Ma ke ʻano he makua, maopopo iaʻu ke kaumaha o kou puʻuwai ke haʻi aku ke kauka iā ʻoe ua loaʻa i kāu keiki liʻiliʻi ka spinal muscular atrophy, a i ʻole ka mea a mākou e ʻike ai ʻo 'Spinal Muscular Atrophy' (SMA). Akā me ka holomua o ka ʻepekema lapaʻau, ua puka mai nā lāʻau lapaʻau hou a hoʻohiki nui e hana me ia mau kūlana. I kēia lā ke kamaʻilio nei mākou e pili ana i kekahi lāʻau lapaʻau kūikawā a hou. ʻO ia ka lāʻau i kapa ʻia ʻo Onasemnogene Abeparvovec.
I ka ʻōlelo maʻalahi, he aha kēia Onasemnogene Abeparvovec?
He inoa paʻakikī iki kēia, akā e mālama kākou i ka maʻalahi. Ua lohe paha ʻoe i kēia lāʻau lapaʻau me ka inoa inoa ʻo 'Zolgensma'. ʻAʻole kēia he pila a capsule maʻamau. He lāʻau lapaʻau gene kēia.
E noʻonoʻo, ua hoʻomalu ʻia kēlā me kēia hana i loko o ko kākou kino e ko kākou mau genes. E like me kahi polokalamu kamepiula. Ma SMA, aia kahi kīnā i loko o kahi gene e hana ana i kahi protein e pono ai no ka hana ʻiʻo. No laila, ʻo ka hana a kēia lāʻau Onasemnogene Abeparvovec, ʻo ia ke hoʻokomo i kahi kope o kahi gene olakino i loko o ke kino o ke keiki ma kahi o kēlā gene kīnā. Lawe ʻia kēia gene olakino i nā ʻaʻalolo o ke kino me ke kōkua o kahi virus i hoʻololi ʻole ʻia (virus adeno-associated).
ʻO ka mea nui, ʻaʻole kēia he lāʻau e hoʻōla loa i ka SMA. Eia nō naʻe, hiki iā ia ke kōkua i ka hoʻōki ʻana i ka maʻi mai ka holomua ʻana a kōkua i nā ʻiʻo o ke keiki e hana a ulu ikaika.
Pehea e hāʻawi ʻia ai kēia lāʻau lapaʻau?
Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila, ma lalo o ka nānā piha ʻana o nā kauka loea a me nā limahana kahu maʻi. He lāʻau hoʻokomo wai kēia. E like me ka wai saline, hāʻawi mālie ʻia kēia lāʻau lapaʻau i loko o ke kino ma kahi o hoʻokahi hola. ʻO ka maʻamau, hāʻawi ʻia kēia lāʻau lapaʻau hoʻokahi wale nō i ke ola.
Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā pēpē hānau hou a me nā kamaliʻi ʻōpio. Na ke kime lapaʻau kūikawā e nānā i ke keiki e hoʻoholo inā kūpono kēia lāʻau lapaʻau no kāu keiki a ʻaʻole paha. No laila, mai hopohopo no ia mea.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka mālama ʻana
No ka mea he lāʻau lapaʻau holomua loa kēia, he mea nui loa ia e hoʻomaopopo i ka hui lapaʻau i nā kikoʻī āpau e pili ana i ke kūlana olakino o kāu keiki ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. E hōʻoia e haʻi iā lākou e pili ana i kēia mau mea.
- Inā he maʻi puʻuwai ko ke keiki.
- Inā ua hōʻike mua ʻoe i kekahi maʻi akepaʻa a i ʻole nā loli i nā enzymes akepaʻa.
- I loko o ke kokoInā he maʻi koko kou e like me ka helu platelet haʻahaʻa.
- Inā ua loaʻa iā ʻoe kahi hopena maʻi ma mua i kēia lāʻau lapaʻau a i ʻole kekahi lāʻau lapaʻau a meaʻai paha.
- Inā hāpai ka makuahine, e hoʻāʻo ana e hāpai, a e hānai waiū ana paha.
He mea nui loa ka hāʻawi pololei ʻana i kēia ʻike no ka palekana o ke keiki.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai ka lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau lapaʻau ke hana i kekahi mau hopena ʻaoʻao. He mea maʻamau kekahi, akā aia kekahi mau mea e pono ai mākou e makaʻala loa. E wehewehe pono kākou iā lākou.
| Ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
| Nā Hōʻailona o ka ʻeha o ke akepaʻa | ʻO kēia ka hopena koʻikoʻi nui loa a maʻamau . E makaʻala i nā hōʻailona e like me ka melemele o nā maka a i ʻole ka ʻili (e like me ka jaundice), ka mimi melemele/ʻeleʻele, nā ʻōpala ʻeleʻele, ka ʻeha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, ka nausea, ka nalowale o ka makemake, a me ka luhi nui. Inā ʻike ʻoe i kekahi o kēia mau mea , e haʻi koke i kāu kauka . |
| Nā hopena maʻi ʻaleka | Inā ʻike 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, a i ʻole ka paʻakikī o ka hanu ʻana, he pilikia ia. E haʻi koke aku i kāu kauka. |
| Ke kahe koko ʻana a i ʻole ka ʻeha ʻana ma ke ʻano maʻamau | Ma muli o ka emi ʻana o nā platelets, ʻaʻole paha e pau ke kahe ʻana o ke koko mai kahi ʻeha liʻiliʻi, a hiki ke ʻike ʻia kahi palapū ma lalo o ka ʻili. E hoʻomaopopo pū i kāu kauka e pili ana i kēia. |
| Nā hōʻailona o ka maʻi | Inā loaʻa iā ʻoe ke kuni me ke kumu ʻole, ke anu, ka ʻāʻī ʻeha, a i ʻole ke koʻi, e haʻi i kāu kauka e pili ana i ia mea. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka | |
| Ka luaʻi ʻana | Hiki i kāu keiki ke luaʻi ma hope o ka lāʻau lapaʻau. Hoʻomaha pinepine kēia i loko o kekahi mau lā. Eia nō naʻe, inā hoʻomau ia a inā pilikia paha kāu keiki, e haʻi i kāu kauka. |
He aha inā loaʻa iaʻu kahi overdose?
ʻOiai ke lawelawe ʻia nei kēia lāʻau lapaʻau ma lalo o ka nānā ʻana o ke kauka ma ka haukapila, ʻaʻohe manawa kūpono o ka overdose. Eia nō naʻe, inā manaʻo ʻoe ua hana ʻia kēia, pono ʻoe e hoʻomaopopo koke i ka Emergency Treatment Unit (ETU) o ka haukapila . Hiki iā ʻoe ke kelepona i ke National Poisons Information Centre ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo inā pono.
Nā mea e noʻonoʻo ai i ka wā a ma hope o ka mālama ʻana
Nā hoʻāʻo koko
Ma mua a ma hope o ka mālama ʻana, pono kāu keiki e hana i nā hoʻāʻo koko maʻamau e nānā i ka hana o ko lākou akepaʻa a me nā pae platelet no kekahi manawa. No ka palekana o kāu keiki kēia, no laila he mea nui loa e hana pololei ʻia kēia mau hoʻāʻo i nā lā i hoʻonohonoho ʻia e like me ke kuhikuhi a kāu kauka.
Ka lawelawe ʻana i nā wai o ke kino a me nā ʻōpala
He mea nui loa kēia i hoʻolohe ʻole ʻia e ka poʻe he nui. Ma hope o ka mālama ʻana, hiki ke hoʻokuʻu ʻia nā ʻāpana o kēia lāʻau lapaʻau (virus i hoʻololi ʻia) i loko o ka ʻōpala a me ka mimi o ke keiki no hoʻokahi mahina a ʻoi aku paha. No laila, pono e makaʻala loa nā lālā o ka ʻohana i ka wā e hoʻololi ai a hoʻomaʻemaʻe i nā diapers o ke keiki.
- E komo i nā mīkina lima i kēlā me kēia manawa āu e hoʻololi ai i kahi diaper.
- E kau i ka diaper i hoʻohana ʻia i loko o kahi ʻeke plastik i hoʻopaʻa pono ʻia a hoʻolei aku i loko o kahi ʻōpala ʻokoʻa.
- Ma hope o ka hoʻololi ʻana i ka diaper, e holoi pono i kou mau lima me ke kopa.
- Inā lepo nā lole a i ʻole nā moena o kāu keiki me ka ʻōpala a i ʻole ka mimi, e holoi ʻokoʻa iā lākou i ka wai wela.
Mai hopohopo no kēia. Ma mua o kou haʻalele ʻana i ka haukapila a hoʻi i ka home, e hāʻawi ke kime lapaʻau iā ʻoe i nā ʻōlelo aʻoaʻo maopopo e pili ana i ka hana ʻana i kēia mau mea.
Leka Lawe-Home
- ʻO ka Onasemnogene Abeparvovec (Zolgensma) kahi lāʻau lapaʻau gene kikoʻī no ka Spinal Muscular Atrophy (SMA), i hāʻawi ʻia ma ke ʻano intravenous i hoʻokahi manawa i ke ola.
- ʻOiai ʻaʻole kēia e ho'ōla loa i ka maʻi, he kōkua nui ia i ka kaohi ʻana i ka holomua o ka maʻi a me ka hoʻomaikaʻi ʻana i ke ola o ke keiki.
- He mea nui e haʻi i ke kauka e pili ana i ka mōʻaukala olakino piha o ke keiki (ʻoiai hoʻi nā pilikia e pili ana i ke akepaʻa, ka puʻuwai, a me ke koko) ma mua o ka mālama ʻana.
- E makaʻala loa i nā hōʻailona o ka hōʻino ʻia o ke akepaʻa (melemele o ka ʻili/maka, mimi ʻeleʻele) ma hope o ka mālama ʻana. Inā ʻike ʻoe i kekahi o ia mau hōʻailona, e hoʻomaopopo koke i kāu kauka.
- He mea nui loa e hahai i ka ʻōlelo aʻo a ke kauka i ka wā e lawelawe ai i nā diapers a me nā ʻōpala o ka pēpē no kekahi mau mahina ma hope o ka mālama ʻana.
- Inā he mau hopohopo kou e pili ana i kēia lāʻau lapaʻau, mai kuhi wale, akā e nīnau i ke kauka a i ʻole ka hui lapaʻau e mālama ana i kāu keiki.
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