Ua haʻi aku kāu kauka iā ʻoe a i ʻole kekahi o kou ʻohana he maʻi i kapa ʻia ʻo Primary Hyperoxaluria Type 1 (PH1)? Inā pēlā, ua haʻi ʻia paha iā ʻoe e pili ana i kahi lāʻau i kapa ʻia ʻo Lumasiran. ʻOiai he lāʻau lapaʻau kūikawā a maʻamau ʻole kēia, nui paha kāu mau nīnau e pili ana i ia mea. He mea maʻamau ke noʻonoʻo i nā mea e like me, "He aha ka mea e hana ʻia me kēia?", "Palekana anei?", "Aia kekahi mau hopena ʻaoʻao?" No laila, mai hopohopo, i kēia lā e kamaʻilio mākou e pili ana i kēia lāʻau pale Lumasiran ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.
E nānā mua kākou, he aha ʻo Lumasiran?
I ka ʻōlelo maʻalahi, ʻo Lumasiran (inoa inoa: OXLUMO) he lāʻau pale kūikawā i hāʻawi ʻia i nā pākeke a me nā keiki me kahi maʻi genetic laha ʻole i kapa ʻia ʻo Primary Hyperoxaluria Type 1 (PH1).
ʻAe, e nānā kākou i ka mea e hana maoli ana. ʻO ke kanaka me ka maʻi PH1 e hana i kahi kemika i kapa ʻia ʻo oxalate i loko o ko lākou kino, ʻoi aku hoʻi i loko o ke akepaʻa. Hoʻohui kēia oxalate keu me ka calcium e hana i nā kristal liʻiliʻi e like me ke one. Hiki i kēia mau kristal ke waiho i loko o nā puʻupaʻa a me ke ala mimi, e hōʻino nui ana i nā puʻupaʻa, nā pōhaku puʻupaʻa, a ma hope ka hāʻule ʻana o nā puʻupaʻa.
ʻO ka hana nui o ka lāʻau pale Lumasiran ka hoʻemi ʻana i ka nui o ka oxalate i hana ʻia me ke kumu ʻole i loko o ke kino. He kōkua nui kēia i ka kaohi ʻana i ka hōʻino ʻia o nā puʻupaʻa.
ʻAʻole kēia he pila. He inikini ia ma lalo o ka ʻili o ke kino.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui loa ia e haʻi i kāu kauka i kou mōʻaukala olakino piha, ʻoiai e pili ana i kēia mau mea.
- Nā Allergies: E ʻoluʻolu e haʻi maopopo mai inā he mau allergies kou, ʻaʻole wale i Lumasiran, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā mea hoʻoluʻu meaʻai, a i ʻole nā mea hoʻomalu.
- Hāpai keiki: Pono ʻoe e haʻi inā ʻoe e hāpai ana i kēia manawa a i ʻole e kali koke ana i kahi pēpē.
- Ka hānai waiū ʻana: Inā he makuahine hānai waiū ʻoe, e hoʻomaopopo pū i ke kauka.
Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau lapaʻau iā ʻoe, a i ʻole inā pono ʻoe e lawe iā ia me ka mālama kūikawā.
Pehea e hāʻawi ʻia ai kēia lāʻau pale? A ke hāʻawi ʻia nei i nā keiki?
ʻAʻole kēia he lāʻau pale hiki iā ʻoe ke lawe i ka home a hāʻawi iā ʻoe iho. Hāʻawi mau ʻia ia ma lalo o kou ʻili ma kahi haukapila a i ʻole ke keʻena lapaʻau e ke kauka a kahu maʻi paha i aʻo ʻia. No laila, pono ʻoe e hele i ke keʻena lapaʻau i nā lā i hoʻonohonoho ʻia no kēia.
Ke hāʻawi nei ʻoe i kēia lāʻau lapaʻau i nā keiki?
ʻAe, hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki me ka maʻi PH1. Eia nō naʻe, i ka hāʻawi ʻana i kēia lāʻau lapaʻau i kahi keiki, pono e uku ʻia ka nānā kūikawā i nā mea e like me ka makahiki a me ke kaumaha. No laila, inā ua kuhikuhi ʻia kēia lāʻau lapaʻau i kāu keiki, e ʻoluʻolu e kūkākūkā i nā nīnau a kānalua paha āu e loaʻa ai me ke kauka.
E makaʻala kākou i ka nui o ka lāʻau lapaʻau.
He aha ka mea e hana ai inā ʻoe e lawe i ka overdose?
ʻOiai ua hāʻawi ʻia kēia ma kahi haukapila, ua haʻahaʻa loa ka manawa kūpono e kuhihewa ai i ka nui o ka lāʻau. Eia nō naʻe, inā he kānalua kou ua loaʻa iā ʻoe ka nui o kēia lāʻau lapaʻau, e hoʻomaopopo koke i nā limahana lapaʻau. A i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa. Inā pono, hiki iā ʻoe ke kelepona i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
He aha kāu e hana ai inā e hala ʻoe i kahi mahele o ka lāʻau pale?
