Loaʻa iā ʻoe ka ʻeha mau, ka mae ʻana, a i ʻole ke kani ʻana ma kou mau lima a me kou mau wāwae? I kekahi manawa ua hana ʻia kēia mau mea e kahi maʻi kūikawā i loko o ko mākou kino. No laila i kēia lā e kamaʻilio mākou e pili ana i ka lāʻau pale Patisiran, kahi i hāʻawi ʻia ma ke ʻano he lāʻau lapaʻau no ia ʻano maʻi. He ʻano lāʻau lapaʻau kūikawā kēia, no laila he mea nui loa ia e ʻike pono ʻoe i kēia.
He aha kēia Patisiran? He aha ke ʻano o ia mea?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau ʻo Patisiran no ka poʻe me kahi maʻi me ka inoa lōʻihi i kapa ʻia ʻo hereditary transthyretin-mediated amyloidosis (hATTR) . E kapa mākou ia he hATTR no ka pōkole.
ʻAe, he aha ka hATTR? He ʻano maʻi hoʻoilina kēia i hoʻoili ʻia ma nā hanauna. Hoʻopuka ko kākou akepaʻa i kahi protein i kapa ʻia ʻo TTR. ʻO ka maʻamau, ʻaʻole kēia he pilikia. Akā i loko o kekahi kanaka me hATTR, pelu pono ʻole kēia protein TTR, hui pū, a waiho iā ia iho ma nā wahi like ʻole o ke kino, ʻoi aku hoʻi a puni nā aʻalolo. Ua like ia me ka lepo e hōʻiliʻili ana i loko o kahi paipu wai. Kāhea mākou i kēia mau waihona amyloid.
Ke hōʻiliʻili kēia protein a puni nā aʻalolo, hōʻino ia iā lākou. ʻO ia ke kumu e ʻike ʻia ai nā hōʻailona i ʻōlelo ʻia ma mua, e like me ka ʻeha, ka mae ʻana, a me ka nalowale o ka ʻike ma nā lālā.
No laila, ʻo ka mea a Patisiran e hana ai, ʻo ia ke kōkua i ka hoʻōki ʻana i ka hana ʻana o kēlā protein TTR hewa. Ua like ia me ka hoʻōki ʻana i ka pilikia ma kahi e hoʻomaka ai. A laila e emi ana nā waihona protein hou, a hoʻomaka mālie nā hōʻailona e kaohi.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
Ma mua o ka hoʻoholo ʻana o kāu kauka e hāʻawi iā ʻoe i kēia lāʻau lapaʻau, aia kekahi mau mea āu e haʻi aku ai iā ia. Mai hūnā i kēia mau mea, no ka mea, he mea nui loa ia no kou palekana.
- E pili ana i kāu mau maʻi allergies: Inā loaʻa iā ʻoe kekahi mau maʻi allergies, ʻaʻole wale i kēia lāʻau lapaʻau Patisiran, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, mea hoʻomalu, a i ʻole kala, e ʻoluʻolu e haʻi mai iā mākou e pili ana.
- Inā hāpai ʻoe a i ʻole e hoʻolālā ana e hāpai: Inā ua hāpai mua ʻoe, ke hoʻāʻo nei e hāpai, a i ʻole he kānalua paha ʻoe e hāpai ana, e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i kēia lāʻau.
- Inā he makuahine hānai waiū ʻoe: Inā ʻoe e hānai waiū ana i kāu pēpē, e hoʻomaopopo i kāu kauka e pili ana i kēlā.
ʻO ka hāʻawi pololei ʻana i kēia ʻike i kāu kauka e kōkua nui iā ia e hāʻawi iā ʻoe i ka lāʻau lapaʻau maikaʻi loa me ka palekana.
Pehea e hiki ai iaʻu ke hāʻawi iā ʻoe i kēia lāʻau lapaʻau?
ʻAʻole ʻo Patisiran he pila āu e lawe ai i ka home. ʻO kēiaHe hoʻokomo ʻana i loko o ke kino. ʻO ke ʻano kēia, ua hoʻokomo mālie ʻia ka lāʻau lapaʻau i loko o kekahi o kou mau aa koko ma o kahi ʻōmole, e like me ka saline.
Hana ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau wale nō. Na ke kauka a kahu maʻi paha i aʻo ʻia e hāʻawi iā ʻoe. No laila, ʻaʻohe mea e hopohopo ai.
He aha ka mea e hana ai inā ʻoe e lawe i ka overdose?
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 kēia lāʻau lapaʻau, 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.
He aha inā e hala wau i ka lā i manaʻo ʻia ai au e lawe i ka lāʻau lapaʻau?
He mea nui loa ka lawe ʻana i kēia lāʻau lapaʻau i nā manawa maʻamau. No laila, e hōʻoia e hele i ka haukapila i nā lā i kuhikuhi ʻia nou. Inā ʻaʻole hiki iā ʻoe ke hele no kekahi kumu pilikia, e kāhea koke i kāu kauka a i ʻole ke keʻena lapaʻau a e hoʻomaopopo iā lākou.
Nā mea kūikawā e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
Aia kekahi mau mea e pono ai ʻoe e makaʻala i ka wā e lawe ana i kēia lāʻau.
