Makemake pū ʻoe e ʻike e pili ana i ka inikini Emicizumab? E kamaʻilio kākou e pili ana!

He pilikia nō hoʻi kou me ke kahe pinepine ʻana o ke koko ma muli o ka Hemophilia A? He paʻakikī anei iā ʻoe ke hoʻōki i ke kahe ʻana o ke koko mai kahi ʻoki liʻiliʻi? Inā pēlā, i kēia lā e kamaʻilio mākou e pili ana i kahi lāʻau hou e hiki ke hana i kahi ʻokoʻa nui i kou ola, e kōkua ana i ka kaohi ʻana i ke kahe ʻana o ke koko. ʻO Emicizumab ka inoa o kēia lāʻau. No laila, e nānā kākou i nā kikoʻī e pili ana i ia mea?

He aha ke ʻano lāʻau lapaʻau ʻo Emicizumab?

I ka ʻōlelo maʻalahi, ʻo Emicizumab kahi inikini kūikawā e kōkua i ka poʻe me ka hemophilia A e pale i ke kahe ʻana o ke koko a i ʻole e kāohi i ke kahe ʻana o ke koko inā e kahe ana ke koko. Ua ʻike anei ʻoe i ka wā e loaʻa ai iā ʻoe ka hemophilia A, nele kou kino i kahi protein koʻikoʻi (factor VIII) e kōkua ana i kou koko e hoʻopaʻa? No laila hana kēia lāʻau lapaʻau ma ke kōkua ʻana e hoʻopiha i kēlā hemahema ma kahi ʻano ʻokoʻa iki, e kōkua ana i kou koko e hoʻopaʻa. Ua like ia me ka hoʻololi ʻana i kahi alahaka haʻihaʻi me kekahi mea ʻē aʻe.

Hiki ke hoʻohana ʻia kēia lāʻau lapaʻau e kāu kauka i kekahi manawa no nā kumu lapaʻau ʻē aʻe. No laila, inā makemake ʻoe e ʻike pono i ke kumu i kuhikuhi ʻia ai kēia lāʻau lapaʻau nou, e ʻoluʻolu e nīnau i kāu kauka a i ʻole ka hale kūʻai lāʻau lapaʻau kahi āu e kūʻai ai i ka lāʻau.

ʻO kēia lāʻau lapaʻau, ʻo Emicizumab, ka mea i loaʻa pinepine ʻia ma ka mākeke ma lalo o ka inoa ʻo Hemlibra . Ua lohe paha ʻoe i kēlā inoa ma mua.

He aha nā mea nui e pono iaʻu e haʻi aku i kaʻu kauka ma mua o ka hoʻohana ʻana i kēia lāʻau lapaʻau?

ʻAe, he mea nui loa kēia. Ma mua o kou hoʻomaka ʻana i kēia inikini emicizumab, aia kekahi mau mea e pono ai ʻoe e haʻi aku i kāu hui mālama. No ka mea, pono lākou e noʻonoʻo e pili ana i kou palekana.

• Inā loaʻa iā ʻoe kahi maʻi alerika i kēia lāʻau lapaʻau, ʻo Emicizumab, a i ʻole kekahi o kāna mau mea hoʻohui, e ʻoluʻolu e haʻi mua mai iā mākou.
• Eia kekahi, inā he mau maʻi ʻaleka kou i nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, nā kala, a i ʻole nā ​​mea hoʻomalu, e ʻoluʻolu e hoʻomaopopo mai iā mākou. ʻOiai inā he mea liʻiliʻi ia, he mea maikaʻi ke hoʻomaopopo mai iā mākou.
• Pono ʻoe e haʻi pono i kēia inā ʻoe e hāpai nei, a inā paha ʻoe e manaʻo nei e hāpai i ka wā e hiki mai ana .
• Inā he makuahine hānai ʻoe, e hoʻomaopopo i kāu kauka e pili ana i kēlā.

E lilo kēia ʻike i mea kōkua nui i kāu kauka i ke koho ʻana i ka lāʻau lapaʻau kūpono a palekana loa nāu.

Pehea pololei kaʻu e hoʻohana ai i kēia lāʻau lapaʻau?

He mea kēia e hoʻomaopopo ai. He inikini subcutaneous ʻo Emicizumab. ʻO ia hoʻi, ua inikini ʻia i loko o ka papa momona ma lalo o ka ʻili, ʻaʻole i loko o ka ʻiʻo. Ua ʻike paha ʻoe i nā inikini insulin no ka maʻi diabetes, he like ia.

