Ua pūʻiwa paha ʻoe i ka wā i haʻi aku ai ke kauka iā ʻoe ua loaʻa i kāu keiki liʻiliʻi kahi maʻi i kapa ʻia ʻo Spinal Muscular Atrophy (SMA). He kumuhana koʻikoʻi loa ia. Akā i kēia manawa ua holomua nui ka ʻepekema lapaʻau. Ua loaʻa nā ala hou a maikaʻi loa e mālama ai i ia mau kūlana. ʻO Onasemnogene Abeparvovec kekahi o ia mau lāʻau lapaʻau gene holomua loa, hoʻokahi manawa. Ua kaulana loa ia ma ka inoa inoa ʻo Zolgensma. No laila i kēia lā, e kamaʻilio kākou e pili ana i kēia lāʻau lapaʻau, kāna hana, nā mea e makaʻala ai, a me nā hopena ʻaoʻao ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.
He aha ke ʻano o kēia lāʻau lapaʻau? He aha maoli ka mea e hana nei?
I ka ʻōlelo maʻalahi, ʻo Onasemnogene Abeparvovec kahi lāʻau lapaʻau e mālama ai i kahi maʻi i kapa ʻia ʻo Spinal Muscular Atrophy (SMA) . He maʻi genetic ʻo SMA e hoʻonāwaliwali mālie ai a mae nā ʻiʻo i loko o ko mākou kino. Hoʻokumu ʻia kēia e kahi kīnā i loko o kahi gene e hana ana i kahi protein e pono ai no ka mālama ʻana i nā ʻiʻo i ke olakino.
ʻO ka hana a kēia lāʻau lapaʻau, ʻo ia ke pani i ka gene kīnā me kahi kope olakino o ka gene e hiki ke hana pololei i kēlā protein. Ua kapa ʻia kēia ʻo ka gene therapy . Ke komo kēia gene olakino i ke kino, hoʻomaka ia e hana i ka protein koʻikoʻi. Hoʻōki kēia i ka nāwaliwali hou ʻana o nā ʻiʻo a hoʻomalu ʻia nā hōʻailona mai ka ʻino ʻana.
He hoʻokomo hoʻokahi manawa kēia. No ka mea, loaʻa i ke kino ka gene olakino e pono ai me hoʻokahi mahele lāʻau, ʻaʻohe pono e hoʻomau i ka loaʻa ʻana.
Nā mea e haʻi aku i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
No ka mea he lāʻau lapaʻau kūikawā loa kēia, he mea nui loa ia e hāʻawi i ka hui lapaʻau i kahi wehewehe piha o ke kūlana olakino o kāu keiki. Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e hōʻoia e haʻi i ke kauka e pili ana i kēia mau mea:
- Ka maʻi o kēia manawa: Inā loaʻa i ke keiki kahi maʻi e like me ke kuni, ke anu, a i ʻole ke kuni.
- Maʻi akepaʻa: Inā loaʻa iā ʻoe kekahi maʻi akepaʻa.
- Ka maloʻo ʻana o ka wai: Inā nele ka wai i loko o ke kino.
- Nā maʻi ʻaleka: Inā he maʻi ʻaleka kou i kēia lāʻau lapaʻau a i ʻole kekahi lāʻau lapaʻau a meaʻai paha.
- Hāpai a hānai waiū paha: Hāʻawi pinepine ʻia kēia lāʻau i nā keiki ʻōpio, no laila ʻaʻole pili kēia, akā he mea nui e makaʻala i kēia inā hāʻawi ʻia i kahi ʻōpio ma kekahi ʻano.
Pehea e hāʻawi ʻia ai ka lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau home. Hāʻawi ʻia ia ma kahi haukapila a i ʻole keʻena lapaʻau kūikawā, ma lalo o ka nānā piha ʻana o kahi hui lapaʻau i haku ʻia me nā kauka a me nā kahu maʻi.
