Inā loaʻa i kāu keiki ʻo Duchenne Muscular Dystrophy (DMD), ua kamaʻilio paha nā kauka e pili ana i kahi lāʻau pale i kapa ʻia ʻo Viltolarsen (inoa inoa: Viltepso). He mea maʻamau ka hiki ʻana mai o hoʻokahi tausani mau nīnau i ka manawa e like me kēia. He aha ke ʻano o kēia lāʻau lapaʻau? He aha kāna hana maoli? He aha kā mākou e hopohopo ai? I kēia lā, e kamaʻilio mākou e pili ana i kēia mau mea a pau ma ka ʻōlelo maʻalahi a maʻalahi hoʻi e hoʻomaopopo.
He aha ka mea e hana maoli me kēia lāʻau lapaʻau?
I ka ʻōlelo maʻalahi, loaʻa i nā keiki me Duchenne (DMD) kahi pilikia genetic me ka hana ʻana o kahi protein i kapa ʻia ʻo 'Dystrophin', he mea nui ia no ka mālama ʻana i nā ʻiʻo ikaika. ʻO kēia lāʻau lapaʻau, i kapa ʻia ʻo Viltolarsen, kōkua i ke kino e pani i kekahi o nā protein i nalowale. I nā huaʻōlelo ʻē aʻe, kōkua kēia lāʻau lapaʻau i ka mālama ʻana i kekahi hana ʻiʻo.
Eia nō naʻe, he mea nui e hoʻomaopopo ʻaʻole kēia he lāʻau lapaʻau no ka maʻi. Eia kekahi, ʻaʻole hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki āpau me DMD. He kūpono wale nō ia no nā keiki me kahi hoʻololi gene kikoʻī . E hoʻoholo nā kauka inā kūpono kēia lāʻau lapaʻau no kāu keiki ma hope o nā hoʻokolohua.
Nā mea e haʻi aku ai i ke kauka ma mua o ka hāʻawi ʻana i ka lāʻau lapaʻau i kāu keiki
Ma mua o ka hoʻomaka ʻana o kāu keiki i kēia lāʻau lapaʻau, pono ʻoe e kūkākūkā i kēia mau pilikia me kāu kauka. Mai hūnā i kekahi mea, no ka mea, ʻo ka palekana o ke keiki ka mea nui loa.
- E haʻi i kāu keiki inā he maʻi puʻupaʻa kona.
- Inā ua loaʻa iā ʻoe kahi hopena maʻi ʻaleka iā Viltolarsen a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a kala paha ma mua, e ʻoluʻolu e haʻi maopopo mai i kēia.
- He mea nui loa hoʻi e hoʻomaopopo i ke kauka inā he ʻōpiopio ka mea e loaʻa ana i kēia lāʻau lapaʻau, e hoʻāʻo ana e hāpai, hāpai, a hānai waiū paha .
Ma muli o kēia ʻike, e akahele loa ke kauka i ka mālama ʻana i ke keiki.
Pehea e hāʻawi ai i ka lāʻau lapaʻau i kahi keiki?
ʻAʻole kēia he pila āu e lawe ai a i ʻole he lāʻau lapaʻau home. He inikini kēia i loko o kahi aʻa, a ʻoi aku ka pololei , he hoʻokomo ʻana i loko o kahi aʻa . E like me ka hāʻawi ʻana i ka saline, hāʻawi nā mōneka i kēia lāʻau i ke kino.
Hana ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau paha, ma lalo o ka nānā ʻana a nā limahana lapaʻau i aʻo ʻia, no laila ʻaʻohe ou mea e hopohopo ai.
He aha kāu e hana ai inā ʻaʻole ʻoe e hele i kahi manawa hoʻopaʻa lāʻau lapaʻau?
No ka holomua o kēia lāʻau lapaʻau, he mea nui loa e lawe i ke keiki a hāʻawi i ka lāʻau i ka lāʻau ma nā lā a me nā manawa i hāʻawi ʻia e ke kauka.Mai poina i kekahi lāʻau lapaʻau. Inā ʻaʻole hiki iā ʻoe ke hele i kāu lā i hoʻonohonoho ʻia ma muli o kahi pilikia, e kāhea koke i kāu kauka e hoʻomaopopo iā lākou a loaʻa ka ʻōlelo aʻoaʻo no 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 ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā manaʻo ʻoe ua overdose ʻoe, e hele koke i ka Emergency Treatment 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.
