Loaʻa iā ʻoe ka hATTR (hereditary transthyretin-mediated amyloidosis), kahi maʻi genetic laha ʻole? Ua luhi ʻoe i ka ʻeha mau, ka mae ʻana, a i ʻole ka nalowale o ka manaʻo ma kou mau lima a me kou mau wāwae? Inā pēlā, ua haʻi aku paha kāu kauka iā ʻoe e pili ana i kahi lāʻau pale i kapa ʻia ʻo Inotersen. I kēia lā, e kamaʻilio pōkole kākou e pili ana i ke ʻano o kēia lāʻau, kāna hana, a me nā mea e pono ai ʻoe e makaʻala i ka wā e hoʻohana ai.
He aha ke ʻano lāʻau lapaʻau ʻo Inotersen?
I ka ʻōlelo maʻalahi, ʻo Inotersen kahi lāʻau pale i hāʻawi ʻia e mālama i nā pilikia aʻalolo i ka poʻe me ke ʻano i kapa ʻia ʻo hATTR . I loko o kēia maʻi hATTR, hōʻiliʻili kahi protein i hana ʻia i loko o ko mākou kino ma mua o ka mea e pono ai a hōʻino i nā aʻalolo. Hana kēia lāʻau lapaʻau ma ka hōʻemi ʻana i ka hōʻiliʻili ʻana o kēlā protein i loko o ke kino . A laila, e hoʻomaka mālie nā hōʻailona āu e ʻike ai, e like me ka ʻeha, ka mae ʻana, a me ka nalowale o ka manaʻo i kou mau lālā. Hiki ke loaʻa kēia lāʻau lapaʻau ma ka mākeke ma lalo o ka inoa ʻo `(Tegsedi)`.
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 e lawe i kēia lāʻau lapaʻau, aia kekahi mau mea āu e kūkākūkā ai me kāu kauka. He mea nui loa kēia ʻike no kou palekana.
- Inā he maʻi puʻupaʻa kou: E haʻi mai iā mākou e pili ana i nā pilikia puʻupaʻa.
- Inā he haʻahaʻa kou helu koko: No ka laʻana, inā ua ʻike mua ʻia ʻoe me nā keʻokeʻo keʻokeʻo haʻahaʻa, nā keʻokeʻo koko ʻulaʻula, a i ʻole nā platelets, e hoʻomaopopo i kāu kauka.
- Inā he maʻi ʻaleka kou: E haʻi mai iā mākou inā he maʻi ʻaleka ʻoe i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha, ʻaʻole wale iā Inotersen.
- Inā hāpai ʻoe a i ʻole e hoʻolālā ana e hāpai: He mea nui e haʻi i kāu kauka e pili ana i kēia, no ka mea, pono e mālama pono ʻia me nā lāʻau lapaʻau i kēia manawa.
- Inā he makuahine hānai waiū ʻoe: He mea nui e makaʻala i kēia ʻoiai i ka wā e hānai waiū ana.
Pehea e hoʻohana ai i ka lāʻau pale?
He inikini subcutaneous kēia. Mai hopohopo, e hōʻike pololei kāu kauka a kahu maʻi paha iā ʻoe pehea e inikini ai iā ʻoe iho. He mea nui loa e lawe i ka inikini e like me ka ʻōlelo a kāu kauka iā ʻoe, i ka lā kūpono, a me ka nui kūpono. E hoʻomau i ka hoʻohana ʻana a hiki i kona haʻi ʻana iā ʻoe e hoʻōki.
He mea nui loa: 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, e nīnau i kāu kauka pehea e loaʻa ai.
E loaʻa iā ʻoe kahi pepa kuhikuhi kūikawā "(MedGuide)" me kēia lāʻau lapaʻau. E hoʻomanaʻo e heluhelu pono i kēlā me kēia manawa.
He aha kāu e hana ai inā lawe nui ʻoe i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, e hele koke i ka Halemai Pilikia (ETU) kokoke loa. A i ʻole e kelepona i ke Kikowaena ʻIke ʻAi ʻona Lahui ma ka Halemai Lahui ʻo Colombo .
He aha inā e hala iaʻu kahi mahele o ka lāʻau lapaʻau?
E lawe i ka lāʻau i poina i ka wā e hoʻomanaʻo ai ʻoe. Eia nō naʻe, inā ʻoi aku ka liʻiliʻi o kāu lāʻau aʻe ma mua o ʻelua lā, e kāpae i ka lāʻau i poina a lawe i kāu lāʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i ʻelua mau lāʻau i ka manawa hoʻokahi, ʻo ia hoʻi, he lāʻau pālua.
Nā mea ʻē aʻe e launa pū me kēia lāʻau lapaʻau
Pono ʻoe e makaʻala loa inā ʻoe e lawe ana i nā lāʻau lapaʻau ʻē aʻe i ka wā e lawe ana i kēia lāʻau lapaʻau, no ka mea hiki iā lākou ke launa pū. E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau, nā huaora, a me nā lāʻau lapaʻau āu e lawe nei.
