Ua ʻike ʻia kāu keiki me Duchenne Muscular Dystrophy (DMD)? A ua haʻi ʻia anei iā ʻoe e pili ana i ka lāʻau lapaʻau ʻo Eteplirsen ma ke ʻano he lāʻau lapaʻau kūikawā no ia mea? He mea maʻamau ke manaʻo iki i ka makaʻu, ka hopohopo, a me ke kānalua ke lohe ʻoe i kahi inoa e like me kēia, ʻoiai inā pili ia i kāu keiki. Akā, mai makaʻu. ʻO ka ʻike ko mākou ikaika nui loa. I kēia lā, e kamaʻilio kākou ma ke ʻano maʻalahi a aloha e pili ana i ke ʻano o Eteplirsen, kāna hana, a me nā mea āu e pono ai e ʻike e pili ana iā ia ma ke ʻano he makua.
He aha ke ʻano lāʻau lapaʻau maoli ʻo Eteplirsen?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau kūikawā ʻo Eteplirsen i hoʻohana ʻia e mālama i kahi maʻi i kapa ʻia ʻo Duchenne Muscular Dystrophy (DMD) . Eia naʻe, ʻaʻole ia e hāʻawi ʻia i nā keiki āpau me DMD. Hāʻawi wale ʻia ia i nā keiki i loaʻa kahi mutation gene kikoʻī .
E noʻonoʻo e pili ana i ia mea, ua like nā ʻiʻo o ko kākou kino me nā paia o kahi hale. Pono kēia mau paia i ka sima e hoʻomau i ko lākou ikaika. Pēlā nō, no ka hoʻomau ʻana i ko kākou mau ʻiʻo i ka ikaika a me ke olakino, pono kākou i kahi protein kūikawā i kapa ʻia ʻo dystrophin . Loaʻa i nā keiki me DMD kahi kīnā i ka hana ʻana o kēia protein dystrophin.
ʻO ka hana a ka lāʻau lapaʻau ʻo Eteplirsen, ʻo ia ke kōkua i ka protein dystrophin, ka mea i hoʻopau ʻia e ke kīnā genetic, e hana hou, i kekahi ʻano. ʻO ia hoʻi, kōkua kēia lāʻau i nā ʻiʻo e hana i kekahi o ka protein dystrophin a lākou e pono ai.
ʻO ka mea nui, ʻaʻole ʻo Eteplirsen kahi lāʻau lapaʻau no DMD. Eia nō naʻe, hiki iā ia ke hoʻolohi i ka wikiwiki o ka nāwaliwali o nā ʻiʻo i hoʻokumu ʻia e ka maʻi, e hāʻawi ana i kahi hōʻoluʻolu i ke keiki.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana o kāu keiki i kēia lāʻau lapaʻau, he mea nui e wehewehe pono ʻoe i kēia mau ʻoiaʻiʻo i kāu kauka . Mai hūnā i kekahi mea, no ka mea, he mea nui kēia ʻike a pau no ka palekana o ke keiki.
- Nā maʻi ʻaleka: E hōʻoia e haʻi i kāu keiki inā he maʻi ʻaleka ko lākou iā Eteplirsen a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā kala, a i ʻole nā mea hoʻomalu.
- Hāpai a hoʻāʻo paha e hāpai: ʻAʻole paha e pili kēia i nā keiki, no ka mea, hāʻawi pinepine ʻia kēia lāʻau lapaʻau i nā keiki. Eia nō naʻe, inā e mālama ʻia ana kekahi kanaka ʻōpio no kekahi kumu, pono e hoʻomaopopo ʻia ke kauka inā ua hāpai ʻo ia a i ʻole e hoʻāʻo ana e hāpai.
- Ka hānai waiū ʻana: Inā he makuahine hānai ka mea e mālama ʻia ana, pono e hoʻomaopopo ʻia ke kauka.
Pehea e hāʻawi ai i kēia lāʻau lapaʻau i kahi keiki?
ʻAʻole kēia he lāʻau lapaʻau home. He inikini ʻo Eteplirsen i loko o kahi aa. Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau, ma lalo o ka nānā piha ʻana o ke kauka a i ʻole nā limahana kahu maʻi i aʻo ʻia. No laila, ʻaʻohe pono e hopohopo e pili ana i ka palekana o ke keiki.
ʻO ka maʻamau, hāʻawi ʻia kēia lāʻau pale i hoʻokahi manawa i ka pule. He mea nui loa ka hahai ʻana i nā lā a me nā manawa kikoʻī o ka mālama ʻana.
He aha inā e hala wau i hoʻokahi lā e lawe ai i kaʻu lāʻau lapaʻau?
