I kekahi manawa, lilo ka ʻōnaehana pale e pale ana i ko mākou kino i mea hana nui a hoʻomaka e hoʻouka i kā mākou mau hunaola maikaʻi ponoʻī. Ua like ia me ka pūʻali koa e pale ana i ka ʻāina e hoʻouka ana i kona poʻe ponoʻī. He ʻano maʻi kakaikahi kēia akā koʻikoʻi loa i kapa ʻia ʻo Hemophagocytic Lymphohistiocytosis, a i ʻole HLH no ka pōkole. No laila, i kēia lā ke kamaʻilio nei mākou e pili ana i kahi lāʻau lapaʻau kūikawā a nā kauka e hoʻohana ai e kāohi i ka ʻōnaehana pale hana nui i nā manawa e like me kēia.
I ka ʻōlelo maʻalahi, he aha ʻo Emapalumab?
ʻO Emapalumab (inoa inoa ʻo Gamifant) kahi lāʻau i hoʻohana ʻia e mālama i ke ʻano Hemophagocytic Lymphohistiocytosis (HLH) , hiki ke hoʻoulu i ka mumū nui a me ka hōʻino ʻana i nā ʻiʻo ma ke kino holoʻokoʻa.
No laila, ʻo ka hana a kēia lāʻau lapaʻau, ʻo ia ke kāohi ʻana i kēia hana nui o kā mākou ʻōnaehana pale a hoʻolilo iā ia i hana maʻalahi iki. Ua like ia me ke kāohi ʻana i nā paleki ma kahi kaʻa e holo wikiwiki ana. Ke lohi ka ʻōnaehana pale ma kēia ʻano, ua emi ka mumū a me ka pōʻino i hana ʻia i loko o ke kino. Ma nā ʻōlelo lapaʻau, no kahi papa o nā lāʻau lapaʻau i kapa ʻia ʻo monoclonal antibodies kēia.
Hiki i kāu kauka ke kuhikuhi i kēia lāʻau lapaʻau no nā kūlana olakino ʻē aʻe, no laila inā he mau nīnau kāu, e nīnau i kāu kauka.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, he mea nui loa ia e haʻi i kāu kauka i kou mōʻaukala olakino piha. ʻOi loa aku inā loaʻa iā ʻoe kekahi o kēia mau kūlana:
- Inā loaʻa iā ʻoe kahi maʻi i kēia manawa: E haʻi i kāu kauka e pili ana i kekahi maʻi āu i loaʻa ai, e like me ke kuni, ka ʻū, a i ʻole ke anu . Hiki i kēia lāʻau lapaʻau ke hōʻemi i ka hiki o ka ʻōnaehana pale e hakakā i nā maʻi.
- Inā ua loaʻa iā ʻoe kahi lāʻau pale i kēia manawa a i ʻole e hoʻonohonoho ʻia ana e loaʻa i hoʻokahi i ka wā e hiki mai ana: Hiki i nā lāʻau pale, ʻoiai nā lāʻau pale ola, ke launa pū me kēia lāʻau lapaʻau.
- E pili ana i ka maʻi puʻupuʻu (TB):Inā ua loaʻa iā ʻoe ka maʻi puʻupuʻu ma mua, ua pili kokoke ʻoe me kahi kanaka me ka maʻi puʻupuʻu, a i ʻole ua loaʻa iā ʻoe kahi hoʻāʻo ʻili maikaʻi no ka maʻi puʻupuʻu, pono ʻoe e hōʻike i kēia.
- Nā maʻi ʻaleka ʻē aʻe: E haʻi i kāu kauka inā he maʻi ʻaleka kou i kēia lāʻau lapaʻau, ʻo Emapalumab, a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
- Inā hāpai ʻoe a i ʻole e hoʻāʻo ana e hāpai: E kamaʻilio me kāu kauka e pili ana i ka hopena o kēia lāʻau lapaʻau i ka hāpai ʻana.
- Inā he makuahine hānai ʻoe: E ʻimi i ka ʻōlelo aʻoaʻo lapaʻau e pili ana i ka hele ʻana o kēia lāʻau lapaʻau i kāu pēpē ma o ka waiū umauma.
Pehea ʻoe e loaʻa ai kēia lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home. He inikini ʻo Emapalumab i loko o kou kino ma o kahi aʻa ( infusion ). ʻO ke ʻano kēia, hāʻawi ʻia iā ʻoe ma kahi haukapila a i ʻole ke keʻena lapaʻau e nā limahana lapaʻau i aʻo ʻia.
Mea nui: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi no kekahi kumu.
Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki liʻiliʻi?
ʻAe, hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau no kekahi mau kūlana olakino, ʻoiai no nā pēpē hānau hou. Eia nō naʻe, ua hoʻoholo ʻia e ke kauka loea ma hope o ka nānā pono ʻana i ke kūlana o ke keiki. No laila, inā ʻoe e hāʻawi ana i kēia lāʻau lapaʻau i kahi keiki, e kūkākūkā pono me ke kauka.
He aha kāu e hana ai inā lawe nui ʻoe 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 overdose ʻoe, 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.
He aha inā e hala iaʻu kahi mahele o ka lāʻau lapaʻau?
He mea nui loa ka lawe ʻana i kāu lāʻau lapaʻau i ka manawa kūpono a ma nā lā i hoʻonohonoho ʻia i ka wā o kēia mālama ʻana. No laila, mai poina i nā manawa a kāu kauka. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i kāu lā i hoʻonohonoho ʻia, e kāhea koke aku i kāu kauka a i ʻole ka hui lapaʻau a e hoʻomaopopo iā lākou.
Nā mea e hoʻomanaʻo ai i ka wā o ka mālama ʻana
E nānā mau kāu kauka iā ʻoe i kou wā e lawe ana i kēia lāʻau.
- Hoʻāʻo TB: Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, e hoʻāʻo ʻia ʻoe no ka maʻi puʻupuʻu. Inā kuhikuhi kāu kauka i ka lāʻau no ka maʻi puʻupuʻu, pono ʻoe e hoʻomaka e lawe ma mua o ka hoʻomaka ʻana iā Emapalumab a hoʻopau iā ia no ka manawa piha i kuhikuhi ʻia.
- Ka pilikia o ka maʻi:Hiki i kēia lāʻau lapaʻau ke hōʻemi i ka hana o kāu ʻōnaehana pale, kahi e hoʻonui ai i kou pilikia o ka loaʻa ʻana o nā maʻi. No laila, inā loaʻa iā ʻoe ke kuni, ke anu, ka ʻāʻī ʻeha, a i ʻole nā hōʻailona like me ke anu , mai hoʻōla ponoʻī a kāhea koke i kāu kauka no ka ʻōlelo aʻo. E ho'āʻo e noho mamao aku mai ka poʻe maʻi.
Nā hopena ʻaoʻao e hiki mai ana ma muli o ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau lapaʻau ke hana i nā hopena ʻaoʻao. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau. Loaʻa paha i kekahi poʻe, a ʻaʻole loa paha i kekahi. Aia ma lalo iho kekahi o nā hopena ʻaoʻao hiki ke loaʻa.
| ʻAno o ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā mea e haʻi koke aku i kāu kauka | |
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| Nā Hōʻailona o ka Maʻi | Kuni, anu, ʻū, ʻeha ka puʻu, nā ʻeha ʻaʻole e ho'ōla ʻia, ʻeha i ka wā e mimi ai, a me ka ʻeha nui o ke kino. |
| Nā Hana Hoʻokomo | ʻEha ka umauma, paʻakikī ka hanu ʻana, maule, a i ʻole ka manaʻo poniuniu. |
| Nā hōʻailona koʻikoʻi ʻē aʻe | ʻEha ka ʻōpū, manaʻo luhi a nāwaliwali paha, nausea, luaʻi, kahe ka wai, a i ʻole ke kuni mau. |
| ʻAʻole maʻamau ka koʻikoʻi (akā e haʻi i kāu kauka inā hoʻomau ia) | |
| Nā hopena ʻaoʻao liʻiliʻi | Paʻa ka ʻōpū, ke kuni, ka maʻi kahe, ka ʻeha o ka ʻōpū. |
ʻAʻole i hoʻokomo ʻia nā hopena ʻaoʻao āpau i 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.
Leka Lawe-Home
- He lāʻau kūikawā ʻo Emalumab i hāʻawi ʻia e mālama i ka HLH, kahi maʻi koʻikoʻi i hoʻokumu ʻia e kahi ʻōnaehana pale kino hana nui.
- Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, e haʻi i kāu kauka i kāu ʻike olakino āpau, ʻoiai kekahi moʻolelo o nā maʻi, nā maʻi allergies, a me ka maʻi puʻupuʻu.
- I ka wā e mālama ai, e makaʻala loa i nā hōʻailona o ka maʻi, e like me ke kuni a me ke anu. Inā loaʻa iā ʻoe kekahi o kēia mau mea, e hoʻomaopopo koke i kāu kauka.
- Mai hōʻole i nā manawa i koho ʻia e kāu kauka. He mea nui loa ka lawe ʻana i kāu mau lāʻau lapaʻau i ka manawa kūpono.
- Hāʻawi wale ʻia kēia lāʻau lapaʻau ma ka haukapila a i ʻole ke keʻena lapaʻau a ʻaʻole hiki ke lawe ʻia i ka home.
- Inā he mau nīnau a kānalua paha kāu e pili ana i kēia lāʻau lapaʻau, e noi i kāu kauka no ka wehewehe ʻana.
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