Ua haʻi aku anei kāu kauka iā ʻoe a i ʻole kāu keiki e pili ana i kēia lāʻau lapaʻau i kapa ʻia ʻo Casimersen? A i ʻole ua lohe paha ʻoe i kēia inoa ma kekahi wahi, akā ʻaʻole maopopo iā ʻoe ke ʻano o ia mea, ke kumu o ia mea, a pehea e hana ai? ʻOiaʻiʻo, ʻaʻole kēia he lāʻau lapaʻau i kamaʻilio pinepine ʻia ma ko mākou ʻāina. No laila, he mea maʻamau loa ka loaʻa ʻana o nā nīnau e pili ana i ia mea, e makaʻu iki. No laila, mai makaʻu. I kēia lā, e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau i kapa ʻia ʻo Casimersen, e ʻike i nā pane i nā nīnau āpau āu e noʻonoʻo nei, ma ka ʻōlelo Sinhala āu e maopopo ai.
I ka ʻōlelo maʻalahi, he aha ʻo Casimersen?
He lāʻau lapaʻau kūikawā ʻo Casimersen i hoʻohana ʻia e mālama i kahi maʻi i kapa ʻia ʻo Duchenne muscular dystrophy (DMD) . Ua ʻike ʻia hoʻi ia ma ka inoa inoa ʻo AMONDYS 45.
I kēia manawa, ke noʻonoʻo nei paha ʻoe, he aha ka Duchenne Muscular Dystrophy (DMD)? He maʻi genetic ia, ʻo ia hoʻi, aia ia i ka wā hānau. Hoʻonāwaliwali mālie ia i nā ʻiʻo o ke kino a me ka atrophy. Hoʻopilikia nui kēia maʻi i nā keikikāne.
E noʻonoʻo i nā ʻiʻo o ko kākou kino e like me ka pā pōhaku. Pono kēlā mau pōhaku i kahi papa sima e hoʻopaʻa iā lākou a hoʻopaʻa iā lākou i ka ikaika. Pēlā nō, he mea nui kahi protein kūikawā i kapa ʻia ʻo dystrophin e mālama i nā pūnaewele i loko o ko kākou mau ʻiʻo i ikaika a olakino. I loko o ke kanaka me DMD, ʻaʻole hana ke kino i kēia protein dystrophin, a i ʻole hana iki ia. No laila, e like me ka pā me ka ʻole o ka sima, hoʻomaka mālie nā ʻiʻo e nāwaliwali.
ʻO kēia kahi e komo mai ai kahi lāʻau i kapa ʻia ʻo Casimersen. ʻO ka hana a kēia lāʻau, komo ia i loko o ke kino, hana ma ka pae genetic, a kōkua i ka hoʻonui ʻana i ka hana ʻana o ka protein dystrophin i nalowale. Ke piʻi ka nui o ka dystrophin i loko o ke kino, lohi ka wikiwiki o ka nāwaliwali o nā ʻiʻo, a hiki i ko lākou ikaika ke hoʻomaikaʻi i kekahi ʻano.
ʻO ka mea nui, ʻaʻole kēia he lāʻau lapaʻau no DMD. Eia nō naʻe, hiki iā ia ke kōkua i ka kaohi ʻana i ka pōʻino i nā ʻiʻo i hoʻokumu ʻia e ka maʻi a hoʻomaikaʻi i ke ʻano o ke ola o ka mea maʻi.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, he mea nui e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau ʻo Casimersen. ʻO kēia no ka mea e hoʻohana ke kauka i ka ʻike āu e hāʻawi ai e hoʻoholo ai inā kūpono kēia lāʻau lapaʻau iā ʻoe a inā palekana. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea.
- Maʻi puʻupaʻa: Inā loaʻa iā ʻoe kekahi maʻi puʻupaʻa, e hōʻoia e haʻi i kāu kauka e pili ana i ia mea. Hoʻopau ʻia kēia lāʻau lapaʻau mai ke kino ma o nā puʻupaʻa. No laila, inā ʻaʻole hana pono kou mau puʻupaʻa, pono ʻoe e makaʻala loa.
- Nā Allergies: E haʻi mai iā mākou inā ua loaʻa iā ʻoe kahi allergy iā Casimersen, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a i ʻole kekahi mau kala. He mea nui e haʻi mai iā mākou e pili ana i kekahi mau allergy, ʻoiai nā mea liʻiliʻi e hiki mai ana.
- Hāpai: Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpai, e kamaʻilio me kāu kauka e pili ana i ia mea.
- Inā he makuahine hānai ʻoe: Inā he makuahine hānai ʻoe, e hoʻomaopopo pono i kāu kauka.
Mai hūnā i kēia mau mea. ʻO ka holomua o ka lāʻau lapaʻau a me kou palekana e hilinaʻi ʻia ana i ke ʻano o kou kamaʻilio ākea ʻana me ke kauka.
Pehea e hāʻawi ʻia ai kēia lāʻau i ke kino?
ʻAʻole ʻo Casimersen kahi lāʻau lapaʻau i lawe ʻia ma ke ʻano he pila. Hāʻawi ʻia ia i ke kino ma o ka inikini ʻana i loko o kahi aʻa . Ua kapa ʻia hoʻi kēia ʻo 'Intravenous infusion'.
ʻAʻole kēia he mea hiki iā ʻoe ke hana ma ka home. Hāʻawi wale ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau, ma lalo o ka nānā pololei ʻana a ke kauka, kahu maʻi, a i ʻole ke kauka olakino i aʻo ʻia. No laila, ʻaʻohe mea e hopohopo ai. E hōʻoia lākou ua hāʻawi ʻia ka nui kūpono i ke kino no ka manawa kūpono.
I ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki
ʻOiai he maʻi ka DMD i ʻike ʻia i ka wā kamaliʻi, hāʻawi pinepine ʻia kēia lāʻau lapaʻau i nā keiki. No laila, aia kekahi mau mea e makaʻala nui ai i ka hāʻawi ʻana i kēia lāʻau lapaʻau i kahi keiki. No laila, ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau no kāu keiki, e nīnau i kāu kauka i nā nīnau a pau āu e pili ana i ia mea.
He aha inā lawe nui wau i ka lāʻau lapaʻau?
ʻOiai ua hāʻawi ʻia kēia ma ka haukapila, ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, e manaʻo kākou ua komo kekahi ʻano o kēia lāʻau lapaʻau i loko o ke kino ma mua o ka mea e pono ai. Inā hana ʻia kēlā, pono e hana koke ʻia.
I kahi pilikia, e kelepona koke aku i ke Kikowaena ʻIke ʻAi Poisons Lahui ma ka Halemai Lahui ʻo Colombo . A i ʻole, e lawe koke i ka mea maʻi i ka Emergency Treatment Unit (ETU) kokoke loa i ka haukapila me ka hoʻokaʻulua ʻole.
Hoʻomaopopo koʻikoʻi: E hoʻomanaʻo, no ka mea maʻi wale nō kēia lāʻau. Mai kaʻana like a hāʻawi paha i kēia lāʻau i kekahi no kekahi kumu.
He aha kāu e hana ai inā e poina ʻoe i kahi lāʻau?
No ka loaʻa ʻana o nā hopena maikaʻi loa mai kēia lāʻau lapaʻau, he mea nui loa ia e lawe i kāu mau lāʻau i nā lā i hoʻonohonoho ʻia a me nā manawa i hoʻonohonoho ʻia. Ua hāʻawi aku kāu kauka iā ʻoe i nā lā e hele mai ai e kiʻi i kāu lāʻau lapaʻau. E hōʻoia e hele i kēlā mau lā.
Inā ʻaʻole hiki iā ʻoe ke hele i kāu manawa i hoʻonohonoho ʻia ma muli o ke kumu wikiwiki a hiki ʻole ke pale ʻia, e ʻoluʻolu e kelepona koke aku i kāu kauka a i ʻole ke keʻena lapaʻau kahi āu e mālama ʻia nei.E aʻo aku lākou iā ʻoe i ka mea e hana ai ma hope. Mai hoʻoholo i kāu iho a hōʻole i nā manawa hoʻopaʻa lāʻau.
Aia kekahi mau hopena ʻaoʻao?
E like me nā lāʻau lapaʻau āpau, hiki iā Casimersen ke hana i kekahi mau hopena ʻaoʻao. Eia naʻe, ʻaʻole e ʻike nā kānaka a pau i kēia mau hopena ʻaoʻao a pau. ʻAʻole paha e ʻike kekahi poʻe i kekahi mau hopena ʻaoʻao. ʻO ka mea nui, ʻo ia ka ʻike i ke ʻano o kēia mau hopena ʻaoʻao a me nā mea koʻikoʻi.