Aia ma lalo iho kekahi mau lāʻau lapaʻau e hiki ke launa pū me kēia lāʻau.
| Māhele lāʻau lapaʻau | Nā Laʻana |
|---|---|
| Nā mea hoʻokahe koko | ʻO Warfarin, Enoxaparin, ʻAspirin, Clopidogrel, Apixaban, Rivaroxaban |
| Nā lāʻau hoʻopau ʻeha (NSAID) | Nā lāʻau lapaʻau e like me Ibuprofen a me Naproxen |
| Nā lāʻau antibiotic a me nā lāʻau ʻē aʻe no kekahi mau maʻi | ʻAcyclovir, Gentamicin, Vancomycin, Amphotericin B |
| Nā lāʻau lapaʻau | Nā lāʻau lapaʻau e like me Furosemide |
| Nā lāʻau lapaʻau ʻē aʻe | ʻO Cisplatin, Cyclosporine, Zoledronic acid, Pamidronate |
ʻAʻole i piha kēia papa inoa, no laila ʻoi aku ka maikaʻi o ka haʻi ʻana i kāu kauka e pili ana i nā mea āpau āu e lawe ai.
Nā mea e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
- E ʻike pinepine i kāu kauka: E nānā pinepine me kāu kauka e ʻike i kou ʻano a inā e hana ana ka lāʻau lapaʻau. E haʻi iā lākou inā e ʻoi aku ka ʻino o kāu mau hōʻailona a ʻaʻole paha.
- E makaʻala me ka wikamina A: Hiki i kāu kauka ke haʻi aku iā ʻoe e lawe i nā mea hoʻohui wikamina A i ka wā e lawe ana i kēia lāʻau. ʻO kēia no ka mea hiki i kēia lāʻau ke hōʻemi i ka pae o ka wikamina A i loko o ke kino. E lawe i nā mea hoʻohui wikamina A e like me ka ʻōlelo a kāu kauka. Eia kekahi, e kamaʻilio me ia e pili ana i kāu ʻai.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke hana i nā hopena ʻaoʻao i kekahi poʻe. He koʻikoʻi kekahi, he mea maʻamau kekahi. He mea nui e makaʻala i kēia mau mea.
| Ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā mea e haʻi koke aku i kāu kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| ʻEha puʻupaʻa | Ka emi ʻana o ka mimi i hoʻopuka ʻia, ka pehu ʻana o nā kuʻekuʻe wāwae, nā lima, a i ʻole nā wāwae. |
| ʻEha o ke akepaʻa | ʻEha ma ka ʻaoʻao ʻākau o ka ʻōpū, nalowale ka makemake e ʻai, nausea, melemele o ka ʻili a i ʻole nā maka, mimi melemele/ʻeleʻele. |
| Ke kahe koko ʻana a i ʻole ka ʻeha ʻana ma ke ʻano maʻamau | Manaʻo e like me ka maʻalahi o ka ʻili e palaha, e kahe ana ke koko mai ka ihu a i ʻole nā ʻāʻī. |
| Hahau | Ka mae koke ʻana/ka mae ʻana o kekahi ʻaoʻao o ka maka, ka lima, a i ʻole ka wāwae, ka paʻakikī i ka ʻōlelo ʻana, ka paʻakikī i ka hele ʻana, ka ʻeha poʻo nui. |
| Inā hoʻomau a hoʻopilikia paha, e haʻi i kāu kauka. | |
| ʻEha a me ka ʻulaʻula ma kahi i hoʻokomo ʻia | Ka hopena o ka wahi inikini |
| ʻEha poʻo | |
| Ka luaʻi | |
| kuni | |
| Luhi | |
Pehea ʻoe e mālama ai i ka lāʻau lapaʻau?
He mea nui loa ka mālama pono ʻana i kēia lāʻau.
- ʻO ke ala maikaʻi loa: E mālama i loko o ka pahu hau. Akā, mai hoʻopaʻahau. E mālama i loko o ka pahu kumu a hiki i ka wā e hoʻohana ai.
- ʻAno hana ʻē aʻe: Hiki iā ʻoe ke mālama i kēia lāʻau lapaʻau ma ka mahana o ka lumi (ma waena o 20-25 Celsius) a hiki i 6 mau pule. Eia nō naʻe, inā hana ʻoe pēlā, pono ʻoe e pale iā ia mai ka mālamalama a me ka wela. E hoʻolei i nā koena ma hope o 6 mau pule.
- E mālama pono iā ia mai ka hiki ʻana aku o nā keiki a me nā holoholona.
Mai hoʻolei i nā lāʻau lapaʻau i pau ka manawa a i ʻole i hoʻohana ʻole ʻia i loko o ka ʻōpala a i ʻole i loko o ka lua. E nīnau i kāu kauka pehea e hoʻolei aku ai iā lākou me ka palekana.E haʻi aku ʻo ia iā ʻoe i ke ala maikaʻi loa e hana ai.
Leka Lawe-Home
- He lāʻau pale ʻo Inotersen no nā maʻi neurological i hoʻokumu ʻia e kahi maʻi i kapa ʻia ʻo hATTR.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i nā maʻi ʻē aʻe āu e loaʻa nei a me nā lāʻau lapaʻau āpau āu e lawe nei.
- E aʻo pehea e hoʻokomo pono ai i ka lāʻau pale. E hoʻolei aku i nā nila i hoʻohana ʻia me ka palekana.
- Inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi, e like me nā maʻi allergies, nā pilikia o ka puʻupaʻa a i ʻole ke akepaʻa, a i ʻole ka maʻi lolo, e haʻi koke aku i kāu kauka.
- E mālama i ka lāʻau lapaʻau i loko o ka pahu hau a i ʻole e like me ke kuhikuhi a kāu kauka.
- Inā he mau nīnau kāu e pili ana i kēia lāʻau lapaʻau, mai makaʻu e nīnau i kāu kauka.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo