Inā loaʻa i kekahi o kou ʻohana, ʻo kāu keiki ponoʻī paha, kahi maʻi i kapa ʻia ʻo Duchenne muscular dystrophy (DMD), ke ʻimi mau nei paha ʻoe i nā lāʻau lapaʻau no ia mea. He maʻi genetic kēia e hoʻonāwaliwali mālie ai i nā ʻiʻo. No laila, ʻo Golodirsen kahi lāʻau lapaʻau hou no kēia. Ma kēia ʻatikala, e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.
He aha kēia lāʻau lapaʻau i kapa ʻia ʻo Golodirsen?
I ka ʻōlelo maʻalahi, he lāʻau kēia i hoʻohana ʻia e mālama i ka Duchenne Muscular Dystrophy (DMD). I kēia manawa e nānā kākou pehea e hana ai.
E noʻonoʻo ʻoe ua like nā ʻiʻo o ko kākou kino me ka pā. Hoʻopaʻa ʻia nā piliki ma kēia pā e kahi protein i kapa ʻia ʻo 'dystrophin', e like me ka mortar. I loko o ke kanaka me DMD, ʻaʻole i hana ʻia kēia mortar, ʻo ia hoʻi, ka protein dystrophin. No laila, ʻaʻole ikaika ka pā i kapa ʻia ʻo ka ʻiʻo, a nāwaliwali mālie.
Hana ka lāʻau lapaʻau ʻo Golodirsen ma ke kōkua ʻana i ke kino e hana i kēia protein dystrophin. Kōkua kēia i ka hoʻonui ʻana i ka ikaika o nā ʻiʻo a me ke kāohi ʻana i ka holomua o ka maʻi.
Nā mea āu e haʻi aku ai i kāu kauka ma mua o ka lawe ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui loa ia e hāʻawi i ke kauka i kahi wehewehe piha no ke kūlana olakino o kāu keiki a i ʻole ke kūlana olakino o kāu keiki. E hōʻoia e haʻi pono i kēia mau mea.
- Maʻi puʻupaʻa: Inā loaʻa iā ʻoe kekahi maʻi e pili ana i ka puʻupaʻa, pono ʻoe e haʻi mai iā mākou e pili ana i ia mea.
- Nā maʻi ʻaleka: E haʻi i kāu kauka inā he maʻi ʻaleka kou iā Golodirsan a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
- Inā hāpai ʻoe a i ʻole e hoʻāʻo ana e hāpai: Inā hāpai ʻoe a i ʻole e hoʻolālā ana e loaʻa kahi pēpē, e haʻi i kāu kauka.
- Inā he makuahine hānai ʻoe: Inā he makuahine hānai ʻoe, pono ʻoe e haʻi i kēlā.
Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha.
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home a hoʻohana.
Hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano he inikini i loko o kahi aʻa . Hāʻawi wale ʻia e ke kauka a i ʻole ke kahu maʻi i aʻo ʻia, ma kahi haukapila a i ʻole ke keʻena lapaʻau .
No laila, ʻaʻole pono ʻoe e hopohopo e pili ana i ka nui o ka lāʻau a i ʻole ke ʻano o ka hāʻawi ʻana. Na ke kime lapaʻau e mālama i kēlā mau mea.
Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki?
ʻAe, hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki me DMD. Eia nō naʻe, e wehewehe kāu kauka iā ʻoe i nā hana palekana a me nā noʻonoʻo kūikawā e pili ana.
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 kelepona koke i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo , a i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
Mea nui: No ka mea maʻi wale nō kēia lāʻau lapaʻau. Mai hāʻawi i kēia lāʻau lapaʻau i kekahi.
He aha kāu e hana ai inā e poina iā ʻoe kahi mahele o ka lāʻau lapaʻau?
He lāʻau lapaʻau kēia e pono e lawe mau ʻia, ma kahi papa manawa i hoʻonohonoho ʻia. No laila, he mea nui loa ia e hahai pono i nā lā a me nā manawa a kāu kauka e hāʻawi ai iā ʻoe. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kelepona koke i kāu kauka a i ʻole ke keʻena lapaʻau a e hoʻomaopopo iā lākou. E haʻi lākou iā ʻoe i ka mea e hana ai ma hope. Mai hoʻokuʻu i kāu lāʻau lapaʻau no kekahi kumu.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i ka lāʻau pale Golodiran ke hana i kekahi mau hopena ʻaoʻao. Akā, ʻaʻole i loaʻa i nā kānaka a pau. E māhele kākou i kēia i ʻelua ʻāpana.
| Nā hopena ʻaoʻao hiki ke loaʻa iā Golodirsen | |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono ai ke kōkua koke ʻana o ke kauka | |
| Nā hopena alerika | Nā hōʻailona e like me ka ʻulaʻula o ka ʻili, ka maneʻo, ka ʻulaʻula, ka pehu ʻana 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. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| ʻEha poʻo | ʻEha pinepine ka ʻeha. |
| kuni | Ke kuni nei. |
| Kuke a me ke anu | ʻŪhū, ihu wai, a i ʻole ihu paʻa. |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | ʻEha ka ʻōpū, nausea, luaʻi. |
ʻAʻole i loko o kēia papa inoa nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mea ʻē aʻe, e kamaʻilio me kāu kauka e pili ana i ia mea.
Leka Lawe-Home
- He lāʻau pale kūikawā ʻo Golodirsen i hoʻohana ʻia no ka mālama ʻana i ka Duchenne muscular dystrophy (DMD).
- Kōkua kēia i ke kino e hana i kahi protein i kapa ʻia ʻo dystrophin, he mea nui ia no nā ʻiʻo.
- Hāʻawi ʻia kēia lāʻau lapaʻau ma o ka intravenous ma ka haukapila a i ʻole ke keʻena lapaʻau. No laila, ʻaʻole ʻoe e ʻae ʻia e lawe i ka home.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mau kūlana olakino āpau, ʻoiai nā maʻi puʻupaʻa a me nā maʻi allergies.
- Inā loaʻa iā ʻoe kekahi mau hōʻailona maʻi e like me ka ʻulaʻula, ka pehu ʻana, a i ʻole nā hōʻailona e hōʻike ana i ka hōʻino ʻia ʻana o nā puʻupaʻa, e like me ka emi ʻana o ka mimi i hoʻopuka ʻia, e hoʻomaopopo koke i kāu kauka.
- E hōʻoia e hele i ke kauka i nā lā a me nā manawa āna e hāʻawi ai iā ʻoe a loaʻa ka lāʻau lapaʻau. Mai hōʻole i kāu mau manawa lāʻau lapaʻau.
💬 Comments (0)
ʻAʻohe manaʻo i kau ʻia. Hoʻohui i kāu manaʻo ma ʻaneʻi no ka manawa mua.
Hoʻohui i kāu manaʻo