He hoʻokomo intravenous kēia. Hāʻawi ʻia i loko o kahi aʻa, e like me ka saline, ma luna o kahi manawa o hoʻokahi hola. Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā pēpē hānau hou. Eia nō naʻe, pono ia i nā hana akahele kūikawā a me ka nānā mau ʻana.
He aha ka mea e hana ai inā ʻoe e lawe i ka overdose?
ʻOiai ke lawelawe ʻia nei kēia e kahi hui lapaʻau ma kahi haukapila, ʻaʻohe manawa kūpono o ka overdose. Eia nō naʻe, inā manaʻo ʻoe ua hana ʻia kekahi mea, e hoʻomaopopo koke i ka hui lapaʻau. A i ʻole, e kelepona i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo . A i ʻole e lawe i ke keiki i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
Nā mea e noʻonoʻo ai i ka wā a ma hope o ka mālama ʻana
Ma hope o ka loaʻa ʻana o kēia lāʻau lapaʻau, aia kekahi mau mea e makaʻala nui ai.
Ka nānā mau ʻana i ke kauka
Ma hope o ka lāʻau lapaʻau, e nānā mau ʻia ke kūlana o ke keiki e nā kauka. Hiki ke hana pinepine ʻia nā hoʻāʻo koko e nānā i nā mea e like me ka hana o ke ake.
Ka pilikia o ka maʻi
Hiki i kēia lāʻau lapaʻau ke loaʻa kekahi hopena i ka ʻōnaehana pale o ke kino, kahi e hoʻonui ai i ka pilikia o ka maʻi.
- Inā loaʻa iā ʻoe nā hōʻailona e like me ke kuni, ka ʻūlū, ke kuni, a i ʻole ka ʻeha o ka puʻu, e kāhea koke aku i kāu kauka.
- Mai hāʻawi i ka lāʻau lapaʻau e like me kou makemake.
- E mālama i kāu keiki i kahi mamao loa mai ka poʻe maʻi mai.
Ke kāohi nei i ka laha ʻana o nā wai kino i nā poʻe ʻē aʻe (he mea nui loa!)
ʻO kēia ka mea nui loa āu e pono ai e makaʻala i ka wā o kēia lāʻau lapaʻau. Ma hope o ka hāʻawi ʻia ʻana o ka lāʻau lapaʻau gene, hiki i nā wai o ke kino o ke keiki (e like me ka lawai, ka mimi, a me nā feces) ke loaʻa nā koena o ka lāʻau lapaʻau no kahi o hoʻokahi mahina . Pono ʻoe e pale i kēia mau mea mai ke komo hewa ʻana i ke kino o kekahi.
- Ka holoi lima: E holoi pono i kou mau lima me ke kopa a me ka wai i nā manawa a pau e hoʻopā aku ai ʻoe i nā wai o ke kino o kāu keiki, ʻoiai ma hope o ka hoʻololi ʻana i nā diapers.
- E hoʻohana i nā mīkina lima: Inā hiki, e ʻaʻahu i nā mīkina lima hoʻolei ʻole i ka wā e hoʻololi ai i ka diaper o kāu pēpē.
- Ke hoʻolei ʻana i nā diaper a me nā ʻōpala: E kau i nā diaper lepo a ka pēpē i piha i ka mimi a me nā mea ʻē aʻe i loko o kahi ʻeke plastik i hoʻopaʻa pono ʻia a hoʻolei pū me ka ʻōpala maʻamau.
Ma ka hahai pono ʻana i kēia mau hana palekana, hiki iā ʻoe ke pale aku i nā lālā ʻē aʻe o kou ʻohana mai ka loaʻa ʻana o kēia lāʻau lapaʻau gene.
Nā kiko ʻē aʻe
- Ka pilikia o ke kahe koko: ʻOiai kahi ʻeha liʻiliʻi e hoʻonui ai i ke kahe koko i kēia manawa. No laila e hoʻohana i kahi palaki niho palupalu loa i ka wā e palaki ai i kou mau niho. Inā ʻike ʻoe i kahi kauka niho, e haʻi pono iā lākou ua loaʻa i kāu keiki kēia lāʻau lapaʻau.
