Ke ʻike nei hoʻi ʻoe i ka ʻeha hiki ʻole ke hoʻomanawanui a me ka ʻā ʻana o kou ʻili ke hōʻike ʻia i ka lā? No kekahi poʻe, ʻaʻole kēia he mea maʻamau, a he hōʻailona paha ia o kahi maʻi laha ʻole i kapa ʻia ʻo Erythropoietic Protoporphyria (EPP) . No kekahi me kēia maʻi, he ʻike ʻeha loa ka lā. I kēia lā, e kamaʻilio mākou e pili ana i kahi lāʻau lapaʻau kūikawā i hāʻawi ʻia e kōkua i kēlā poʻe, akā me kahi ʻano ʻokoʻa iki.
He aha ka ʻaila Afamelanotide?
I ka ʻōlelo maʻalahi, ʻo Afamelanotide kahi lāʻau lapaʻau e kōkua i ka hōʻemi ʻana i ka pōʻino i kou ʻili mai ka lā a me ka ʻeha e hana ai. Hoʻohana kūikawā ʻia ia no ka poʻe me ke kūlana a mākou i ʻōlelo ai ma mua i kapa ʻia ʻo Erythropoietic Protoporphyria (EPP).
E noʻonoʻo, he maʻi laha ʻole ka EPP i hoʻokumu ʻia e kahi kumu hoʻoilina. Ma kēia, hōʻiliʻili kahi kemika i kapa ʻia ʻo 'protoporphyrin' i loko o ko mākou kino i nā nui he nui i loko o ke koko. Ke hele kēia poʻe i waho i ka lā, hoʻāla ʻia kēlā kemika a hōʻino i ka ʻili, e hōʻeha nui ana a me ka mumū. Hana ka lāʻau ʻo Afamelanotide ma ka hoʻonui ʻana i ka hana ʻana o ka pigment pale o ka ʻili (melanin) a me ka hoʻonui ʻana i kona hiki ke kū i ka lā. No laila, hiki ke hele i waho i kekahi ʻano me ka ʻole o ka ʻeha. Kūʻai ʻia kēia lāʻau lapaʻau ma lalo o ka inoa ʻo SCENESSE .
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hana ʻana i kēia lāʻau lapaʻau
ʻAʻole kēia he pila a he kirīmi paha. He mea hoʻokomo liʻiliʻi ia i kau ʻia ma lalo o ka ʻili. No laila, he mea nui loa e kamaʻilio ākea me kāu kauka ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau. E hōʻoia e hoʻomaopopo iā ia e pili ana i kēia mau mea.
- E pili ana i kāu mau maʻi allergies: E hōʻoia e haʻi mai iā mākou inā he mau maʻi allergies kou, ʻaʻole wale iā Afamelanotide, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, mea hoʻomalu, a i ʻole kala.
- Inā hāpai ʻoe a i ʻole e hoʻāʻo ana e hāpai: ʻAʻole maopopo loa pehea e pili ai kēia lāʻau lapaʻau i ka hāpai ʻana. No laila, he mea nui e haʻi i kāu kauka inā hāpai ʻoe a i ʻole e kali ana i kahi pēpē i ka wā e hiki mai ana.
- Inā he makuahine hānai ʻoe: ʻAʻole maopopo inā komo kēia lāʻau lapaʻau i loko o ka waiū umauma. No laila, no ka palekana o kāu pēpē, e haʻi i kāu kauka inā he makuahine hānai ʻoe ma mua o ka mālama ʻana.
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home. He mea hoʻokomo liʻiliʻi kēia. ʻO kēia mea hoʻokomo, e like me ka nui o kahi hua laiki, ua kau pono ʻia ma lalo o ka ʻili i loko o kou ʻōpū e ke kauka i aʻo ʻia.
- Pono e mālama ʻia kahi i hoʻokomo ʻia ai i ka maʻemaʻe a maloʻo no 24 mau hola . ʻO ke ʻano kēia, ʻaʻole ia e hoʻopili ʻia i ka wai.
- ʻO ka maʻamau ma hope o ʻelua mahinaE wehe ke kauka i ka implant kahiko. Inā makemake ʻoe i ka mālama ʻana, hiki ke hoʻihoʻi ʻia kahi implant hou i kona wahi.
- Pono e mālama pono ʻia i ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki, no laila e kamaʻilio me kāu pediatrician e pili ana i ia mea.
Hoʻomaopopo koʻikoʻi: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi no kekahi kumu.
He aha ka mea e hana ai i ka wā pilikia?
