I kekahi manawa lohe mākou e pili ana i nā maʻi i laha ʻole loa, ʻo ia hoʻi, ʻaʻole loaʻa i ka hapa nui o ka poʻe. Hoʻokumu ʻia kekahi o kēia mau mea e kekahi mau kīnā i loko o ko mākou kino, ʻo ia hoʻi, nā mea i loaʻa i ka wā hānau. I kēia lā, ke kamaʻilio nei mākou e pili ana i kahi lāʻau pale kūikawā i hoʻohana ʻia e mālama i kēlā maʻi laha ʻole. ʻO Elapegademase kona inoa.
He aha ke ʻano o kēia lāʻau lapaʻau? No ke aha i hāʻawi ʻia ai kēia?
I ka ʻōlelo maʻalahi, ʻo Elapegademase kahi inikini e hoʻopuka i kahi enzyme i waho e hiki ʻole ai i ko mākou kino ke hana me ka ʻole. Ua hānau ʻia kekahi poʻe, ʻoi aku hoʻi nā pēpē, me ka nele o kahi enzyme i kapa ʻia ʻo Adenosine Deaminase (ADA) . He mea nui kēia enzyme no ka ʻōnaehana pale o ko mākou kino, ka ʻōnaehana pale e pale iā mākou mai nā maʻi, e hana pono.
Ke nalowale kēia enzyme ADA, ua aneane nāwaliwali loa ka ʻōnaehana pale o ke kino. Kāhea mākou i kēia kūlana ʻo Severe Combined Immunodeficiency Disease (SCID) . He kūlana koʻikoʻi loa kēia. Ma muli o ka nalowale ʻana o ka ʻōnaehana pale o ke kino, ʻoiai ke anu a i ʻole ke kuni paha e maʻalahi ke ho'ōla ʻia i ke kanaka maʻamau hiki ke make no ia kanaka.
No laila, ʻo ka hana a kēia lāʻau pale i kapa ʻia ʻo Elapegademase, ʻo ia ka hāʻawi ʻana i ke kino i ka enzyme ADA nele. Ua like ia me ka hoʻopiha hou ʻana i kahi mea i nalowale. Hiki ke kapa ʻia kēia lāʻau pale ʻo REVCOVI ma ka mākeke.
He mea nui e hoʻomanaʻo ʻaʻole kēia he lāʻau lapaʻau no ka maʻi. He lāʻau ia e pale ai i ke ola o ka mea maʻi a hāʻawi i ka palekana e pono ai e ola i kahi ola maʻamau.
He aha kaʻu e haʻi aku ai i ke kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau?
Ma mua o kou hoʻomaka ʻana a i ʻole kāu keiki i kēia lāʻau pale, he mea nui loa ia e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha. E hōʻoia e haʻi iā lākou inā loaʻa iā ʻoe kekahi o nā kūlana i helu ʻia ma lalo nei.
- Nā maʻi kahe koko: Inā he mau pilikia kou i ke kāpili ʻana o ke koko, a inā he ʻano kou e kahe koko me ke kāohi ʻole ʻia mai kahi ʻoki liʻiliʻi.
- Nā maʻi o kēia manawa: Inā loaʻa iā ʻoe kekahi maʻi e like me ke kuni, ke anu, ka ʻū.
- He haʻahaʻa ka helu platelet koko: Inā ua ʻike ʻia ʻoe me ka haʻahaʻa o ka helu platelet i loko o kou koko ma nā hōʻike i hala.
- Nā Allergies: Inā he maʻi ʻoe i kekahi lāʻau lapaʻau, meaʻai, a mea hoʻoluʻu paha, ʻaʻole wale kēia lāʻau i kapa ʻia ʻo Elapegademase.
- Hāpai: Inā hāpai ʻoe a i ʻole e manaʻo ana e hāpai i ka wā e hiki mai ana.
- Ka hānai waiū ʻana: Inā he makuahine ʻoe e hānai waiū ana i kāu keiki.
Ma muli o kēia ʻike, e hoʻolālā ke kauka i ka lāʻau lapaʻau e kūpono loa iā ʻoe.
Pehea e pono ai iaʻu ke hoʻohana i kēia lāʻau lapaʻau?
ʻO ka maʻamau, hāʻawi ʻia kēia lāʻau pale ma ke ʻano he inikini i loko o kahi ʻiʻo . Hana pinepine ʻia kēia ma kahi haukapila a i ʻole ke keʻena lapaʻau e kahi loea mālama ola i aʻo ʻia.
Eia nō naʻe, i kekahi mau hihia, no ka maʻalahi o ka mea maʻi, hiki ke kuhikuhi ʻia ʻoe a i ʻole kahi mea mālama e hāʻawi i ka lāʻau pale ma ka home. I kēia hihia, he mea nui loa ka hāʻawi ʻana i ka lāʻau pale e like me ke kuhikuhi ʻana, i ka manawa kikoʻī, a ma ka nui kikoʻī . Mai hāʻawi i nā nui hou aʻe a i ʻole pinepine ma mua o ka mea a kāu kauka e ʻōlelo ai iā ʻoe.
He aha kāu e hana ai me nā nila i hoʻohana ʻia?
He mea nui loa kēia. Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala . Hiki iā lākou ke hoʻopōʻino loa i nā poʻe ʻē aʻe. Aia kahi pahu ʻoi kūikawā no kēia mau mea. Inā ʻaʻohe āu, hiki iā ʻoe ke kiʻi i hoʻokahi mai kāu kauka.
I ka manawa hea e hāʻawi ai i kēia lāʻau lapaʻau i nā keiki?
ʻOiai ʻo kēia maʻi ka mea maʻamau i nā keiki ʻōpio a me nā pēpē hānau hou, ua ʻōlelo ʻia hoʻi kēia lāʻau pale no kēlā mau hui makahiki. Eia nō naʻe, pono e mālama pono ʻia i ka wā e hāʻawi ai i nā keiki. No laila, e hahai pono i nā ʻōlelo a ke kauka o kāu keiki.
He aha inā piʻi ka nui (overdose)?
Inā manaʻo ʻoe ua lawe ʻoe i kahi overdose, e hele koke i ka haukapila kokoke loa ʻo Emergency Department (ETU) . A i ʻole, e kelepona i ke National Poisons Information Centre ma ka Colombo National Hospital .
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau pale ke hana i kekahi mau hopena ʻaoʻao. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau. He koʻikoʻi kekahi o kēia mau mea, a he mea maʻamau kekahi. He mea nui e makaʻala i kēia mau mea.
| ʻAno o ka hopena ʻaoʻao | Nā ʻano |
|---|---|
| Inā loaʻa iā ʻoe kēia mau hōʻailona, e haʻi koke aku i kāu kauka. | |
| Nā hopena aleri koʻikoʻi | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, lehelehe a i ʻole ke alelo, paʻakikī ke hanu. |
| Nā Hōʻailona o ka Maʻi | Kuni, anu, ʻeha ka puʻu, ʻeha i ka wā e mimi ai. |
| Anemia | Manaʻo i ka luhi loa, nāwaliwali, maule, poniuniu, a me ka pilikia o ka hanu ʻana. |
| Inā hoʻomau kēia mau mea a lilo paha i mea hoʻopilikia, e haʻi i kāu kauka. | |
| Kuke | Ke loaʻa nei i ka ʻū mau. |
| Ka luaʻi ʻana | Ka luaʻi ʻana. |
| ʻEha ma kahi i hoʻokomo ʻia | ʻEha, ʻulaʻula, a pehu paha ma kahi i inikini ʻia. |
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.
Pehea e mālama ai i ka lāʻau lapaʻau?
Inā ʻoe e hoʻohana ana i kēia lāʻau pale ma ka home, he mea nui loa ia e mālama pono iā ia.
- E mālama iā ia ma kahi palekana i hiki ʻole i nā keiki ke loaʻa .
- E mālama i loko o ka friji ma kahi mahana ma waena o 2°C a me 8°C .
- Mai hoʻopaʻahau i ka lāʻau lapaʻau no kekahi kumu. ʻO ka hana ʻana pēlā e hoʻopau i ka pono o ka lāʻau lapaʻau.
- E hoʻolei aku i kekahi lāʻau lapaʻau i hala i kona lā palena pau me ka hoʻohana ʻole ʻana.
Leka Lawe-Home
- He lāʻau pale ʻo Elapegademase no ka maʻi immunodeficiency i hui pū ʻia (SCID), kahi maʻi i hoʻokumu ʻia e ka nele o ka enzyme ADA. He lāʻau lapaʻau ola kēia e kāohi ana i ka maʻi ma mua o ka hoʻōla ʻana.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mau maʻi āpau, nā maʻi allergies, a me nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- E lawe i ka lāʻau lapaʻau i ka manawa kūpono, ma ka nui kūpono. Inā poina iā ʻoe kahi nui, e kāhea koke aku i kāu kauka.
- Inā ʻike ʻoe i kekahi mau hōʻailona e like me ka maʻi ʻaleka koʻikoʻi, ka maʻi, a i ʻole ka luhi nui, e ʻimi koke i ke kōkua lapaʻau.
- Inā ʻoe e hoʻohana ana i ka lāʻau lapaʻau ma ka home, e mālama pono iā ia i loko o ka pahu hau. Mai hoʻohuihui i nā nui.
- Inā he mau nīnau kāu e pili ana i kēia lāʻau lapaʻau, mai makaʻu e nīnau i kāu kauka.
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