāʻawi ʻia i nā keiki: Paipai ʻia kēia lāʻau lapaʻau no nā keiki ma luna o 6 mau makahiki i kekahi mau hihia. Eia nō naʻe, pono e mālama pono ʻia. E kamaʻilio me kāu kauka keiki e pili ana i kēia.
He aha inā lawe wau i ka nui o ka lāʻau lapaʻau?
Inā hana ʻia kēlā mea, mai hopohopo a kāhea koke aku i ke Kikowaena ʻIke Lāʻau Lapaʻau Lahui ma ka Halemai Lahui ʻo Colombo . A i ʻole, e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
Nā mea e makaʻala ai i ka wā e hoʻohana ai i ka lāʻau lapaʻau
He mea nui loa e mālama mau i ka launa pū ʻana me kāu kauka i ka wā e hoʻohana ana i kēia lāʻau.
- E makaʻala i nā loli o ke ʻano: ʻO kēia ka mea nui loa. Inā ʻike ʻoe a i ʻole kou ʻohana i kekahi mau loli i kāu ʻano a i ʻole ke ʻano o kāu keiki, mai hoʻowahāwahā iā ia. Eia kekahi laʻana:
- Ke hoʻomaka hou ʻana a i ʻole ka ʻino ʻana o ke kaumaha .
- He mau manaʻo e hōʻeha iā ʻoe iho .
- Hoʻonui ʻia ka makaʻu a me ka hopohopo .
- Nā manaʻo ʻē aʻe i kū ʻole a hoʻopilikia paha.
- Poho ka hoʻomanaʻo.
Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, e kamaʻilio koke me kāu kauka. He mea nui e makaʻala iā lākou, no ka mea, he hopena ʻaoʻao paha ia o ka lāʻau lapaʻau.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i ka cetmelanotide ke hana i kekahi mau hopena ʻaoʻao. Hiki ke hoʻokaʻawale ʻia kēia mau mea i ʻelua mau ʻāpana nui.
| Ka hoʻokaʻawale ʻana o nā hopena ʻaoʻao | |
|---|---|
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe a i ʻole ke alelo. |
| Nā loli i ke kūlana noʻonoʻo | Kaumaha, manaʻo pepehi iā ia iho, nā loli koke o ka naʻau. |
| Nā hopena hiki ke loaʻa i nā kāne | He kūkulu lōʻihi a ʻeha paha e mau ana no nā hola. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā hopena ma ka wahi inikini | ʻEha, ʻulaʻula, a pehu paha. |
| Nā hopena ma ka ʻōnaehana hoʻoheheʻe | Ka luaʻi, ka maʻi pākīkī, ka ʻeha o ka ʻōpū. |
| Nā hopena ʻē aʻe | ʻEha poʻo, ʻili ʻole ke ʻano. |
ʻAʻole i loko o kēia papa inoa nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mea ʻē, e kamaʻilio me kāu kauka e pili ana i ia mea.
Pehea e mālama pono ai i ka lāʻau lapaʻau?
He mea nui hoʻi e mālama pono i kēia lāʻau.
- E mālama ʻia mai nā keiki a me nā holoholona.
- ʻO ke ala maikaʻi loa e mālama ai, ʻo ia ka mālama ʻana i loko o ka pahu hau: E mālama i nā ʻōmole i wehe ʻole ʻia i loko o ka pahu hau. Mai wehe i ka ʻōmole a hiki i ka wā e hoʻohana ai.
- Ka mālama ʻana ma ka mahana o ka lumi: Inā pono, hiki ke mālama ʻia ma ka mahana o ka lumi (ma waena o 20-25 kekelē Celsius) a hiki i 30 mau lā.
- ʻO ka mea nui loa: Pono e hoʻolei ʻia kahi ʻōmole i wehe ʻia ma hope o 30 mau lā, a i ʻole ma hope o ka lā pau ma luna.
Leka Lawe-Home
- ʻAʻole ʻo Cetmelanotide kahi lāʻau hoʻemi kaumaha maʻamau. Hāʻawi wale ʻia ia no nā kūlana genetic kūikawā loa e hoʻoulu ai i ka momona.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha, ʻoiai kekahi mau pilikia olakino noʻonoʻo.
- ʻOiai e lawe ana i ka lāʻau lapaʻau, e makaʻala loa i nā loli i kāu ʻano a i ʻole ke ʻano o kāu keiki. Inā ʻike ʻoe i kekahi mau loli, e hoʻomaopopo koke i kāu kauka .
- E hoʻolei mau i nā nila a me nā syringe i hoʻohana ʻia me ka palekana i loko o kahi pahu ʻoi.
- Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me nā poʻe ʻē aʻe.
- E hahai mau i nā ʻōlelo a kāu kauka. Mai makaʻu e nīnau i kāu kauka i kāu mau nīnau.
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