Ke manaʻo nei ʻoe i kekahi manawa he mae, ʻeha, a ʻūlū paha i kou mau lima a me kou mau wāwae? ʻOiai ke manaʻo nei kekahi poʻe he mau mea maʻamau kēia, i kekahi manawa aia paha kahi maʻi genetic koʻikoʻi a kakaikahi ma hope o lākou. I kēia lā ke kamaʻilio nei mākou e pili ana i kahi inikini i kapa ʻia ʻo Vutrisiran, kahi i hoʻohana ʻia e mālama i kēlā ʻano maʻi kikoʻī. ʻIke nui ʻia ʻo ia ma ka inoa inoa ʻo AMVUTTRA.
He aha ke ʻano lāʻau lapaʻau o kēia Vutrisiran?
I ka ʻōlelo maʻalahi, ʻo Vutrisiran kahi lāʻau lapaʻau i hoʻohana ʻia e mālama i kahi maʻi genetic laha ʻole i kapa ʻia ʻo hereditary transthyretin-mediated amyloidosis (hATTR) .
ʻAe, i kēia manawa ke noʻonoʻo nei paha ʻoe i ke ʻano o kēia maʻi me ka inoa lōʻihi. E wehewehe maʻalahi kākou.
He kūlana kēia e hiki iā kākou ke hoʻoilina mai ko kākou mau genes. ʻO ka mea e hana ʻia ma kēia, ʻo ia ka hoʻololi ʻana o kahi protein i kapa ʻia ʻo 'transthyretin', i hana ʻia i loko o ko kākou ake, i kona ʻano ma ke ʻano ʻē, a hui pū lākou a hana i nā waihona i kapa ʻia ʻo 'amyloid' ma nā ʻāpana like ʻole o ke kino, ʻoi aku hoʻi i loko o ka ʻōnaehana nerve. Hoʻopilikia kēia mau waihona protein maʻamau i nā aʻalolo.
ʻO ia ka manawa e ʻike ʻia ai nā hōʻailona aʻu i ʻōlelo ai ma mua, e like me ka ʻeha e pili ana i ke aʻalolo, ka mae ʻana o nā lālā, ka manaʻo wili, ka nalowale ʻana o ka ʻike ma nā lālā, a me ka nāwaliwali .
Hana kēia lāʻau lapaʻau, i kapa ʻia ʻo Vutrisiran, ma ke kāohi ʻana i ka hana ʻana o kēlā protein ʻano ʻē. ʻO ka hana nui o kēia lāʻau lapaʻau, ʻo ia ka hōʻemi ʻana i ka hōʻino ʻana i nā aʻalolo a me ka kaohi ʻana i nā hōʻailona.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻohana ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻoholo ʻana o kāu kauka e hāʻawi iā ʻoe i kēia lāʻau lapaʻau, e nīnau ʻo ia iā ʻoe i kekahi mau nīnau. I kēlā manawa, pono ʻoe e haʻi iā ia i kēia mau mea me ka hūnā ʻole.
- Nā maʻi ʻaleka: E haʻi mai iā mākou inā he maʻi ʻaleka kou i Vutrisiran, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā kala, a i ʻole nā mea hoʻomalu.
- Hāpai: Inā hāpai ʻoe, e hoʻāʻo ana e hāpai, a manaʻo paha ua hāpai ʻoe, e hoʻomaopopo pono i kāu kauka.
- Inā he makuahine hānai ʻoe: Inā he makuahine hānai ʻoe, e kamaʻilio pū me kāu kauka e pili ana i kēlā.
Pehea e loaʻa ai iaʻu ka injection?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe ma ka home. He inikini subcutaneous ia. Pono ʻoe e loaʻa i kēia inikini i kēlā me kēia ʻekolu mahina.
Hāʻawi ʻia kēia ma kahi haukapila a keʻena lapaʻau paha e ke kauka a kahu maʻi paha i hoʻomaʻamaʻa ʻia no ia mea, no laila ʻaʻohe ou mea e hopohopo ai.
He aha inā e hala iaʻu kahi mahele o ka lāʻau lapaʻau?
