Ke luhi nei ʻoe a me ka palaualelo i nā manawa a pau? Ke paʻakikī nei ʻoe i ka hanu ʻana ʻoiai ʻoe e hele wikiwiki ana? He mau hōʻailona paha kēia o ka anemia, a i ʻole ka mea a mākou e kapa pinepine ai he "hemahema koko." No kekahi poʻe, ua hoʻokumu ʻia kēia anemia e kahi maʻi genetic e like me Beta Thalassemia. No kekahi poʻe, hiki ke hoʻokumu ʻia e nā kūlana e like me Myelodysplastic Syndromes (MDS). No laila, pono pinepine nā poʻe e like me kēia i nā hoʻoili koko. Akā i kēia lā e kamaʻilio mākou e pili ana i kahi lāʻau pale hou a holomua i hiki mai e mālama i kēia mau kūlana. ʻO ia ʻo Luspatercept.
I ka ʻōlelo maʻalahi, he aha ʻo Luspatercept?
E noʻonoʻo ʻoe he hale hana ko kākou iwi iwi e hana ana i nā hunaola koko ʻulaʻula. Lawe nā hunaola koko ʻulaʻula i ka oxygen ma loko o ko kākou kino. ʻO lākou ka mea e hāʻawi mai ai i ke ola a me ka ikaika e hana ai i ka hana. I kēia manawa, i nā poʻe me nā maʻi e like me Beta Thalassemia a me Myelodysplastic Syndrome (MDS), ua hewa iki kēia hale hana. ʻO ia hoʻi, ʻaʻole lākou e hana i ka nui kūpono o nā hunaola koko ʻulaʻula.
ʻO kēia kahi e komo mai ai ka lāʻau lapaʻau ʻo Luspatercept (inoa hōʻailona: `REBLOZYL`). Ua like kēia lāʻau pale me kahi luna akamai. Hele ia i ka hale hana iwi iwi a ʻōlelo, "ʻAe, e hana pono kākou. E hana i nā hunaola koko ʻulaʻula maikaʻi, olakino, a piha." I ka ʻōlelo maʻalahi, ʻo ka hana a kēia lāʻau lapaʻau, ʻo ia ke kōkua i ko mākou kino e hana i nā hunaola koko ʻulaʻula olakino. Hāʻawi kēia iā mākou i kahi manawa kūpono e hōʻemi i ka nui o nā hoʻoili koko a i ʻole e hoʻōki loa iā lākou.
Pehea e hāʻawi ʻia ai kēia lāʻau pale?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe i ka home. He inikini subcutaneous ʻo Luspatercept. Ma hope o ke kuhikuhi ʻana a kāu kauka, e hāʻawi ʻia ʻoe i ka inikini e nā limahana lapaʻau i aʻo ʻia ma kahi haukapila a i ʻole ke keʻena lapaʻau. Pono ʻoe e loaʻa ka inikini ma kahi o kēlā me kēia ʻekolu pule. No laila, ʻaʻole pono ʻoe e hopohopo no ia mea, na lākou e mālama i ka manawa.
ʻO ka mea nui loa, ʻaʻole i ʻāpono ʻia kēia lāʻau lapaʻau no nā keiki, no laila i kēia manawa, e noʻonoʻo i kēia he lāʻau lapaʻau no nā pākeke.
Nā mea āu e haʻi aku ai i kāu kauka ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau
He mea nui loa ia e haʻi i kāu kauka e pili ana i kou mōʻaukala olakino piha ma mua o ka hoʻomaka ʻana i kekahi lāʻau lapaʻau. ʻOi loa ma mua o ka hoʻomaka ʻana iā Luspatercept, inā pili kekahi o kēia mau mea iā ʻoe, pono ʻoe e haʻi iā lākou e pili ana i ia mea.
| Ke kūlana āu e pono ai e hōʻike | No ke aha he mea nui? (Wehewehe maʻalahi) |
|---|---|
| Inā ua wehe ʻia kou ʻōpū | He ʻōkana ka spleen e kānana ana i ke koko a hana i nā hana he nui e pili ana i ke koko. ʻO kona nele hiki ke hoʻopilikia i ka mālama ʻana. |
| Inā he koko kiʻekiʻe kou | Hiki i kēia lāʻau lapaʻau ke hoʻonui i ke koko i kekahi manawa, no laila e makaʻala loa ke kauka i kēlā. |
| Inā ua loaʻa iā ʻoe nā ʻōpū koko ma mua | Aia kahi pilikia liʻiliʻi o nā ʻūpā koko i ka wā e hoʻohana ai i kēia lāʻau lapaʻau, no laila he mea nui loa inā ua loaʻa iā ʻoe kekahi ma mua. |
| Inā he mea puhi paka ʻoe | Hoʻonui ka puhipaka i ka pilikia o ke kāpili ʻana o ke koko, no laila he mea nui e haʻi i kāu kauka e pili ana i kēia ʻano. |
| Inā ʻoe e ho'āʻo nei e hāpai a hāpai paha | He mea nui loa kēia. Hiki i kēia lāʻau lapaʻau ke hōʻeha nui i ka pēpē i ka wā hāpai. No laila, he mea nui e hoʻohana i ka kaohi hānau kūpono i ka wā o ka mālama ʻana a no kekahi mau mahina ma hope o ka hoʻōki ʻana. |
| Inā hānai waiū ka makuahine i kāna keiki | ʻAʻole maopopo loa inā e hele kēia lāʻau lapaʻau i ka pēpē ma o ka waiū umauma, a he aha ka mea e hana ʻia inā hele ia. No laila, pono ʻoe e kamaʻilio me kāu kauka a hana i ka hoʻoholo maikaʻi loa. |
| Nā lāʻau lapaʻau ʻē aʻe, nā maʻi allergies | E haʻi i kāu kauka inā he mau maʻi ʻaleka kou iā Luspatercept a i ʻole kekahi mau lāʻau lapaʻau a meaʻai paha. Eia kekahi, e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau a me nā wikamina āu e lawe ai. |
Nā mea e hoʻomanaʻo ai i ka wā o ka mālama ʻana
E nānā pono ke kime lapaʻau iā ʻoe i ka manawa a pau e loaʻa ai iā ʻoe kēia lāʻau lapaʻau.
