Loaʻa iā ʻoe a i ʻole kekahi o kou ʻohana kahi maʻi genetic laha ʻole i kapa ʻia ʻo hATTR? Ua kuhikuhi anei kāu kauka iā ʻoe i kahi lāʻau pale i kapa ʻia ʻo Inotersen ma ke ʻano he lāʻau lapaʻau no nā pilikia neurological e loaʻa mai ana mai ia mea? No laila i kēia lā e kamaʻilio maopopo mākou e pili ana i kēia lāʻau lapaʻau, pehea e hoʻohana ai, a me nā mea e pono ai mākou e makaʻala. ʻOiai he lāʻau lapaʻau paʻakikī iki kēia, he mea nui loa ka loaʻa ʻana o ka ʻike maikaʻi iā ia.
He aha kēia lāʻau lapaʻau i kapa ʻia ʻo Inotersen?
I ka ʻōlelo maʻalahi, ʻo Inotersen kahi lāʻau lapaʻau i hoʻohana ʻia e mālama i ka hōʻino ʻana o ke aʻalolo i nā poʻe maʻi me kahi kūlana genetic kikoʻī i kapa ʻia ʻo hereditary transthyretin-mediated amyloidosis (hATTR) . Kūʻai pinepine ʻia ia ma lalo o ka inoa inoa ʻo Tegsedi.
I kēia manawa, e nānā kākou i ke ʻano o kēia maʻi i kapa ʻia ʻo hATTR. He maʻi laha ʻole kēia i hoʻoili ʻia mai kēlā hanauna a i kēia hanauna ma o nā genes. Ma muli o nā mutations maʻamau ʻole i loko o kahi protein i kapa ʻia ʻo transthyretin, i hana ʻia i loko o ke akepaʻa o ko kākou kino, hōʻiliʻili kēia protein a waiho i nā wahi like ʻole o ke kino, ʻoi aku hoʻi i loko o ka ʻōnaehana nerve. ʻO kēia mau waihona (nā waihona amyloid) e hōʻino i nā aʻalolo a hiki ke hoʻoulu i ka maneʻo o nā lālā, ka ʻeha, ka nāwaliwali, ka paʻakikī i ka hele wāwae, a hiki ke hoʻopilikia i ka puʻuwai a me nā puʻupaʻa.
No laila, ʻo ka hana a ka lāʻau pale Inotersen, ʻo ia ke kāohi i ka hana ʻana o kēlā protein ʻano ʻē a hōʻemi i ka hōʻino hou ʻana i nā aʻalolo. ʻAʻole kēia he lāʻau lapaʻau no ka maʻi, akā kōkua nui ia i ka kāohi ʻana i ka holomua o ka maʻi, ʻo ia hoʻi, ka ʻino ʻana o ka maʻi.
E hoʻomanaʻo, hiki ke hoʻohana ʻia kēia lāʻau lapaʻau no nā kūlana olakino ʻē aʻe e like me ke kuhikuhi a kāu kauka. No laila e hahai mau i nā ʻōlelo a kāu kauka.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
Ma mua o kou hoʻomaka ʻana i ka lāʻau lapaʻau me Inotersen, he mea nui e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha. E hōʻoia e haʻi iā lākou e pili ana i:
- Maʻi puʻupaʻa: Inā loaʻa iā ʻoe a i ʻole ua loaʻa iā ʻoe kekahi maʻi puʻupaʻa.
- Nā pilikia koko: Inā loaʻa iā ʻoe kahi maʻi e hōʻemi ana i ka helu o nā ʻulaʻula, nā keʻokeʻo, a i ʻole nā platelet i loko o kou koko. He mea nui loa kēia no ka mea hiki i kēia lāʻau lapaʻau ke hoʻopilikia i kāu helu platelet.
- Nā Allergies: Inā ua loaʻa iā ʻoe kahi hopena allergies iā Inotersen, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a i ʻole nā mea hoʻoluʻu.
- Hāpai: Inā hāpai ʻoe, a i ʻole ke manaʻolana nei e hāpai i ka wā e hiki mai ana.
- Ka hānai ʻana: Inā he makuahine ʻoe e hānai waiū ana i kāu pēpē.
Ma muli o kēia ʻike, e hoʻoholo kāu kauka inā kūpono kēia lāʻau lapaʻau iā ʻoe a me nā mea palekana hou aʻe āu e pono ai e lawe i ka wā o ka mālama ʻana.
Pehea e pono ai iaʻu ke hoʻohana i ka lāʻau lapaʻau?
He inikini kēia ma lalo o ka ʻili. Hāʻawi pinepine ʻia i hoʻokahi manawa i ka pule.
- Hoʻomaʻamaʻa: E hōʻike maopopo aku kāu kauka a i ʻole ke kahu maʻi i aʻo ʻia iā ʻoe pehea e hoʻomākaukau ai i kēia lāʻau pale a pehea e hoʻokomo ai iā ʻoe iho ma ka home. Mai hopohopo, he maʻalahi loa ia ke maʻa ʻoe iā ia.
- E hahai i nā kuhikuhi: E lawe i ka lāʻau lapaʻau e like me ke kuhikuhi ʻana, i nā manawa kūpono, a mai lawe ʻoi aku ma mua o ka nui i kauoha ʻia.
- Ke hoʻolei ʻana i nā nila: Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala. Pono e waiho ʻia i loko o kahi pahu ʻoi kūikawā. Inā ʻaʻohe āu, hiki iā ʻoe ke kiʻi i hoʻokahi mai kāu kauka a i ʻole ka haukapila.