- Ka pilikia o nā puʻupuʻu:He liʻiliʻi loa ka pilikia o ka ulu ʻana o nā puʻupuʻu i loko o ke kino ma muli o kēia lāʻau lapaʻau. ʻAʻole ka hapa nui o kēia mau mea he maʻi kanesa (benign). Eia nō naʻe, inā ʻike ʻoe i kahi puʻupuʻu hou a puʻupuʻu paha ma kekahi wahi o ke kino o kāu keiki, e haʻi koke aku i kāu kauka.
He aha nā hopena ʻaoʻao?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau lapaʻau ke loaʻa nā hopena ʻaoʻao. He koʻikoʻi kekahi, he mea maʻamau kekahi. He mea nui e makaʻala i kēia mau mea.
| Ka hopena ʻaoʻao | Nā mea e pono ai ʻoe e ʻike a me nā hōʻailona |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| ʻEha o ke akepaʻa | ʻEha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, nalowale ka makemake e ʻai, nausea, nā ʻōpala māmā, ka mimi melemele ʻeleʻele a ʻeleʻele paha, ka melemele o ka ʻili a me nā maka, a me ka luhi ʻē. |
| ʻO ka ʻeha a i ʻole ke kahe koko maʻamau ʻole | Ka polū i wehewehe ʻole ʻia ma nā ʻāpana o ke kino, ke kahe ʻana o ke koko i nā ʻāʻī, a me ke kahe ʻana o ka ihu. |
| Maʻi | Kuni, anu, ʻū, ʻeha ka puʻu, nā ʻeha ʻaʻole e ho'ōla, ʻeha i ka wā e mimi ai. |
| Nā hopena hoʻokomo | ʻEha ka umauma, paʻakikī ka hanu ʻana, poniuniu, manaʻo nāwaliwali. |
| ʻEha puʻupaʻa | Ka emi ʻana o ka mimi ʻana, ka pehu ʻana o nā kuʻekuʻe wāwae, nā lima, a i ʻole nā wāwae. |
| ʻAʻai koko hemolytic | Luhi a nāwaliwali paha ma ke ʻano kūikawā, poniuniu, ʻeha poʻo, paʻakikī ka hanu ʻana, mimi ʻeleʻele, melemele o ka ʻili a i ʻole nā maka. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Ka luaʻi ʻana | He mea maʻamau kēia, akā inā hoʻomau a koʻikoʻi paha, e hoʻomaopopo i kāu kauka. |
ʻAʻole i hoʻokomo ʻia nā hopena ʻaoʻao āpau i kēia papa inoa. Eia kekahi, inā ʻike ʻoe i kekahi mea ʻē a ʻokoʻa paha e pili ana i kāu keiki, e kamaʻilio pū me kāu kauka e pili ana i kēlā.
Leka Lawe-Home
- ʻO ka Onasemnogene Abeparvovec (Zolgensma) kahi lāʻau lapaʻau gene kūikawā, hoʻokahi manawa no ka Spinal Muscular Atrophy (SMA).
- Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila, ma lalo o ka mākaʻikaʻi piha ʻana a kahi hui lapaʻau.
- He mea nui e hāʻawi i ka ʻike olakino a pau o ke keiki i ke kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau.
- He mea nui loa ka hoʻolei pono ʻana i nā wai o ke kino o ke keiki, e like me ka ʻōpala, ka mimi, a me ka lawai, no hoʻokahi mahina ma hope o ka mālama ʻana. No ka palekana kēia o nā lālā ʻē aʻe o ka ʻohana.
- E ʻimi koke i ke kōkua lapaʻau inā ʻike ʻoe i nā hōʻailona o ka hōʻino ʻia o ke akepaʻa (melemele o nā maka/ʻili, mimi ʻeleʻele), nā hōʻailona o ka maʻi (kuni), a i ʻole nā hopena maʻi koʻikoʻi.
- E ʻoluʻolu e kamaʻilio me kāu kauka e pili ana i nā nīnau a hopohopo paha āu e pili ana i kēia lāʻau lapaʻau.
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