He mea nui loa ka loaʻa ʻana o kāu inikini i ka manawa kūpono no kēia lāʻau lapaʻau. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i kāu lā i hoʻonohonoho ʻia, e kāhea koke i kāu kauka a i ʻole ke keʻena lapaʻau a hoʻololi i ka manawa. Mai hoʻokuʻu i kāu lāʻau lapaʻau.
He aha inā ua lawe nui ʻia ka lāʻau lapaʻau?
Hāʻawi ʻia kēia ma kahi haukapila no laila ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, e kelepona koke aku i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo a i ʻole e hele i ka ʻOihana Pilikia (ETU) o ka haukapila kokoke loa.
Nā mea e hoʻomanaʻo ai i ka wā e lawe ai i kēia lāʻau lapaʻau
E nānā mau ana kāu kauka i kou kūlana i kou wā e lawe ana i kēia lāʻau lapaʻau, no laila he mea nui loa e hele i kāu mau manawa i ka manawa kūpono.
- Nā pae wikamina A: Hiki ke emi iho kāu mau pae wikamina A i ka wā e lawe ana i kēia lāʻau. No laila, e kuhikuhi paha kāu kauka i kahi mea hoʻohui wikamina A nou e lawe i kēlā me kēia lā. He mea nui e lawe pololei e like me ka ʻōlelo a kāu kauka. Eia kekahi, e kamaʻilio me kāu kauka e pili ana i nā meaʻai i loaʻa ka wikamina A (e.g., kāloti, ʻuala, sipinaki, hua manu).
- Nā loli o ka ʻike: Inā ʻike ʻoe i kekahi mau loli i kou ʻike, e like me ka ʻike pōwehiwehi a i ʻole ka emi ʻana o ka ʻike pō, mai hoʻowahāwahā. E hōʻike koke aku i kāu kauka.
- Nā lāʻau lapaʻau ʻē aʻe: E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui). ʻAʻole paha e launa pū kēia lāʻau lapaʻau me nā lāʻau lapaʻau ʻē aʻe, akā ʻoi aku ka maikaʻi o ka hoʻomaopopo ʻana i kāu kauka.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kekahi poʻe ke loaʻa nā hopena ʻaoʻao. ʻAʻole e loaʻa i nā kānaka a pau. Eia nō naʻe, he mea nui e makaʻala i kēia mau mea.
| Nā hopena ʻaoʻao o Vutrisiran | |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono ʻoe e hōʻike koke i kāu kauka | |
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| Nā loli o ka ʻike | ʻO nā loli i ka ʻike, e like me ka ʻike pōwehiwehi a i ʻole ka emi ʻana o ka ʻike. |
| Paʻakikī ka hanu ʻana | Pōkole o ka hanu, paʻakikī ka hanu ʻana. |
| Ua emi ka helu o ka puʻuwai | Pōniuniu, manaʻo poniuniu, maule, luhi loa. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i kāu kauka inā hoʻomau lākou | |
| ʻEha hui | ʻEha hui. |
| ʻO ka ʻeha ma kahi o ka injection | ʻUlaʻula, ʻeha, a pehu paha ma kahi i hāʻawi ʻia ai ka inikini. |
ʻAʻole i loko o kēia papa inoa nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē aʻe, e kamaʻilio me kāu kauka e pili ana i ia mea.
Leka Lawe-Home
- He inikini kūikawā ʻo Vutrisiran e mālama ai i kahi maʻi neurological laha ʻole i kapa ʻia ʻo hATTR .
- Hāʻawi ʻia kēia lāʻau lapaʻau e nā limahana lapaʻau i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau. ʻAʻole hiki iā ʻoe ke mālama a hoʻohana paha ma ka home.
- He mea nui loa e haʻi i kāu kauka e pili ana i kāu mau maʻi allergies a pau a inā paha ʻoe e hāpai ana a i ʻole e hoʻāʻo ana e hāpai ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau.
- ʻOiai e lawe ana i kēia lāʻau lapaʻau, e lawe i nā mea hoʻopihapiha wikamina A e like me ke kauoha a kāu kauka a hōʻike i nā loli i kou ʻike.Inā hana ʻia kēia, he mea nui e hoʻomaopopo koke.
- Inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi e like me ka pehu ʻana o ka maka a i ʻole ka paʻakikī o ka hanu ʻana, e ʻimi koke i ke kōkua lapaʻau.
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