- Nā hoʻāʻo koko maʻamau: Lawe mau ʻia nā hāpana koko a hana ʻia nā hoʻāʻo e like me ka "Helu Koko piha" e nānā i kāu helu koko ʻulaʻula a inā paha e hana ana ka lāʻau lapaʻau.
- Ana o ke koko: E nānā ʻia kou koko i kēlā me kēia manawa āu e hele mai ai no ka lāʻau pale.
- Kaohi hānau: E like me ka mea i ʻōlelo ʻia ma mua, e kamaʻilio me kāu kauka e pili ana i kahi ala kūpono e pale aku ai i ka hāpai ʻana a e hahai pololei iā ia.
- Mai poina i kāu manawa i hoʻonohonoho ʻia: E hōʻoia e hele i kāu lā hoʻopili i hoʻonohonoho ʻia. Inā ʻaʻole hiki iā ʻoe ke hele, e kelepona i ke keʻena lapaʻau ma mua a e hoʻomaopopo iā lākou.
He aha ka mea e hana ai inā piʻi ka nui o ka lāʻau (overdose)?
Hāʻawi ʻia kēia ma ka haukapila, no laila ua haʻahaʻa loa ka manawa e hiki ai kēia. Eia nō naʻe, inā manaʻo ʻoe ua loaʻa iā ʻoe kekahi mea e like me kēia, pono ʻoe e hele koke i ka ʻOihana Pōpilikia (ETU) . A i ʻole e kelepona i ke Kikowaena ʻIke ʻAi ʻona Lahui ma ka Halemai Lahui ʻo Colombo no ka ʻōlelo aʻoaʻo.
E aʻo kākou e pili ana i nā hopena ʻaoʻao.
E like me nā lāʻau lapaʻau āpau, hiki iā Luspatercept ke hana i nā hopena ʻaoʻao. Eia naʻe, ʻaʻole loaʻa i nā kānaka a pau. He koʻikoʻi kekahi a pono e hōʻike koke ʻia i kāu kauka. He mea maʻamau kekahi a nalowale ma hope o kekahi mau lā.
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i kāu kauka | |
|---|---|
| Nā hopena maʻi ʻaleka | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, lehelehe, alelo a i ʻole ka puʻu, paʻakikī ke hanu. |
| Nā Hōʻailona o ke Koko Paʻa | ʻEha koke, pehu, ʻulaʻula i ka wāwae. ʻEha umauma, paʻakikī ka hanu ʻana. He mea weliweli loa kēia. |
| Hoʻonui ʻia ke kaomi koko | ʻEha poʻo nui koke, poniuniu, loli ka ʻike. |
| Nā pilikia aʻalolo | ʻEha nui ke kua, mae a nāwaliwali paha nā lālā, nalowale ke kaulike, nalowale ke kaohi ʻana i ka ʻōpū a i ʻole ka mimi ʻōpū. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| ʻEha kino | ʻEha i nā iwi, nā hono, a me nā ʻiʻo. |
| Luhi a me ka poniuniu | Luhi, poniuniu. |
| ʻEha poʻo a me ka ʻeha ʻōpū | ʻEha poʻo, ʻehaʻeha a ʻeha paha ka ʻōpū. |
E hoʻomanaʻo, inā ʻike ʻoe i kekahi mea ʻē ʻole ma kēia papa inoa, mai makaʻu e haʻi i kāu kauka e pili ana i ia mea. ʻO ʻoe ka mea ʻike maikaʻi loa i kou kino.
Leka Lawe-Home
- He lāʻau injectable holomua ʻo Luspatercept i hoʻohana ʻia e mālama i ka anemia i hoʻokumu ʻia e nā kūlana e like me ka beta thalassemia a me MDS.
- Hoʻoulu kēia i ka iwi iwi o ko mākou kino a hoʻonui i ka hana ʻana o nā hunaola koko ʻulaʻula olakino.
- Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau e nā limahana i aʻo ʻia.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, pono ʻoe e haʻi i kāu kauka i kāu ʻike olakino āpau (ʻoi aku ka hāpai ʻana, nā ʻūpā koko, a me ke koko kiʻekiʻe).
- E hōʻoia e hoʻohana i ka kaohi hānau kūpono e pale aku i ka hāpai ʻana i ka wā o ka mālama ʻana a no kekahi mau mahina ma hope.
- Inā ʻike ʻoe i kekahi mau hōʻailona o kahi hopena ʻino, e like me nā ʻūpā koko a i ʻole nā maʻi ʻaleka koʻikoʻi, e ʻimi koke i ke kōkua lapaʻau.
- Inā he mau nīnau kāu e pili ana i kēia lāʻau lapaʻau, mai kānalua e nīnau i kāu kauka.
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