I kekahi manawa ke kuhikuhi mai ke kauka i kahi lāʻau lapaʻau paʻakikī iki a mākou i lohe ʻole ai, hopohopo iki mākou a makaʻu hoʻi, ʻeā? Nui nā nīnau e like me "He aha kēia lāʻau lapaʻau? He aha ka mea e hana ʻia me kēia? E loaʻa anei nā hopena ʻaoʻao?" e hiki mai ana i ka noʻonoʻo. I kēia lā, e kamaʻilio mākou e pili ana i ka lāʻau pale ʻo Elapegademase, kahi i lohe ʻole ʻia e ka poʻe he nui, akā he lāʻau lapaʻau koʻikoʻi loa ia, ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.
He aha ka Elapegademase?
I ka ʻōlelo maʻalahi, he lāʻau pale ʻo Elapegademase e mālama ai i kahi maʻi genetic kakaʻikahi loa. Ua kapa ʻia kēia maʻi ʻo Adenosine Deaminase (ADA Deficiency) . He paʻakikī iki ka inoa, no laila e nānā kākou iā ia ma ke ʻano maʻalahi.
E noʻonoʻo he hale hana nui ko kākou kino. No ka hana pono ʻana o nā mea a pau ma kēia hale hana, pono nā ʻano limahana like ʻole. ʻO nā enzymes nā limahana liʻiliʻi e hana ana i loko o ko kākou kino. He hana kūikawā ko kēlā me kēia enzyme.
ʻO Adenosine Deaminase kekahi o ia ʻano enzyme kūikawā. ʻO kāna hana ka wāwahi ʻana i kahi kemika makemake ʻole ʻia (deoxyadenosine) i hana ʻia i loko o kā mākou mau cell a wehe aku mai ke kino.
I kēia manawa, ua hānau ʻia kekahi poʻe me ka nele o kēia enzyme i kapa ʻia ʻo adenosine deaminase, a i ʻole he kakaikahi wale nō kā lākou hana ʻana. ʻO ia ka mea a mākou e kapa nei he hemahema ADA. Ke nalowale kēia enzyme, hoʻomaka kēlā kemika makemake ʻole e hōʻiliʻili i loko o ke kino. He mea ʻawahia loa kēia mea i nā cell hakakā (lymphocytes) i loko o kā mākou ʻōnaehana pale . ʻO ka hopena, ua luku ʻia kēlā mau cell, a ua nāwaliwali loa ka ʻōnaehana pale.
Ua kapa ʻia kēia ʻōnaehana pale kino nāwaliwali loa ʻo Severe Combined Immunodeficiency (SCID) . He maʻalahi loa ke kanaka me kēia maʻi i nā maʻi bacteria.
No laila, ʻo ka hana a ka lāʻau pale Elapegademase, ʻo ia ka hāʻawi ʻana i ka enzyme nalowale i kapa ʻia ʻo adenosine deaminase mai waho o ke kino. Ua kapa ʻia kēia ʻo Enzyme Replacement Therapy . Ke hāʻawi ʻia kēia lāʻau pale, ua wāwahi ʻia nā mea ʻawahia e hōʻiliʻili ana i loko o ke kino, ua pau ka hōʻino ʻana i nā hunaola pale, a hoʻomaka hou ka ʻōnaehana pale e ikaika. Hiki i ke kino ke hakakā i nā maʻi.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui loa ia e hāʻawi i kāu kauka i kahi wehewehe piha o kou kūlana olakino. Pono e haʻi ʻia kēia mau mea.
| Ke kūlana āu e pono ai e hōʻike | No ke aha he mea nui kēlā? |
|---|---|
| Ke kūlana maʻi o kēia manawa (e like me ke kuni, ka ʻū, ke anu) | He mea nui paha ke kaohi ʻana i nā maʻi i loaʻa ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau. |
| Ua emi nā pae platelet | Hiki i kēia lāʻau lapaʻau ke hoʻopilikia i nā hoʻokolohua koko, no laila pono ke kauka e makaʻala i nā kūlana e kū nei. |
| Nā maʻi ʻaleka i ka elapegamide a i ʻole nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, a i ʻole nā mea hoʻoluʻu | He mea nui kēia no ka loiloi ʻana i ka pilikia o kahi hopena allergies koʻikoʻi i ka lāʻau lapaʻau. |
| Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpai | Pono ʻoe e kūkākūkā me kāu kauka i nā hopena hiki ke loaʻa i ka pēpē i loko o ka ʻōpū. |
| Inā hānai ʻia ka pēpē me ka waiū | Na kāu kauka e aʻo iā ʻoe inā e hele ka lāʻau lapaʻau i ka pēpē ma o ka waiū umauma a inā he hopena kona. |
Pehea ʻoe e hoʻohana pono ai i kēia lāʻau lapaʻau?
Hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano he inikini intramuscular . Hāʻawi pinepine ʻia kēia e kahi hui lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau. Eia nō naʻe, i kekahi mau hihia, no ka maʻalahi o ka mea maʻi, hiki nō hoʻi ke loaʻa i kēia inikini ma ka home.
Inā pono ʻoe e loaʻa ka lāʻau pale ma ka home...
Mai hopohopo. E hōʻike maopopo aku nā limahana kahu maʻi i aʻo ʻia o ka haukapila iā ʻoe, i kēlā me kēia ʻanuʻu, pehea e hana ai i kēia ma ka home.
- Pehea e hoʻomākaukau ai i ka lāʻau lapaʻau.
- He wahi maikaʻi loa ia e loaʻa ai ka lāʻau pale.
- He ala maikaʻi loa ia e loaʻa ai ka lāʻau pale.
- Pehea e hoʻolei aku ai i nā syringe a me nā nila i hoʻohana ʻia me ka palekana.
He mea nui loa: Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala maʻamau. Pono e waiho ʻia i loko o kahi pahu plastik mānoanoa kūikawā (pahu ʻoi)**. Inā ʻaʻohe āu, e nīnau i kāu kauka a i ʻole ka haukapila e pili ana i hoʻokahi.
Ke hāʻawi nei ʻoe i kēia lāʻau lapaʻau i nā keiki?
ʻAe, ua kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki no ka mea ua ʻike pinepine ʻia ka hemahema ADA i ka wā ʻōpiopio. Eia nō naʻe, he mea nui e hahai pono i nā ʻōlelo aʻoaʻo lapaʻau, no ka mea, aia nā manaʻo kūikawā i ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki ʻōpio.
He aha kāu e hana ai inā lawe nui ʻoe i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe ʻoe ma mua o ka nui i kuhikuhi ʻia, e kelepona koke i ke Kikowaena ʻIke Poisons National ma ka Halemai Lahui ʻo Colombo , a i ʻole e hele i ka ʻOihana Pilikia (ETU) o ka haukapila kokoke loa.
He aha kāu e hana ai inā e poina ʻoe i kahi mahele o ka lāʻau lapaʻau?
- Inā ʻoe e kiʻi ana i kāu lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau: He mea nui loa ʻaʻole e haʻalele i kāu manawa i hoʻonohonoho ʻia. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i kāu lā i hoʻonohonoho ʻia, e kelepona koke i ka haukapila a e hoʻomaopopo iā lākou.
- Inā ʻoe e lawe ana i ka lāʻau lapaʻau ma ka home: Inā e poina ʻoe i kahi lāʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. Eia nō naʻe, inā kokoke ka manawa no kāu lāʻau aʻe, e kāpae i ka lāʻau i poina a lawe i kāu lāʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe pālua i ka lāʻau.
Ke launa pū nei kēia lāʻau lapaʻau me nā mea ʻē aʻe? (Nā Hana like)
ʻAʻole i aʻo nui ʻia pehea e launa pū ai nā lāʻau lapaʻau ʻē aʻe, nā huahana lāʻau, a i ʻole nā mea hoʻohui me kēia lāʻau lapaʻau.
No laila, he mea nui e hāʻawi i kāu kauka i kahi papa inoa piha o nā lāʻau lapaʻau āpau āu e lawe nei (me nā lāʻau lapaʻau no nā kūlana ʻē aʻe, nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui). He mea nui hoʻi e haʻi i kāu kauka inā ʻoe e puhipaka a inu waiʻona paha.
Nā mea e makaʻala ai i ka wā e hoʻohana ai i ka lāʻau lapaʻau
E nānā mau kāu kauka iā ʻoe i kou wā e loaʻa ana i kēia lāʻau lapaʻau.
