Inā loaʻa i kāu keiki ka Duchenne Muscular Dystrophy (DMD), ua lohe paha ʻoe i ka inoa ʻo Casimersen. ʻOiai he lāʻau lapaʻau hou ia, nui paha kāu mau nīnau e pili ana i ia mea. He aha ke ʻano o ia lāʻau lapaʻau, pehea e hana ai, a he aha nā hana palekana e hana ai i ka hāʻawi ʻana i kāu keiki? Mai hopohopo, e kamaʻilio mākou e pili ana i kēlā mau mea āpau i kēia lā me ka maʻalahi a me ka maopopo.
He aha maoli ʻo Casimersen?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau ʻo Casimersen i hāʻawi ʻia i nā keiki me Duchenne Muscular Dystrophy (DMD) a me kahi hoʻololi gene kikoʻī . ʻAʻole ia he lāʻau lapaʻau no ka maʻi, akā kōkua ia i ka kaohi ʻana i ka nāwaliwali o nā ʻiʻo i hoʻokumu ʻia e ka maʻi.
I kēia manawa, e nānā kākou pehea e hana ai kēia. E noʻonoʻo i nā ʻiʻo o ko kākou kino e like me ka pā i hana ʻia me nā piliki. Loaʻa i ko kākou kino kahi protein e like me ka mortar e hoʻopaʻa ai i kēia mau piliki a hoʻopaʻa iā lākou i ka ikaika. Ua kapa ʻia ʻo ia he dystrophin . I nā keiki me DMD, ʻaʻole hana ke kino i kēia protein dystrophin. ʻO ka hopena, nāwaliwali mālie ka pā i kapa ʻia he mau ʻiʻo a hoʻomaka e hiolo.
ʻO ka hana a ka lāʻau pale Casimersen, ʻo ia ke kōkua i ke kino e hana i kahi protein Dystrophin hana hapa , ʻoiai inā ʻaʻole hiki iā ia ke hana i ka protein Dystrophin piha. Ua like ia me ka hoʻāʻo ʻana e hoʻopaʻa i ka paia ma ka hoʻohui ʻana i kahi mea ʻē aʻe e hiki ke hoʻohana ʻia ma kahi o ka plaster maikaʻi loa, ʻoiai inā ʻaʻole ia ka mea maikaʻi loa. Hiki i kēia ke hoʻolohi i ka wikiwiki o ka nāwaliwali o nā ʻiʻo.
ʻO ka mea nui, ʻaʻole kūpono kēia lāʻau lapaʻau no kēlā me kēia keiki me DMD. He kūpono wale nō ia no nā keiki me kahi hoʻololi genetic kikoʻī. ʻO kāu kauka wale nō ke hoʻoholo inā kūpono kēia lāʻau lapaʻau no kāu keiki.
Nā mea e haʻi aku i ke kauka ma mua o ka hāʻawi ʻana i ka lāʻau lapaʻau i ke keiki
Ma mua o ka hoʻomaka ʻana o kāu keiki i ka lāʻau lapaʻau ʻo Casimersen, he mea nui e haʻi i kāu kauka i kēia mau ʻike. Mai hūnā i kēia mau mea, no ka mea, he mea nui loa ia no ka palekana o kāu keiki.
- Maʻi puʻupaʻa: Inā he pilikia puʻupaʻa kāu keiki, e haʻi pono iā lākou e pili ana i ia mea.
- Nā maʻi ʻaleka: E haʻi i kāu keiki inā ua loaʻa iā lākou kahi maʻi ʻaleka iā Casimersen a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā kala, a i ʻole nā mea mālama.
- Hāpai a hoʻāʻo paha e hāpai: Inā loaʻa i kahi kaikamahine ʻōpio kēia lāʻau lapaʻau, e hoʻomaopopo i ke kauka inā hāpai ʻo ia a i ʻole e hoʻāʻo ana e hāpai.
- Ka hānai waiū ʻana: Pono e haʻi ʻia inā he makuahine hānai ka mea e loaʻa ana ka lāʻau lapaʻau.
Pehea e hāʻawi ai i ka lāʻau lapaʻau? A me nā mea e makaʻala ai
Hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano he inikini i loko o kahi aʻa . ʻAʻole kēia he mea hiki iā ʻoe ke hana ma ka home. Hāʻawi ʻia ia e nā limahana lapaʻau i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau .
He aha inā e hala ʻoe i kahi mahele lāʻau lapaʻau?
He mea nui loa ka loaʻa ʻana o ka lāʻau pale i nā lā i hoʻonohonoho ʻia no kēia lāʻau lapaʻau. No laila, mai hōʻole i nā lā i hāʻawi ʻia e ke kauka. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kāhea koke aku i kāu kauka a e haʻi iā ia i kēia a hoʻonohonoho i kahi lā no ke kipa aʻe.
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 lawe nui ʻoe i ka lāʻau lapaʻau, e hoʻomaopopo koke i nā limahana o ka haukapila, a i ʻole e kelepona i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo . A i ʻole e hele i ka Emergency Treatment Unit (ETU) kokoke loa.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai ka hoʻohana ʻana i ka lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki iā Casimersen ke hana i kekahi mau hopena ʻaoʻao. E nānā pono nā kauka i ke kūlana o kāu keiki i ka wā o ka mālama ʻana. Eia nō naʻe, he mea nui iā ʻoe ma ke ʻano he makua e makaʻala i kēia.
E hoʻolohe i nā ʻano ma ka papa ma lalo.
| Ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| 🚨 Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke i kāu kauka | |
| Nā hopena alerika | Inā ʻike koke ʻoe i nā hōʻailona e like me ka ʻulaʻula o ka ʻili, ka maneʻo, ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo, he hopena maʻi koʻikoʻi paha ia. E hōʻike koke aku. |
| ʻEha puʻupaʻa | Inā ʻike ʻoe i kekahi pilikia o ka mimi ʻana a i ʻole kahi loli i ka nui o ka mimi āu e hana ai (kahi emi nui a ʻaʻohe mimi paha), e haʻi koke aku i kāu kauka. |
| 🙂 Inā hoʻomau lākou a hoʻopilikia paha, pono ʻoe e haʻi i kāu kauka. Nā hopena ʻaoʻao maʻamau | |
| ʻŪhū a me ka ʻāʻī ʻeha | ʻO ka ʻū maʻamau a i ʻole ka ʻāʻī ʻeha. |
| kuni | Ke kuni nei. |
| ʻEha poʻo | ʻEha poʻo. |
| ʻEha hui | ʻEha kino a me nā hono. |
Hiki paha nā pilikia me nā lāʻau lapaʻau ʻē aʻe?
Wahi a ka ʻike i loaʻa i kēia manawa, ʻaʻole i hōʻike ʻia ʻo Casimersen e hana i kekahi mau pilina kūikawā me nā lāʻau ʻē aʻe.
Akā, mai manaʻo ʻoe pēlā. E hāʻawi i kāu kauka i kahi papa inoa piha o nā lāʻau lapaʻau a pau a kāu keiki e lawe nei (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui) . ʻO ke ala maikaʻi loa ia e mālama pono ai i kāu keiki.
Leka Lawe-Home
- He lāʻau lapaʻau ʻo Casimersen e kōkua ai i ka hana ʻana i kahi ʻano semi-functional o ka protein Dystrophin, kahi i nalowale ma Duchenne Muscular Dystrophy (DMD).
- ʻAʻole kēia he lāʻau lapaʻau no ka maʻi, akā kōkua ia i ka kaohi ʻana i nā hōʻailona.
- He kūpono wale kēia lāʻau lapaʻau no nā keiki me kahi mutation genetic kikoʻī, a na kāu kauka e hoʻoholo.
- He inikini kēia i hāʻawi ʻia ma o ka intravenous ma ka haukapila. ʻAʻole ia e mālama ʻia a lawelawe ʻia paha ma ka home.
- Ma mua o ka hāʻawi ʻana i ka lāʻau lapaʻau, e haʻi i ke kauka i nā ʻike olakino a pau o kāu keiki, e like me nā maʻi puʻupaʻa a me nā maʻi allergies.
- E ʻimi koke i ke kōkua lapaʻau inā ʻike ʻoe i kahi hopena maʻi koʻikoʻi (pehu ʻana o ka ʻili/maka) a i ʻole nā loli i ka mimi ʻana.
- E ʻoluʻolu e kamaʻilio me kāu kauka e pili ana i nā nīnau a hopohopo paha āu e loaʻa ai.
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