I mea e maʻalahi ai ka hoʻomaopopo ʻana, e puʻunaue kākou i kēia mau hopena ʻaoʻao i ʻelua mau ʻāpana.
| 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 alerika | Hiki ke hiki koke mai kēia mau mea. Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, e like me nā ʻulaʻula o ka ʻili, ka maneʻo ma kou kino a pau, ka pehu ʻana o kou maka, nā lehelehe, ke alelo a i ʻole ka puʻu, a i ʻole ka paʻakikī o ka hanu ʻana, e ʻimi koke i ke kōkua lapaʻau. |
| ʻEha puʻupaʻa | Inā ʻike ʻoe i kekahi mau hōʻailona e like me ka emi koke ʻana o ka nui o ka mimi āu e hana ai, ka pehu ʻana ma kou mau kuʻekuʻe wāwae, lima, a i ʻole nā wāwae, e hoʻomaopopo koke i kāu kauka. E nānā pinepine kāu kauka i kēia ma ka hana ʻana i nā hoʻāʻo koko a me ka mimi. |
| Nā hopena ʻaoʻao ʻaʻole ia he mea e hopohopo ai, akā pono e hōʻike ʻia i kāu kauka inā hoʻomau lākou | |
| ʻŪhū a me ka ʻāʻī ʻeha | Hiki ke loaʻa kahi ʻū maʻamau a i ʻole kahi ʻeha iki o ka puʻu. |
| kuni | E manaʻo paha ʻoe i kahi kuni iki. |
| ʻEha poʻo a me ka ʻeha hui | Hiki paha iā ʻoe ke loaʻa i ka ʻeha poʻo a i ʻole ka ʻeha hui. |
| Nā hōʻailona e like me ke anu | Hiki paha iā ʻoe ke ʻike i nā hōʻailona o ke anu, e like me ka ihu wai a me ka ihu paʻa. |
ʻAʻole paha e komo pū kēia papa inoa me nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē a hoʻopilikia paha, mai hilahila e kamaʻilio me kāu kauka e pili ana iā lākou.
Aia kekahi mau pilina me nā lāʻau lapaʻau ʻē aʻe?
E like me ka mea i ʻike ʻia i kēia manawa, ʻaʻole i hōʻike ʻia ʻo Casimersen e hoʻopili nui me nā lāʻau lapaʻau ʻē aʻe.
Eia nō naʻe, i mea e palekana ai, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (me nā lāʻau lapaʻau i kuhikuhi ʻia, nā huaora, nā lāʻau lapaʻau lāʻau, nā lāʻau Ayurvedic, a me nā mea hoʻohui). He mea nui hoʻi e haʻi i kāu kauka inā ʻoe e puhipaka a inu waiʻona paha.
Pehea e mālama ai i ka lāʻau lapaʻau?
ʻAʻole kēia he mea āu e noʻonoʻo ai. No ka mea, ʻaʻole hiki iā ʻoe ke lawe i kēia lāʻau lapaʻau i ka home. ʻOiai ua hāʻawi wale ʻia ma ka haukapila a i ʻole ke keʻena lapaʻau, mālama pono lākou iā ia i ka mahana kūpono.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Casimersen e mālama ai i kahi maʻi genetic i kapa ʻia ʻo Duchenne Muscular Dystrophy (DMD).
- Hana kēia ma ka hoʻonui ʻana i ka hana ʻana o kahi protein i kapa ʻia ʻo dystrophin, kahi i nele i ke kino, a me ka kaohi ʻana i ka nāwaliwali o nā ʻiʻo.
- Hāʻawi ʻia kēia ma ka hoʻokomo ʻana i loko o kahi aa koko, a hana wale ʻia ia ma ka haukapila a i ʻole ke keʻena lapaʻau, ma lalo o ka nānā ʻana a ke kauka.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka i kāu ʻike olakino āpau (ʻoi aku hoʻi nā maʻi puʻupaʻa a me nā maʻi allergies).
- Inā ʻike ʻoe i kekahi mau hōʻailona o ka maʻi ʻaleka koʻikoʻi (ka ʻili ʻulaʻula, ka pehu ʻana) a i ʻole nā hopena ma nā puʻupaʻa (ka emi ʻana o ka mimi, ka pehu ʻana), e hoʻomaopopo koke i kāu kauka.
- E lawe i kāu lāʻau lapaʻau i nā lā a me nā manawa i kuhikuhi ʻia e kāu kauka. Inā loaʻa iā ʻoe kekahi pilikia, e ʻoluʻolu e hoʻomaopopo mai iā mākou ma mua.
- E kamaʻilio ākea me kāu kauka e pili ana i nā nīnau a hopohopo paha āu.
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