- E hele i nā keʻena lapaʻau i hoʻonohonoho ʻia: He mea nui kēia e ʻike pehea e hoʻopilikia ai ka lāʻau lapaʻau i kou kino a inā e emi ana kāu mau hōʻailona.
- Hana koko: Hiki i kāu kauka ke kauoha i nā hoʻokolohua koko maʻamau e ana i ka hana o kāu ʻōnaehana pale a me ka pono o kāu lāʻau lapaʻau. Mai hōʻalo iā lākou.
- E makaʻala i nā hōʻailona: Inā he loli i kāu mau hōʻailona (no ka maikaʻi a i ʻole ka ʻino), e haʻi i kāu kauka e pili ana i ia mea.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau lapaʻau ke hana i nā hopena ʻaoʻao i kekahi poʻe, akā ʻaʻole i loaʻa i nā mea āpau.
| ʻAno o ka hopena ʻaoʻao | Nā ʻano |
|---|---|
| Inā loaʻa iā ʻoe kēia mau hōʻailona, e hoʻomaopopo koke i kāu kauka. | |
| Nā hopena alerika koʻikoʻi |
|
| E haʻi i kāu kauka inā ʻike ʻoe i kekahi o nā hōʻailona ma lalo nei, he mea maʻamau, hoʻomau, a hoʻopilikia paha: | |
| Kuke | He ʻūhū mau hou. |
| Ka luaʻi ʻana | Ka luaʻi a i ʻole ka luaʻi ʻana ma hope o ka lawe ʻana i ka lāʻau. |
| Nā hopena ma ka wahi inikini | ʻUlaʻula, ʻeha, a pehu paha ma kahi i inikini ʻia. |
ʻAʻole i hoʻokomo ʻia nā hopena ʻaoʻao āpau i loko o kēia papa inoa. Inā ʻike ʻoe i kekahi mea ʻē aʻe ma waho aʻe o kēia mau mea, e kamaʻilio me kāu kauka e pili ana i ia mea.
Pehea e mālama ai i ka lāʻau lapaʻau?
- E mālama i loko o ka pahu hau: E mālama i kēia lāʻau lapaʻau ma ka ʻāpana maʻamau o ka pahu hau. Mai mālama i loko o ka pahu hau.
- E mālama ʻia mai ka hiki ʻana aku o nā keiki: E mālama ʻia mai ka hiki ʻana aku o nā keiki liʻiliʻi a me nā holoholona.
- E mālama i loko o ka pahu kumu: ʻOi aku ka maikaʻi o ka mālama ʻana i ka lāʻau lapaʻau i loko o kāna pahu kumu e pale aku ai mai ka mālamalama.
- E hoʻolei aku i nā lāʻau lapaʻau i pau ka lā: Mai hoʻohana i nā lāʻau lapaʻau ma hope o kona lā pau. E noi i kāu kauka no ka ʻōlelo aʻoaʻo no ka hoʻolei palekana ʻana i nā lāʻau lapaʻau i pau ka lā a i ʻole nā lāʻau lapaʻau ʻaʻole pono hou.
Leka Lawe-Home
- ʻO ka Elapegademase kahi lāʻau lapaʻau pani enzyme e hoʻoikaika i ka ʻōnaehana pale, kahi i hoʻonāwaliwali ʻia e kahi maʻi genetic laha ʻole i kapa ʻia ʻo ADA deficiency.
- Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, e haʻi piha 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 hahai pono i ka papa kuhikuhi i kuhikuhi ʻia no ka lawe ʻana i ka lāʻau lapaʻau. Inā e poina ʻoe i kahi mahele lāʻau, mai lawe i ʻelua mau mahele lāʻau i ka manawa hoʻokahi.
- Inā loaʻa iā ʻoe nā hōʻailona maʻi ʻaleka koʻikoʻi e like me ka pehu ʻana o ka maka a i ʻole nā lehelehe, nā ʻōhū ʻili, a i ʻole ka paʻakikī o ka hanu ʻana, e ʻimi koke i ke kōkua lapaʻau.
- E mālama pono i ka lāʻau lapaʻau i loko o ka friji (ʻaʻole i loko o ka pahu hau) i kahi hiki ʻole i nā keiki ke loaʻa.
- Inā he mau nīnau a hopohopo paha kāu e pili ana i kēia lāʻau lapaʻau, mai makaʻu e kamaʻilio me kāu kauka e pili ana i ia mea.
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