He mea nui loa ka loaʻa ʻana o ka lāʻau pale i ka manawa kūpono a me nā lā i hoʻonohonoho ʻia no ka holomua o kēia lāʻau lapaʻau. No laila, mai poina i nā lā i hāʻawi ʻia e ke kauka. Inā ʻaʻole hiki iā ʻoe ke hele ma muli o kahi kumu wikiwiki, hiki ʻole ke pale ʻia, e kāhea koke aku i kāu kauka a i ʻole ke keʻena lapaʻau a e haʻi iā lākou i kēia a noi i ka ʻōlelo aʻo no ka lā aʻe e hiki mai ana.
E makaʻala i nā hopena ʻaoʻao
E like me nā lāʻau lapaʻau āpau, hiki iā Lumasiran ke hana i kekahi mau hopena ʻaoʻao. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau. E nānā kākou i kēia mau hopena ʻaoʻao.
| ʻAno o ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika koʻikoʻi | Inā loaʻa iā ʻoe kekahi mau hōʻailona e like me ka ʻulaʻula o ka ʻili, ka hives, ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo, a i ʻole ka paʻakikī o ka hanu ʻana, e ʻimi koke i ke kōkua lapaʻau. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā hopena ma ka wahi inikini | Hiki ke loaʻa ka ʻulaʻula, ka ʻeha, ka pehu, a i ʻole ka maneʻo ma kahi i ini ʻia. Nalo pinepine kēia mau mea i loko o kekahi mau lā. |
| ʻEha ʻōpū | Hiki i kekahi poʻe ke loaʻa i kahi ʻeha ʻōpū iki. |
ʻO ka mea nui loa, ʻoiai inā ʻaʻole ʻoe e ʻike i kekahi mea ma kēia papa inoa, mai makaʻu e kamaʻilio me kāu kauka e pili ana i ia mea inā ʻike ʻoe i kekahi mea ʻē a ʻokoʻa paha.
E loaʻa anei nā pilikia me nā lāʻau lapaʻau ʻē aʻe?
Wahi a nā haʻawina i mālama ʻia a hiki i kēia manawa, ʻaʻohe hōʻike e pili ana i ka lāʻau pale Lumasiran i ka pilina me nā lāʻau lapaʻau ʻē aʻe.
Eia naʻe, ʻaʻole ia manaʻo hiki iā ʻoe ke hoʻohana i nā mea āu e makemake ai. No kou palekana ponoʻī, ʻoi aku ka maikaʻi o ka haʻi ʻana i kāu kauka e pili ana i nā mea āpau āu e hoʻohana nei.
- Nā lāʻau lapaʻau i kuhikuhi ʻia
- Nā lāʻau lapaʻau ʻole i kauoha ʻia
- Nā huaora a i ʻole nā mea hoʻohui ʻē aʻe
- Nā lāʻau lapaʻau kuʻuna a i ʻole Ayurvedic (nā huahana lāʻau lapaʻau)
E haʻi i kāu kauka e pili ana i kēia mau mea a pau. Eia kekahi, e haʻi iā ia inā ʻoe e puhipaka a inu waiʻona paha.
Leka Lawe-Home
- He inikini kūikawā ʻo Lumasiran i hāʻawi ʻia e hōʻemi i ka nui o ka oxalate e hōʻiliʻili ana i loko o ke kino ma muli o ka Primary Hyperoxaluria Type 1 (PH1).
- Hāʻawi wale ʻia kēia lāʻau pale ma kahi haukapila a i ʻole ke keʻena lapaʻau e nā limahana lapaʻau i aʻo ʻia. ʻAʻole ia he lāʻau lapaʻau e lawe ʻia i ka home.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e hōʻoia e haʻi i kāu kauka e pili ana i kāu mau maʻi allergies āpau, nā kūlana olakino ʻē aʻe, a me nā lāʻau lapaʻau āpau āu e lawe nei.
- Mai poina i kāu mau manawa hoʻopaʻa lāʻau lapaʻau i hoʻonohonoho ʻia. Inā ʻaʻole hiki iā ʻoe ke hele no kekahi kumu, e kāhea koke aku i kāu kauka.
- Inā loaʻa iā ʻoe nā hōʻailona maʻi ʻaleka koʻikoʻi e like me ka pehu ʻana o ka maka, nā lehelehe, ka paʻakikī o ka hanu ʻana, a i ʻole nā ʻulaʻula o ka ʻili, e ʻimi koke i ke kōkua lapaʻau.
- Mai kānalua e kamaʻilio me kāu kauka e pili ana i nā hōʻailona ʻē a i ʻole nā hopena ʻaoʻao āu e ʻike ai.
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