Nā hopena ʻaoʻao hiki ke loaʻa
E like me nā lāʻau lapaʻau āpau, hiki iā Viltolarsen 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.
| ʻAno o ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| Nā hōʻailona koʻikoʻi e pono ai ke kōkua koke ʻana o ke kauka | |
| Nā hopena alerika | Inā ʻike ʻoe i nā hōʻailona e like me ka ʻulaʻula o ka ʻili, ka maneʻo nui, ka pehu ʻana, ka paʻakikī o ka hanu ʻana, a i ʻole ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo, e hoʻomaopopo koke i kāu kauka. |
| Nā hōʻailona o ka hōʻeha o ka puʻupaʻa | Inā ʻike ʻoe i kahi loli i ke alapine (frequency) a i ʻole ka nui o ka mimi ʻana, ka paʻakikī o ka mimi ʻana, a i ʻole kahi loli i ke kala o kou mimi, e hoʻomaopopo koke i kāu kauka. |
| ʻO nā hōʻailona i maʻa mau ʻaʻole koʻikoʻi, akā pono e hōʻike i ke kauka inā hoʻomau lākou | |
| Nā hopena ʻaoʻao liʻiliʻi |
Hoʻopau pinepine kēia i loko o kekahi mau lā, akā inā hoʻomau lākou a inā ʻoluʻolu ʻole ke keiki, e haʻi i ke kauka. |
Aia i loko o kēia papa inoa kekahi mau hopena ʻaoʻao maʻamau. Inā ʻike ʻoe i kekahi mea ʻē i kāu keiki, mai hoʻokaʻulua i ke kamaʻilio ʻana me kāu kauka e pili ana i ia mea.
Aia kekahi mau pilina me nā lāʻau lapaʻau ʻē aʻe?
Ma muli o nā hoʻokolohua o kēia manawa, ʻaʻohe hōʻike o nā lāʻau ʻē aʻe e launa pū me ka lāʻau pale Viltolarsen.
Eia nō naʻe, ʻoi aku ka maikaʻi o ka hāʻawi ʻana i kāu kauka i kahi papa inoa piha o nā lāʻau lapaʻau ʻē aʻe a kāu keiki e lawe nei (nā lāʻau lapaʻau no nā kūlana ʻē aʻe, nā huaora, nā lāʻau lapaʻau kuʻuna, nā mea hoʻohui meaʻai). E kōkua kēia i ka pale ʻana i nā pilikia pono ʻole mai ka hanana ʻana.
Leka Lawe-Home
- He lāʻau lapaʻau ʻo Viltolarsen e kōkua ai i ka kaohi ʻana i ke kūlana o Duchenne muscular dystrophy (DMD), akā ʻaʻole ia he lāʻau lapaʻau piha .
- Hāʻawi wale ʻia kēia lāʻau lapaʻau i nā poʻe maʻi me kahi mutation genetic kikoʻī .
- He iniki kēia i hāʻawi ʻia i loko o kahi aa koko, a hāʻawi wale ʻia e nā limahana lapaʻau i aʻo ʻia ma ka haukapila a i ʻole ke keʻena lapaʻau .
- Inā loaʻa i kāu keiki ka maʻi puʻupaʻa a i ʻole nā maʻi ʻē aʻe , e haʻi pono i ke kauka ma mua o ka hoʻomaka ʻana i ka lāʻau.
- Inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi e like me ka pehu ʻana o ka maka, ka paʻakikī o ka hanu ʻana, a i ʻole ka loli ʻana o ka nui o ka mimi , e ʻimi koke i ke kōkua lapaʻau .
- He mea nui loa ia e lawe i kāu mau lāʻau i ka manawa kūpono, a mai makaʻu e nīnau i kāu kauka i nā nīnau āu e loaʻa ai.
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