Ua kuhikuhi ʻia anei ʻoe a i ʻole kekahi āu i ʻike ai i kahi lāʻau lapaʻau i kapa ʻia ʻo 'Givosiran' e ke kauka? Ke lohe ʻoe i kēlā inoa, manaʻo paha ʻoe he mea ʻike ʻole iki, ʻo ia hoʻi, he mea ʻike ʻole, a malia paha he mea makaʻu iki. He mea maʻamau ke manaʻo pēlā. No ka mea, ʻaʻole kēia nā ʻano lāʻau lapaʻau a mākou e lohe ai i kēlā me kēia lā. No laila i kēia lā, e kamaʻilio kākou e pili ana i kēia lāʻau lapaʻau i kapa ʻia ʻo Givosiran, no ke aha ia, pehea e hoʻohana ai, a me nā hana palekana āu e pono ai e hana, ma ke ʻano maʻalahi loa e hiki ai iā ʻoe ke hoʻomaopopo.
He aha kēia Givosiran?
I ka ʻōlelo maʻalahi, he lāʻau pale ʻo Givosiran. Ua ʻike nui ʻia ʻo ia ma ka inoa inoa ʻo "(GIVLAARI)". Hoʻohana nui ʻia kēia lāʻau lapaʻau e mālama i kahi maʻi laha ʻole i kapa ʻia ʻo "Acute Hepatic Porphyria" .
I kēia manawa, ke noʻonoʻo nei paha ʻoe i ke ʻano o ka 'Acute Hepatic Porphyria'. He maʻi genetic kēia e kū mai ana i loko o ko kākou ake. Pono ko kākou kino i kahi kemika i kapa ʻia ʻo 'porphyrin' e hana i ka hemoglobin i loko o ke koko. Eia nō naʻe, i ka poʻe me kēia maʻi, ma muli o kahi kīnā i kēlā kaʻina hana, hōʻiliʻili kēia kemika i kapa ʻia ʻo porphyrin me ke kumu ʻole i loko o ke kino. Hiki i kēia ke hana i nā hōʻailona koʻikoʻi e like me ka ʻeha nui o ka ʻōpū, ka luaʻi ʻana, ka nāwaliwali o nā ʻiʻo, a me nā pilikia noʻonoʻo.
He mea kūikawā loa kēia lāʻau pale, i kapa ʻia ʻo Givosiran. Hana ʻia ia me ka hoʻohana ʻana i kahi ʻenehana holomua loa i kapa ʻia ʻo 'small interfering RNA' (siRNA) . ʻO ke ʻano kēia, hele pololei kēia lāʻau i loko o ko kākou mau cell a hoʻōki i ka leka genetic e hoʻoulu ai i ka hōʻiliʻili ʻino o ka porphyrin. Ua like ia me ke kāohi ʻana i kahi mea e hāʻawi ana iā ʻoe i ka ʻōlelo aʻo hewa.
ʻAʻole kēia e like me ka lāʻau hoʻopau ʻeha maʻamau. He lāʻau lapaʻau i kuhikuhi pono ʻia e hele ana i ke kumu o ka maʻi a mālama iā ia.
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 iā Givosiran, he mea nui loa ia e kamaʻilio ākea me kāu kauka e pili ana i kou mōʻaukala olakino piha. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea:
- Maʻi puʻupaʻa: Inā loaʻa iā ʻoe kekahi maʻi e pili ana i ka puʻupaʻa.
- Maʻi akepaʻa: Inā loaʻa iā ʻoe nā maʻi akepaʻa ʻē aʻe ma waho aʻe o kou maʻi porphyria i kēia manawa.
- Nā maʻi ʻaleka: E haʻi i kāu kauka inā loaʻa iā ʻoe kekahi maʻi ʻaleka, ʻaʻole wale iā Givosiran, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, kala, a mea hoʻomalu paha.
- Hāpai: Inā hāpai ʻoe a i ʻole e kali koke ana i kahi pēpē.
- Inā he makuahine hānai waiū ʻoe: Inā ʻoe e hānai waiū ana i kāu pēpē.
Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau iā ʻoe a ʻaʻole paha a pehea e hoʻomau ai.
Pehea e loaʻa ai ka lāʻau lapaʻau a me nā mea e makaʻala ai
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home a hoʻohana.
- Hoʻokele: He inikini subcutaneous kēia.
- Kahi: Hāʻawi wale ʻia kēia lāʻau pale ma kahi keʻena lapaʻau, e like me ka haukapila a i ʻole ke keʻena lapaʻau, e kekahi loea mālama ola i aʻo ʻia.
- No nā keiki: Inā hoʻohana ʻia kēia lāʻau lapaʻau i nā keiki ʻōpio, pono ka mālama kūikawā ma lalo o ke aʻo ʻana a ke kauka pediatric.
- Inā ʻoe e poina i kahi lāʻau lapaʻau: E hāʻawi kāu kauka iā ʻoe i kahi lā a me ka manawa e loaʻa ai kāu lāʻau pale. He mea nui loa ia e loaʻa kāu lāʻau lapaʻau i ka manawa kūpono. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i kēlā lā, e kelepona koke i kāu kauka a i ʻole ke keʻena lapaʻau a e hoʻomaopopo iā lākou.
