E noʻonoʻo ʻaʻole hiki iā ʻoe ke hele i waho i ka lā. He aha inā ʻoe e ʻike i ka ʻeha hiki ʻole ke hoʻomanawanui ke hele ʻoe i waho, me he mea lā e wela ana kou ʻili a ʻā ana? No kekahi poʻe, he ʻokoʻa maoli kēia. Ua kapa ʻia kēia ʻo Erythropoietic Protoporphyria (EPP). No laila i kēia lā ke kamaʻilio nei mākou e pili ana i kahi lāʻau lapaʻau kūikawā e hiki ke kōkua i nā poʻe e like me kēia. ʻO ia ka lāʻau i kapa ʻia ʻo Afamelanotide.
He aha ka ʻAfamelanotide?
I ka ʻōlelo maʻalahi, ʻo Afamelanotide kahi lāʻau lapaʻau i hoʻohana ʻia e mālama i kahi maʻi i kapa ʻia ʻo Erythropoietic Protoporphyria (EPP) . ʻAʻole ia he mea āu e lawe ai e like me ka pila a i ʻole e loaʻa e like me ka inikini . He mea liʻiliʻi loa ia, e like me ka nui o kahi hua laiki. Kāhea mākou ia he implant . Hoʻokomo ʻia ma lalo o ka ʻili e kāu kauka.
I kēia manawa, e nānā kākou i ka mea e hana ʻia. Loaʻa i ko kākou ʻili kahi pigment i kapa ʻia ʻo melanin e hāʻawi iā ia i ke kala. Ua ʻike paha ʻoe he keʻokeʻo loa kekahi poʻe, he keʻokeʻo kekahi, a he ʻeleʻele kekahi. ʻO ke kumu o kēia mau kala i kapa ʻia ʻo melanin. Mālama maoli ʻo Melanin i ko kākou ʻili mai ka lā. Ua like ia me ka sunscreen kūlohelohe.
No laila, ʻike ka poʻe me kēia maʻi EPP i nā hopena ʻili ʻeha ke hōʻike ʻia i ka lā. Hoʻonui ka Afamelanotide i ka hana ʻana o ka melanin i loko o ko mākou kino. A laila hāʻawi kēia i ka ʻili me ka pale kūlohelohe, e hōʻemi ana i ka ʻike i ka lā a pale i nā kūlana ʻeha. Loaʻa pinepine kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo SCENESSE.
Nā mea e haʻi aku i kāu kauka ma mua o ka hana ʻana i kēia lāʻau lapaʻau
Ma mua o ka hāʻawi ʻana iā ʻoe i kēia lāʻau lapaʻau, e nīnau aku kāu kauka iā ʻoe i kekahi mau nīnau. Pono ʻoe e maopopo e pili ana i kēia mau mea.
- Inā he maʻi allergy kou i kēia lāʻau Afamelanotide a i ʻole kekahi lāʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha, e ʻoluʻolu e haʻi mai iā mākou e pili ana.
- E hōʻoia e hoʻomaopopo mai iā mākou inā ʻoe e hāpai ana a i ʻole e hoʻāʻo ana e hāpai .
- Inā he makuahine hānai ʻoe, pono ʻoe e haʻi i kēlā.
He mea nui loa kēia ʻike no ke kauka e hāʻawi iā ʻoe i ka lāʻau kūpono a palekana loa.
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻAʻole kēia he mea hiki iā ʻoe ke hana ma ka home. Pono e hana ʻia ma ka haukapila a i ʻole ke keʻena lapaʻau e kāu kauka a i ʻole kahi hui mālama ola i aʻo ʻia.
Hoʻokomo pinepine ʻia kēia mea hoʻokomo ma lalo o ka ʻili i loko o kou ʻōpū . Ma hope o ka pau ʻana, e mālama i ka ʻāina i maʻemaʻe a maloʻo no 24 mau hola.Pono ʻoe e mālama ia mea. Na ke kauka e hāʻawi iā ʻoe i nā kuhikuhi e pono ai.
Hoʻoneʻe ʻia kēia mea hoʻokomo e ke kauka ponoʻī ma hope o ʻelua mahina. Ma hope o kēlā, hiki ke hoʻokomo ʻia kahi mea hou inā pono.
ʻO ka mea nui loa, he lāʻau lapaʻau kēia i kuhikuhi ʻia nou wale nō. Mai kaʻana like me kekahi.