I mea e loaʻa ai ka hopena maikaʻi loa mai kēia lāʻau lapaʻau, he mea nui e loaʻa nā lāʻau pale i ka manawa kūpono. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke lawe i kāu keiki i ka haukapila i ka lā i hoʻonohonoho ʻia, e kelepona koke i kāu kauka a i ʻole ke keʻena lapaʻau a e haʻi iā lākou. E aʻo aku lākou iā ʻoe i ka mea e hana ai ma hope.
He aha inā lawe nui wau i ka lāʻau lapaʻau?
Hāʻawi ʻia kēia ma kahi haukapila, no laila ʻaneʻane ʻole ka manawa kūpono o kēia. Eia nō naʻe, i ka wā o kahi pilikia, inā manaʻo ʻoe he overdose, e kelepona koke i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui . A i ʻole e lawe i ke keiki i ka ʻOihana Pilikia o ka haukapila kokoke loa (ETU) .
Nā mea e noʻonoʻo ai i ka wā o ka mālama ʻana
ʻAʻohe pilina i ʻike ʻia me kēia lāʻau lapaʻau i kēia manawa. Eia nō naʻe, no ka palekana, e hāʻawi i kāu kauka i kahi papa inoa piha o nā lāʻau lapaʻau ʻē aʻe (me nā huaora, Panadol), nā lāʻau lapaʻau kuʻuna, nā huahana lāʻau a i ʻole nā mea hoʻohui e lawe nei kāu keiki.
Ma loko o ka lāʻau lapaʻau, e nānā pono ke kauka i ke kūlana o ke keiki. ʻO ia hoʻi, e nānā mau lākou i ka ikaika o nā ʻiʻo o ke keiki, ka neʻe ʻana, a me ke olakino holoʻokoʻa.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki iā Eteplirsen ke hana i kekahi mau hopena ʻaoʻao. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau. He mea nui e makaʻala i kēia mau mea. E hoʻokaʻawale kākou i kēia mau hopena ʻaoʻao i ʻelua mau ʻano.
| Ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i kāu kauka | |
| Nā hopena alerika koʻikoʻi |
Inā ʻike ʻoe i kekahi o kēia mau mea, he pilikia ia. E ʻimi koke i ke kōkua lapaʻau. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Ka luaʻi ʻana | Ka luaʻi ʻana ma hope o ka lawe ʻana i ka lāʻau. |
| ʻEha poʻo | ʻEha poʻo iki a kaulike. |
| Kuke | He ʻū hou a i ʻole ka ʻoi ʻana o ka ʻū e kū nei. |
| Pōʻino a me ka nalowale o ke kaulike | ʻO ka poniuniu a me ka paʻakikī i ka mālama ʻana i ke kaulike i ka wā e hele ana a kū ana paha. |
Inā loaʻa i kāu keiki kekahi mau hōʻailona ʻē aʻe i ʻōlelo ʻole ʻia ma kēia papa inoa, e hoʻomaopopo i kāu kauka e pili ana iā lākou. Mai hoʻowahāwahā i kekahi mea.
Leka Lawe-Home
- He lāʻau lapaʻau kūikawā ʻo Eteplirsen no nā keiki me Duchenne Muscular Dystrophy (DMD) a me kahi hoʻololi genetic kikoʻī .
- ʻOiai ʻaʻole kēia he lāʻau lapaʻau no ka maʻi, hiki iā ia ke kōkua i ka kaohi ʻana i nā hōʻailona a hoʻolohi i ka nāwaliwali o nā ʻiʻo.
- Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila e kekahi limahana lapaʻau i aʻo ʻia ma ke ʻano he inikini i loko o kahi aʻa koko, no laila ʻaʻohe mea e hopohopo ai ma ka home.
- ʻO nā maʻi allergies a ke keiki a i ʻole nā lāʻau lapaʻau ʻē aʻe a ke keiki e lawe neiE hōʻoia e haʻi i kāu kauka e pili ana i ia mea.
- Inā loaʻa iā ʻoe nā hōʻailona maʻi ʻaleka koʻikoʻi e like me ka ʻulaʻula ʻili a me ka pehu ʻana o ka maka ma hope o ka lawe ʻana i ka lāʻau lapaʻau, e ʻimi koke i ke kōkua lapaʻau.
- E lawe i kāu keiki i ka haukapila i ka manawa kūpono , me ka ʻole o ka haʻalele ʻana i nā manawa i hoʻonohonoho ʻia. Inā he mau hopohopo kāu, e kāhea koke aku i ke kauka.
- Inā he mau nīnau hou aku kāu e pili ana i kēia lāʻau lapaʻau, e ʻoluʻolu e nīnau i kāu kauka me ke kānalua ʻole.
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