1. Nā Hana Hoʻokomo
ʻO kēia ka mea nui loa. Loaʻa paha i kekahi poʻe kekahi mau hopena ke hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano intravenous a i ʻole ma hope koke iho o ka hāʻawi ʻia ʻana. Kāhea mākou i kēia mau hopena infusion . Hiki i kēia mau mea ke komo pū me:
- ʻEha umauma
- Paʻakikī ka hanu ʻana
- Manaʻo e like me ka wili ʻana (vertigo)
- Wela ka manaʻo
I mea e hōʻemi ai i kēia pilikia, hiki i kāu kauka ke hāʻawi iā ʻoe i nā lāʻau lapaʻau ʻē aʻe (e like me ka lāʻau allergy a i ʻole paracetamol) ma kahi o hoʻokahi hola ma mua o ka hāʻawi ʻana iā ʻoe i kēia lāʻau pale. No laila e hahai pono i nā ʻōlelo a kāu kauka. E nānā pono nā limahana lapaʻau i kou kūlana i ka wā e hāʻawi ʻia ai ka lāʻau.
2. Ka loli ʻana o ka ʻike maka
Inā ʻike ʻoe i kekahi loli i kou ʻike, ʻoi aku hoʻi i ka pō, a inā maloʻo kou mau maka, e haʻi koke aku i kāu kauka.
3. Wikamina A
ʻO ka lawe ʻana i kēia lāʻau lapaʻau e hoʻohaʻahaʻa paha i kāu pae wikamina A. He mea nui ka wikamina A no ko kākou ʻike maka a me ke olakino o ka ʻili. No laila, hiki i kāu kauka ke kuhikuhi i kahi mea hoʻohui wikamina A nou e lawe i kēlā me kēia lā. E lawe i ka nui like a kāu kauka e haʻi aku ai iā ʻoe e lawe. He manaʻo maikaʻi nō hoʻi e ʻai i nā meaʻai waiwai i ka wikamina A (e like me ke kāloti, ka ʻuala, ka sipinaki). E kamaʻilio me kāu kauka e pili ana i kēia.
Nā hopena ʻaoʻao e hiki mai ana ma muli o ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, hiki iā Patisiran ke hana i kekahi mau hopena ʻaoʻao. ʻAʻole loaʻa i nā kānaka a pau. Akā he mea nui e makaʻala iā lākou. E hoʻokaʻawale mākou iā lākou i nā ʻano maʻalahi e hoʻomaopopo.
| Ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena maʻi koʻikoʻi | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu, paʻakikī ka hanu ʻana. Inā loaʻa kekahi o kēia mau mea, e ʻimi koke i ke kōkua lapaʻau. |
| Nā Hana Hoʻokomo | ʻEha ka umauma, paʻakikī ka hanu ʻana, pōkole ka hanu, maule, poniuniu. Inā ʻike ʻoe i kekahi o kēia mau hōʻailona i ka wā e lawe ana i ka lāʻau lapaʻau, e haʻi koke aku i ke kauka a i ʻole ke kahu maʻi. |
| Nā hōʻailona o ka nele o ka huaora A | Nā loli i ka ʻike (ʻoi aku ka emi ʻana o ka ʻike pō), nā maka maloʻo, ka ʻili maloʻo, nā maʻi pinepine. E hōʻike i kēia i kāu kauka. |
| Nā mea i maʻa mau ʻole i ka weliweli, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| ʻEha hui | ʻEha hui. |
| Nā ʻūmiʻi ʻiʻo | Ka manaʻo koke ʻana o nā ʻiʻo e wili ʻia ana. |
| ʻeha ka ʻāʻī | ʻeha ka ʻāʻī. |
| ʻŌpū ʻeha | ʻO ka ʻehaʻeha e like me ka ʻeha o ka ʻōpū a me ka nausea. |
ʻAʻole paha e komo pū kēia papa inoa me nā hopena ʻaoʻao āpau. Inā ʻike ʻoe i kekahi mea ʻē, e kamaʻilio me kāu kauka e pili ana i ia mea.
Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?
ʻAʻole i ʻike ʻia nā noiʻi a hiki i kēia manawa he pilikia nui ʻo Patisiran me nā lāʻau lapaʻau ʻē aʻe. Eia nō naʻe, ʻoi aku ka maikaʻi o ka haʻi ʻana i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā huaora a me nā lāʻau lapaʻau).
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Patisiran no kahi maʻi neurological i hoʻokumu ʻia e kahi gene i kapa ʻia ʻo hATTR.
- Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, e hoʻomaopopo pono e haʻi i kāu kauka e pili ana i nā maʻi allergies āu e loaʻa ai a inā paha ʻoe e hāpai ana a hānai waiū paha.
- Inā loaʻa iā ʻoe ka ʻeha o ka umauma a i ʻole ka paʻakikī o ka hanu ʻana i ka wā e loaʻa ana ka lāʻau lapaʻau ma o ka intravenous, e hoʻomaopopo koke i ke limahana lapaʻau. He hopena infusion paha kēia.
- Inā ʻike ʻoe i kekahi mau loli i kou ʻike, e haʻi i kāu kauka e pili ana i ia mea. E lawe i ka mea hoʻohui huaora A e like me ke kauoha a kāu kauka.
- Mai hōʻalo i nā lā i hoʻonohonoho ʻia e lawe ai i kāu lāʻau lapaʻau. Inā he mau pilikia kāu, e ʻoluʻolu e hoʻomaopopo i ke keʻena ma mua.
- Inā he mau nīnau a kānalua paha kāu e pili ana i kēia lāʻau lapaʻau, mai makaʻu e nīnau i kāu kauka.
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