- Ka nui loa o ka lāʻau lapaʻau: Inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, mai hopohopo a kāhea koke aku i ke Kikowaena ʻIke ʻAihue Lahui ma ka Halemai Lahui ʻo Colombo, a i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
- Inā ʻoe e poina i kahi lāʻau lapaʻau: Inā ʻoe e poina i kahi lāʻau lapaʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. Akā inā ʻaʻole i ʻelua lā a hiki i kāu lāʻau lapaʻau aʻe, e kāpae i ka lāʻau lapaʻau i poina. E lawe wale i ka lāʻau lapaʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe pālua i ka lāʻau lapaʻau.
Nā hopena ʻaoʻao hiki ke loaʻa i ka wā e lawe ai i ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, hiki iā Inotersen ke hana i kekahi mau hopena ʻaoʻao. Hiki i kekahi o kēia mau mea ke koʻikoʻi, no laila he mea nui e makaʻala iā lākou.
| Ka hopena ʻaoʻao | Nā hiʻohiʻona e makaʻala ai |
|---|---|
| Inā loaʻa iā ʻoe kēia mau hōʻailona, e hele koke i kāu kauka a i ʻole ETU. | |
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, lehelehe a i ʻole ke alelo, paʻakikī ke hanu. |
| Ke kahe koko ʻano ʻē | ʻO ka ʻōpala ʻeleʻele a koko paha, ka mimi ʻulaʻula a ʻeleʻele paha, ka luaʻi ʻana i kahi mea e like me ke kofe lepo, nā kiko ʻulaʻula ma ka ʻili, ke kahe koko ʻano ʻē mai nā ʻāʻī, ka ihu, a i ʻole nā maka. |
| Nā hōʻailona o ka hahau ʻana | Nā loli o ka ʻike, huikau, paʻakikī i ka ʻōlelo ʻana a i ʻole ka hoʻomaopopo ʻana, ʻeha poʻo nui, mae koke a nāwaliwali paha ma ka maka, lima a i ʻole ka wāwae, paʻakikī i ka hele wāwae, poniuniu. |
| Nā hōʻailona o ka hōʻino ʻana o ka puʻupaʻa | Ka paʻakikī i ka mimi ʻana a i ʻole kahi loli o ka nui o ka mimi e puka mai ana. |
| Nā hōʻailona o ka hōʻino ʻana o ke akepaʻa | Mimi melemele ʻeleʻele a ʻeleʻele paha, melemele o nā maka a i ʻole ka ʻili, luhi ke ʻano, kuni, ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, luaʻi. |
| E haʻi i kāu kauka inā hoʻomau kēia mau mea a hoʻopilikia paha. | |
| Nā hopena ʻaoʻao maʻamau | ʻEha poʻo, ʻeha ami, ʻeha ʻiʻo, nausea, luaʻi, luhi, ʻulaʻula, maneʻo, a ʻeha paha ma kahi i ini ʻia. |
Nā mea ʻē aʻe e launa pū me kēia lāʻau lapaʻau
Hiki i nā lāʻau lapaʻau ʻē aʻe āu e lawe ai ke launa pū me Inotersen, e hoʻopilikia ana i kona pono a i ʻole nā hopena ʻaoʻao. No laila, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe ai. E akahele loa me kēia mau lāʻau lapaʻau:
- Nā lāʻau hoʻokahe koko: Nā lāʻau lapaʻau e like me warfarin, apixaban, clopidogrel, a me ka aspirin. ʻO ka lawe ʻana i kēia mau mea me Inotersen e hoʻonui paha i ka pilikia o ke kahe ʻana o ke koko.
- Nā lāʻau hoʻopau ʻeha (NSAID): Nā lāʻau lapaʻau e like me ka ibuprofen a me ka naproxen. Hiki i kēia ke hoʻopilikia i nā puʻupaʻa a hoʻonui i ka pilikia o ke kahe ʻana o ke koko.
- ʻO nā lāʻau lapaʻau ʻē aʻe e hiki ke hoʻopilikia i nā puʻupaʻa: kekahi mau antibiotics a me nā diuretics (nā lāʻau lapaʻau e hoʻonui ai i ka mimi).
- Wikamina A: Hiki ke emi iho kāu mau pae wikamina A i ka wā e lawe ai i kēia lāʻau. No laila, he mea nui loa ka loaʻa ʻana o ka lawa ʻana o ka wikamina A.E kamaʻilio me kāu kauka e pili ana i nā meaʻai a me nā wikamina āu e ʻai ai, a e lawe i kahi mea hoʻopihapiha wikamina A inā pono.
ʻAʻole paha e komo pū kēia papa inoa me nā pilina āpau. No laila e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau, nā lāʻau lapaʻau lāʻau, nā huaora, a me nā mea hoʻohui āu e lawe nei. E hōʻoia e haʻi i kāu kauka inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau ʻē aʻe.
Leka Lawe-Home
- He lāʻau lapaʻau ʻo Inotersen i hoʻohana ʻia e mālama i ka hōʻino ʻana o ke aʻalolo i hoʻokumu ʻia e kahi ʻano genetic kikoʻī i kapa ʻia ʻo hATTR.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mau kūlana olakino āpau (ʻoi aku hoʻi nā mea pili i nā puʻupaʻa a me ke koko) a me nā maʻi allergies.
- E aʻo pehea e hoʻokomo pololei ai i ka lāʻau pale. E hoʻolei pono i nā nila a me nā syringe i hoʻohana ʻia.
- E ʻimi koke i ke kōkua lapaʻau inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi, e like me ke kahe koko ʻokoʻa, nā hōʻailona o ka hahau ʻana, a i ʻole kahi hopena maʻi koʻikoʻi.
- Nou wale nō kēia lāʻau lapaʻau. Mai kaʻana like me kekahi no kekahi kumu.
- E mālama mau i ka launa pū ʻana me kāu kauka a hele i nā hoʻokolohua a me nā manawa i hoʻonohonoho ʻia.
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