He kūpono kēia no nā kamaliʻi liʻiliʻi?
Pono e mālama pono i ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki. No laila, inā ʻoe e noʻonoʻo nei i kēia lāʻau lapaʻau no kāu keiki, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me ke kauka pediatric e pili ana i ia mea.
He aha kāu e hana ai inā lawe nui ʻoe i ka lāʻau lapaʻau?
Hoʻokele ʻia kēia e kahi hui lapaʻau, no laila ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā manaʻo ʻoe ua hana ʻia kekahi mea e like me kēia, e hele koke i ka Emergency Treatment Unit (ETU) . A i ʻole e kelepona i ke National Poisons Information Centre ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
Nā mea e noʻonoʻo ai i ka wā e mālama ʻia ai
Aia kekahi mau mea e pono ai ʻoe e makaʻala ma hope o ke kau ʻana o kēia implant.
- E ʻike i kāu kauka i ka manawa kūpono: E hoʻomau i ka launa pū ʻana me kāu kauka i nā manawa a pau e ʻike ai pehea ʻoe e hana nei. E haʻi iā lākou inā e ʻoi aku ka ʻino o kāu mau hōʻailona a i ʻole.
- E nānā i kou ʻili: He mea nui e nānā i kou ʻili ma ka liʻiliʻi ʻelua i ka makahiki. Hiki i kēia lāʻau lapaʻau ke hoʻolilo i kou ʻili, nā freckles, a me nā māka hānau e ʻeleʻele iki. ʻOiai he mea maʻamau kēia, he manaʻo maikaʻi e ʻike i ke kauka e nānā i nā loli ʻē aʻe.
- Inā puka mai ka implant: He mea kākaʻikahi loa, hiki i kahi implant i kau ʻia ma lalo o ka ʻili ke puka mai i waho o ke kino ma kāna iho. Inā kānalua ʻoe ua hana ʻia kēia, e kāhea koke i kāu kauka.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke hana i nā hopena ʻaoʻao i kekahi poʻe. Akā, ʻaʻole hana nā kānaka a pau. E nānā kākou i ke ʻano o ia mau mea.
| ʻAno o ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā mea e hōʻike koke aku ai i kāu kauka | |
| Nā hopena alerika | Nā mea e like me ka ʻulaʻula o ka ʻili, ka maneʻo, ka pehu ʻana o ka maka, nā lehelehe, ke alelo, a me ka puʻu paha. |
| Nā mea i maʻa mau ʻole i ka nui, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā hiʻohiʻona like ʻole | |
ʻAʻole i loko o kēia papa inoa nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē, e ʻoluʻolu e kelepona i kāu kauka no ka ʻōlelo aʻo.
Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?
Wahi a nā hoʻokolohua i mālama ʻia a hiki i kēia manawa, ʻaʻole i ʻike ʻia ʻo Afamelanotide e hoʻoulu i nā pilikia me nā lāʻau lapaʻau ʻē aʻe.
Eia nō naʻe, he mea nui loa ia e haʻi aku i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe, nā huaora, nā lāʻau lapaʻau lāʻau, a i ʻole nā mea hoʻohui āu e lawe nei. Eia kekahi, e haʻi aku i kāu kauka inā ʻoe e puhipaka a inu waiʻona paha, no ka mea, hiki i kekahi o kēia mau mea ke hoʻopilikia i kāu mālama ʻana.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Afamelanotide no kahi maʻi i kapa ʻia ʻo Erythropoietic Protoporphyria (EPP), ka mea e hoʻolilo ai i ka ʻili i mea pili i ka lā.
- He mea hoʻokomo liʻiliʻi kēia i waiho ʻia ma lalo o ka ʻili. Hana ia ma ka hoʻonui ʻana i ka hana ʻana o ka melanin, ka pigment e pale ai i ka ʻili.
- Hoʻokele ʻia a wehe ʻia kēia lāʻau e kahi hui lapaʻau ma kahi haukapila a i ʻole keʻena lapaʻau.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mau maʻi āpau, nā maʻi allergies, a me nā lāʻau lapaʻau āu e lawe nei.
- Inā ʻike ʻoe i nā hōʻailona maʻi e like me ka ʻili ʻulaʻula a me ka pehu ʻana, e ʻimi koke i ke kōkua lapaʻau.
- He mea nui e ʻike pinepine i kāu kauka a e nānā ʻia kou kūlana.
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