- Inā ʻoe e overdose: ʻOiai ke lawelawe ʻia nei kēia e kahi loea lapaʻau, haʻahaʻa loa ka manawa kūpono o ka overdose. Eia nō naʻe, inā manaʻo ʻoe ua hana ʻia kekahi mea, pono ʻoe e kelepona koke i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo , a i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
Nā hopena ʻaoʻao hiki ke loaʻa o ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, hiki iā Givosiran ke hana i nā hopena ʻaoʻao i kekahi poʻe. He mea nui e makaʻala i kēia mau mea. E hoʻokaʻawale kākou i kēia i ʻelua ʻāpana.
| Nā hopena ʻaoʻao a me nā hōʻailona | Wehewehena |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono ai ke kōkua koke ʻana o ke kauka | |
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, nā maʻi e like me ka eczema, ka maneʻo, ka pehu ʻana o ka maka, nā lehelehe a i ʻole ke alelo, ka paʻakikī o ka hanu ʻana. Inā loaʻa kekahi o kēia mau mea, he pilikia ia. |
| Nā Hōʻailona o ka ʻeha o ke akepaʻa | Mimi melemele ʻeleʻele a ʻeleʻele paha, melemele o nā maka a i ʻole ka ʻili (jaundice), ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, nausea, nalowale o ka makemake e ʻai, manaʻo palaualelo, a me ke kuni. |
| Nā Hōʻailona o ka ʻeha o ka puʻupaʻa | Paʻakikī i ka mimi ʻana a i ʻole kahi loli nui i ka nui o ka mimi āu e hoʻouna ai (kaʻuʻuku a ʻaʻohe mimi paha e hoʻouna ana). |
| Nā mea i maʻa mau ʻole i ka nui, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Ka luaʻi | Ke manaʻo nei e ʻūlū ana kou ʻōpū a i ʻole makemake ʻoe e luaʻi. |
| ʻEha ma kahi i hoʻokomo ʻia | ʻUlaʻula, pehu iki, a ʻeha paha ma kahi i inikini ʻia. |
| Luhi | Manaʻo luhi ma mua o ka maʻamau. |
Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?
ʻAe, hiki nō. Kāhea mākou i kēlā ʻo 'Nā Hana Lāʻau Lapaʻau'. Hiki i ka lāʻau pale Givosiran ke launa pū me kekahi mau lāʻau lapaʻau ʻē aʻe.
No laila, e haʻi i kāu kauka e pili ana i nā mea āpau āu e hoʻohana ai . ʻO ia hoʻi:
- Nā lāʻau lapaʻau i kuhikuhi ʻia e nā kauka no nā maʻi ʻē aʻe.
- Nā lāʻau lapaʻau i hiki ke kūʻai ʻia mai ka hale kūʻai lāʻau me ke kauoha ʻole ʻia (e like me nā lāʻau hōʻeha, nā lāʻau anu).
- Nā wikamina, nā minelala a i ʻole nā mea hoʻohui ʻē aʻe.
- ʻO Ayurvedic, nā mea kanu kūloko a i ʻole nā mea kanu kuʻuna.
- Inā ʻoe e puhipaka a inu waiʻona paha, e haʻi mai iaʻu.
ʻO ka mea nui, ʻaʻole pono e hoʻohana pū ʻia ka lāʻau lapaʻau noʻonoʻo thioridazine me kēia lāʻau pale. Eia kekahi, hiki i nā huahana i loaʻa ka caffeine a me nā lāʻau lapaʻau kuʻi e like me dextromethorphan ke hana i nā pilikia me kēia.
ʻAʻole i piha kēia papa inoa, no laila ʻoi aku ka maikaʻi o ka maopopo me kāu kauka e pili ana i nā mea āpau āu e lawe nei.
Leka Lawe-Home
- He inikini kūikawā ʻo Givosiran i hāʻawi ʻia ma lalo o ka ʻili no kahi maʻi akepaʻa laha ʻole i kapa ʻia ʻo 'Acute Hepatic Porphyria'.
- Hāʻawi wale ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau e kekahi loea lapaʻau i aʻo ʻia. ʻAʻole ia no ka hoʻohana ʻana ma ka home.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, he mea nui e hoʻomaopopo i kāu kauka e pili ana i kou mau maʻi āpau, nā maʻi allergies, a me nā lāʻau lapaʻau a me nā mea hoʻohui ʻē aʻe āu e lawe nei.
- E makaʻala mau i nā hopena ʻaoʻao koʻikoʻi, e like me nā hopena alerika a i ʻole nā hōʻailona o ka hōʻino ʻana o ke akepaʻa a i ʻole nā puʻupaʻa. Inā ʻike ʻoe i kekahi o kēia mau mea, e hoʻomaopopo koke i kāu kauka.
- Mai poina i nā hoʻāʻo koko a me nā manawa lapaʻau i kauoha ʻia e kāu kauka.
- Inā he mau nīnau a hopohopo paha kāu e pili ana i kēia lāʻau lapaʻau, ʻo ke kauka nāna ʻoe e mālama nei ka mea maikaʻi loa e nīnau aku ai e pili ana i ia mea.
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