Mai hopohopo, e aʻo maopopo aku kāu kauka, kahu maʻi, a i ʻole kekahi limahana olakino i aʻo ʻia iā ʻoe pehea e hoʻomākaukau ai i kēia lāʻau lapaʻau a pehea e hāʻawi ai iā ʻoe iho (a i ʻole kekahi e kōkua iā ʻoe) i kēia inikini. Pono ʻoe e hana pololei e like me kā lākou e ʻōlelo aku ai iā ʻoe.

• He mea nui loa ia e lawe i kāu lāʻau lapaʻau i nā manawa maʻamau. E lawe e like me ka ʻōlelo a kāu kauka iā ʻoe, i kēlā me kēia mau lā, i nā manawa kikoʻī.
• Mai lawe ʻoi aku ma mua o ka nui i kau ʻia e kāu kauka, a i ʻole e lawe pinepine.

He mea nui loa: Mai hoʻolei i kāu mau nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala. Hiki i ka hana ʻana pēlā ke hoʻoweliweli i ka mea nāna e lawe i ka ʻōpala a i kekahi mea ʻē aʻe. Aia kahi pahu ʻoi kūikawā i hoʻolālā ʻia e paʻa i nā mea ʻoi hiki ke pani paʻa ʻia. E noi i kāu kauka lāʻau a kauka paha no hoʻokahi. E haʻi lākou iā ʻoe pehea e hoʻolei palekana ai ke piha.

He aha ka hopena inā hāʻawi ʻoe i kēia lāʻau lapaʻau i nā keiki liʻiliʻi?

Inā hoʻoholo kāu kauka e pono e hāʻawi ʻia kāu keiki i ka emicizumab no ka mea he hemophilia A kona, e kamaʻilio me kāu kauka keiki e pili ana i ia mea. ʻOiai hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki i kekahi mau hihia kūikawā, aia kekahi mau mea e makaʻala ai, ma muli o ko lākou mau makahiki. E wehewehe kāu kauka i kēia mau mea āpau iā ʻoe.

He aha kāu e hana ai inā lawe ʻoe i ka nui o ka lāʻau lapaʻau?

Inā hana kēia, ʻo ia hoʻi, inā manaʻo ʻoe ua lawe nui ʻoe i kēia lāʻau lapaʻau, mai hoʻokaʻulua a kāhea koke i ke kikowaena hoʻomalu lāʻau make kokoke loa a i ʻole ka lumi pilikia o ka haukapila. A i ʻole e hele koke i laila. He mea nui loa ka hana ʻana i ka manawa kūpono.

ʻO ka mea maikaʻi loa e hoʻomanaʻo ai, ʻo kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like i kāu lāʻau lapaʻau me nā poʻe ʻē aʻe no kekahi kumu, ʻoiai inā loaʻa iā lākou ka maʻi like me ʻoe.

He aha kāu e hana ai inā e hala ʻoe i kahi manawa hoʻopaʻa lāʻau lapaʻau?

ʻĀ, hiki ke hana ʻia. Poina i nā kānaka a pau ke lawe i kā lākou lāʻau lapaʻau i kekahi manawa. Inā poina ʻoe i kahi mahele o Emicizumab, e lawe koke i ka wā e hoʻomanaʻo ai ʻoe. Eia nō naʻe, inā kokoke ka manawa no kāu mahele aʻe ke hoʻomanaʻo ʻoe (no ka laʻana, inā i loko o 3 mau lā o kāu mahele aʻe o kahi lāʻau lapaʻau āu e lawe ai i kēlā me kēia 7 lā), e kāpae i ka mahele i poina a lawe i ka mahele aʻe i ka manawa maʻamau. Mai lawe pālua i ka mahele, ʻo ia hoʻi, pono ʻoe e lawe i ka mahele i poina a me ka mahele aʻe i ka manawa like. Inā ʻaʻole ʻoe maopopo, e nīnau i kāu kauka a kauka lāʻau paha.

Aia kekahi mau lāʻau ʻē aʻe e hiki ke launa pū me kēia lāʻau?

ʻAe, he mea maikaʻi kēia e ʻike. Aia kekahi mau lāʻau lapaʻau e hiki ke launa pū me ka emicizumab ke lawe pū ʻia. I ka ʻōlelo maʻalahi, ke lawe pū ʻia kēia mau lāʻau lapaʻau ʻelua, hiki iā lākou ke hoʻopilikia i ka pono o kekahi i kekahi, a i ʻole hiki iā lākou ke hoʻonui i nā hopena ʻaoʻao.

ʻO ka mea nui, pono e akahele i ka wā e hoʻohana ai i ka emicizumab me kekahi mau lāʻau lapaʻau ʻē aʻe no ka hemophilia. Eia kekahi mau laʻana:

• Hoʻohuihui paʻakikī prothrombin i hoʻāla ʻia (aPCC)
• Factor VIIa, recombinant
• Kumu VIII

Aia kahi pilikia o kahi maʻi koʻikoʻi i kapa ʻia ʻo thrombotic microangiopathy (TMA) a me nā ʻūpā koko ke lawe ʻia kēia lāʻau me emicizumab. No laila, inā makemake ʻoe i kahi lāʻau ʻē aʻe no kahi hanana kahe koko koke, he mea nui e haʻi i kāu kauka e lawe ana ʻoe i ka emicizumab.

ʻAʻole piha kēia papa inoa. No laila, he mea nui e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe ai - ʻaʻole wale nā ​​​​mea i kuhikuhi ʻia e kāu kauka, akā, ʻo nā huaora, nā lāʻau lapaʻau lāʻau, nā mea hoʻomaha ʻeha, a me nā mea hoʻohui meaʻai āu e kūʻai ai mai ka hale kūʻai lāʻau. Eia kekahi, inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau kū ʻole i ke kānāwai, he mea maikaʻi loa ia nou e haʻi i kāu kauka . Hiki i kekahi mau mea ke launa pū me kāu mau lāʻau lapaʻau.

He aha hou aʻe kaʻu e pono ai e makaʻala i ka wā e lawe ai i kēia lāʻau?

ʻOiai ʻoe e lawe ana iā Emicizumab, e kauoha paha kāu kauka i nā hoʻāʻo koko like ʻole e nānā i kou olakino. Hoʻohana ʻia kēia mau hoʻāʻo e nānā inā e hana ana ka lāʻau lapaʻau a inā he mau pilikia. No laila, he mea nui e hana mau i kēia mau hoʻāʻo.

He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?

E noʻonoʻo e pili ana i ia mea, hiki i kekahi lāʻau lapaʻau a mākou e lawe ai ke hana i nā hopena ʻaoʻao liʻiliʻi, ʻeā? He mea maʻamau kēlā. Hiki iā Emicizumab ke hana iā lākou. Akā, mai hopohopo, ʻo ka hapa nui o ka manawa ʻaʻole koʻikoʻi kēia mau mea a e emi iho i loko o kekahi mau lā. Eia nō naʻe, aia kekahi mau mea e pono ai mākou e makaʻala nui.

ʻO nā hopena ʻaoʻao āu e haʻi koke aku ai i kāu kauka a mea mālama ola paha:

Inā ʻike ʻoe i kēia mau hōʻailona, ​​e haʻi koke aku i ke kauka, no ka mea, hiki ke koʻikoʻi.

• Nā hopena maʻi ʻaleka: ʻulaʻula koke o ka ʻili, nā hives, ka pehu ʻana o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu (hiki ke pilikia i ka hanu ʻana).
• Nā hōʻailona o ke koko ʻūlū: Hiki ke lilo i mea weliweli loa kēia. No laila e makaʻala i kēia mau hōʻailona:
• Ka paʻakikī o ka hanu ʻana a i ʻole ka ʻeha o ka umauma.
• Ka emi koke ʻana a i ʻole ka loli ʻana o ka nui o ka mimi āu e hoʻomaloʻo ai.
• Nā loli o ka ʻike (e.g. ʻike pōwehiwehi koke, ʻike pālua).
• He ʻeha poʻo nui, koke, a koʻikoʻi.
• ʻEha, pehu, ʻulaʻula, a mehana paha ke pā i ka lima a i ʻole ka wāwae (ʻoi aku hoʻi ma ka ʻāpana groin).
• ʻEha nui o ka ʻōpū.
• Ka mae koke ʻana a i ʻole ka nāwaliwali o ka maka, ka lima, a i ʻole ka wāwae (ʻoi aku hoʻi ma kekahi ʻaoʻao o ke kino).
• Paʻakikī i ka ʻōlelo ʻana a i ʻole ka manaʻo e like me nā huaʻōlelo ua hūpō.
• Melemele o nā keʻokeʻo o nā maka a i ʻole ka ʻili (jaundice).

Inā ʻike ʻoe i kekahi mea e like me kēia, pono ʻoe e ʻimi koke i ke kōkua lapaʻau.

Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine, akā pono e hōʻike i kāu kauka inā hoʻomau a hoʻopilikia paha lākou iā ʻoe:

Hoʻopau pinepine kēia i loko o kekahi mau lā, akā inā hoʻomau lākou a inā paha e hōʻeha nui lākou iā ʻoe, e haʻi i kāu kauka .

• Ka maʻi pākī
• Kuni me ka manaʻo o ka nāwaliwali
• ʻEha poʻo
• ʻEha hui
• ʻEha nā ʻiʻo, e like me ka ʻeha ʻana o nā ʻiʻo
• Aia paha kekahi ʻeha, ʻulaʻula, maneʻo, a pehu iki paha ma kahi i hāʻawi ʻia ai ka inikini. Hoʻomaha pinepine kēia i loko o hoʻokahi a ʻelua paha lā.

ʻOiai inā ʻaʻole i ʻōlelo ʻia ma kēia papa inoa, inā ʻike ʻoe i kekahi mea hou a ʻano ʻē paha ma hope o ka lawe ʻana i kēia lāʻau lapaʻau, mai makaʻu e kamaʻilio me kāu kauka e pili ana i ia mea.

Pehea e mālama pono ai i kēia lāʻau lapaʻau?

He mea nui hoʻi e mālama pono i kāu lāʻau lapaʻau.

• E mālama mau i kēia lāʻau lapaʻau ma kahi hiki ʻole i nā keiki liʻiliʻi ke hoʻopā aku a ma kahi hiki ʻole iā lākou ke ʻike.
• Inā ʻoe e hoʻohana ana i kēia lāʻau lapaʻau ma ka home, e loaʻa iā ʻoe nā ʻōlelo aʻoaʻo maopopo no ka mālama ʻana (e laʻa, i loko o ka pahu hau a i ʻole ma ka mahana o ka lumi). E hahai pono i kēlā mau ʻōlelo aʻoaʻo.
• Mai hoʻohana i kekahi lāʻau lapaʻau i hala ka lā palena pau i paʻi ʻia ma ka ʻōmole a i ʻole ka pahu. E nīnau i kāu kauka lāʻau pehea e hoʻolei pono ai.

ʻO ka mea hope loa, kekahi mau mea nui (Leka Lawe-Home)

ʻAe, mai nā mea a mākou i kūkākūkā ai, ke lana nei koʻu manaʻo ua maopopo iā ʻoe ka ʻōkuhi Emicizumab. Eia kekahi mau mea nui e hoʻomanaʻo ai:

• He lāʻau lapaʻau koʻikoʻi a maikaʻi hoʻi ʻo Emicizumab e hiki ke kōkua i ka kaohi ʻana i kou kahe koko inā loaʻa iā ʻoe ka hemophilia A.
• He mea nui e lawe i kēia lāʻau lapaʻau i ka manawa kūpono a me ka nui kūpono, e like me ka ʻōlelo a ke kauka.
• Inā he mau nīnau a hopohopo paha kāu e pili ana i kēia lāʻau lapaʻau, pehea e hoʻohana ai, nā hopena ʻaoʻao, a i ʻole kekahi mea ʻē aʻe, mai makaʻu a hilahila paha e nīnau i kāu kauka, kahu maʻi, mea kūʻai lāʻau lapaʻau, a i ʻole kekahi mea lawelawe olakino ʻē aʻe. Aia lākou ma laila e kōkua iā ʻoe.
• E makaʻala mau i nā hopena ʻaoʻao.Inā loaʻa iā ʻoe kekahi o nā hopena ʻaoʻao koʻikoʻi a mākou i kūkākūkā ai, e ʻimi koke i ke aʻo lapaʻau.
• E hoʻolei pono i nā nila a me nā syringe i hoʻohana ʻia i loko o kahi pahu ʻoi.
• Mai kaʻana like i kāu lāʻau lapaʻau me nā poʻe ʻē aʻe.

E hoʻomanaʻo, ua hāʻawi wale kēia ʻatikala iā ʻoe i kekahi mau ʻike kumu. He ʻokoʻa nā kānaka a pau, no laila ʻo kāu kauka wale nō ka mea ʻike i ka mea maikaʻi loa no kou kūlana. No laila, e kamaʻilio mau me ia a e hahai i kāna ʻōlelo aʻo. Ke makemake nei iā ʻoe i ke olakino maikaʻi!

ʻEmicizumab , Hemlibra, Hemophilia A, Hemophilia A, kahe koko, inikini, nā hopena ʻaoʻao, ʻili ma lalo o ka ʻili, ipu ʻoi