E hoʻomanaʻo, inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, mai hopohopo. E hele koke i ka Emergency Unit (ETU) o ka haukapila. A i ʻole, e kelepona i ke National Poisons Information Centre ma ka Colombo National Hospital no ka ʻōlelo aʻoaʻo.
Nā mea e noʻonoʻo ai i ka wā e mālama ʻia ai
He mea nui e mālama iki i kou kino i ka wā e hana ʻia ai kēia lāʻau lapaʻau.
- Nā nānā kino maʻamau: E hōʻoia e hele i nā nānā kino i nā lā i hāʻawi ʻia e kāu kauka. E haʻi i kāu kauka inā ʻaʻole i hoʻomaikaʻi kāu mau hōʻailona a i ʻole inā e ʻoi aku ka ʻino.
- Ka nānā ʻana i ka ʻili: Hiki i kēia lāʻau lapaʻau ke hoʻolilo i kou ʻili, nā freckles, a me nā moles i ʻeleʻele. No laila, he mea nui e nānā ʻia kou ʻili holoʻokoʻa e ke kauka ma ka liʻiliʻi ʻelua i ka makahiki .
- Kipaku ʻia ʻana o ka implant: He mea kākaʻikahi loa, hiki i kēia implant, aia ma lalo o ka ʻili, ke puka i waho (kipaku) ma kāna iho. Inā manaʻo ʻoe ua puka i waho ka implant, e kāhea koke i kāu kauka.
Nā hopena ʻaoʻao e hiki mai ana ma muli o ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, aia kekahi mau hopena ʻaoʻao. E nānā kākou i ko lākou ʻano. Hiki ke hoʻokaʻawale ʻia kēia i ʻelua mau ʻano nui.
| ʻAno o ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā mea e haʻi koke aku i kāu kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo a ʻōhū paha, pehu ʻana o ka maka, nā lehelehe a i ʻole ke alelo. |
| ʻEha ma kahi implant | ʻEha nui ma kahi i hoʻokomo ʻia ai. |
| Nā mea i maʻa mau ʻole i ka nui, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā hiʻohiʻona like ʻole | Kuke, poniuniu, hiamoe, nausea, luhi. |
| Nā loli i ke kau ʻana o ka implant | ʻUlaʻula a ʻeha iki paha/wela ma kahi i hoʻokomo ʻia ai. |
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?
ʻAʻohe hōʻike i kēia manawa e pili ana i kēia lāʻau lapaʻau e hoʻopili ai me nā lāʻau lapaʻau ʻē aʻe. Eia naʻe, ʻaʻole ia manaʻo ʻaʻole pono ʻoe e haʻi i kāu kauka e pili ana i kēlā me kēia lāʻau lapaʻau āu e lawe ai.
E hāʻawi i kāu kauka i kahi papa inoa o nā mea āpau āu e hoʻohana ai. Pono e komo pū me kēia mau mea:
- Nā lāʻau lapaʻau i kuhikuhi ʻia no nā maʻi ʻē aʻe
- Nā lāʻau lapaʻau ʻole i kauoha ʻia
- Nā lāʻau lapaʻau kuʻuna, nā mea kanu
- Nā huaora a me nā mea hoʻohui meaʻai
Eia kekahi, e hōʻoia e haʻi i kāu kauka inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau ʻē aʻe i pāpā ʻia. Hiki i kekahi mau mea ke launa pū me kāu lāʻau lapaʻau.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Afamelanotide e hōʻemi ana i ka ʻeha o ka ʻili i hoʻopili ʻia i ka lā i hoʻokumu ʻia e kahi maʻi laha ʻole i kapa ʻia ʻo Erythropoietic Protoporphyria (EPP).
- ʻAʻole kēia he lāʻau lapaʻau āu e lawe ai i ka home, akā he mea hoʻokomo liʻiliʻi i waiho ʻia ma lalo o ka ʻili e ke kauka i aʻo ʻia.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i nā maʻi āpau āu e loaʻa ai, inā ʻoe e hāpai ana a hānai waiū paha, a me nā lāʻau lapaʻau āpau āu e lawe nei.
- I ka wā o ka mālama ʻana, e makaʻala i nā loli o ke kala o ka ʻili. E nānā i kou ʻili ma ka liʻiliʻi ʻelua i ka makahiki. Inā hāʻule ka implant ma kāna iho, e haʻi koke i kāu kauka .
- Inā loaʻa iā ʻoe nā hōʻailona maʻi ʻaleka koʻikoʻi, e like me ka pehu ʻana o ka maka, e ʻimi koke i ke kōkua lapaʻau.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo