Ua haʻi ʻia anei ʻoe a i ʻole kekahi āu i ʻike ai e ke kauka he maʻi Fabry ko lākou? He maʻi genetic kakaikahi kēia. ʻO kekahi lāʻau lapaʻau kikoʻī i hoʻohana ʻia e mālama i nā hōʻailona o kēia maʻi ua kapa ʻia ʻo Migalastat. No laila i kēia lā, e kamaʻilio kākou e pili ana i kēia lāʻau lapaʻau, ke ala kūpono e hoʻohana ai, nā hana palekana e hana ai, a me nā hopena ʻaoʻao āpau, ma ke ʻano maʻalahi, e like me kahi hoaaloha maikaʻi.
He aha ke ʻano lāʻau lapaʻau ʻo Migalastat?
I ka ʻōlelo maʻalahi, ʻo Migalastat kahi lāʻau lapaʻau i hoʻohana ʻia e mālama i ka maʻi Fabry. Loaʻa nō hoʻi ia ma ka mākeke ma lalo o ka inoa ʻo Galafold. Maanei pono ʻoe e hoʻomanaʻo i kahi kiko koʻikoʻi loa.
ʻAʻole kēia he lāʻau lapaʻau no ka maʻi Fabry. Eia nō naʻe, hiki i kēia lāʻau lapaʻau ke kōkua i ka kaohi ʻana i ka pōʻino i hana ʻia e ka maʻi a hoʻokele i nā hōʻailona, e ʻae iā ʻoe e ola i kahi ola ʻoluʻolu a maʻamau.
Hiki ke hoʻohana ʻia kēia lāʻau lapaʻau no nā kūlana ʻē aʻe ma mua o ka maʻi Fabry. Inā he mau nīnau kāu e pili ana i kēia, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me kāu kauka.
Nā mea e haʻi aku i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
Ma mua o ke kuhikuhi ʻana iā Migalastat iā ʻoe, he mea nui e ʻike pono kāu kauka i kou kūlana olakino. No laila, inā pili kekahi o kēia mau mea iā ʻoe, e hōʻoia e haʻi i kāu kauka e pili ana i ia mea.
- Inā he maʻi puʻupaʻa kou: Inā he maʻi pili i ka puʻupaʻa kou, he mea nui loa e hōʻike.
- Inā he maʻi ʻoe i kekahi mea: E haʻi mai iā mākou inā he maʻi ʻoe, ʻaʻole wale iā Migalastat, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, mea hoʻoluʻu meaʻai, a mea hoʻomalu paha.
- Inā hāpai ʻoe a i ʻole e hoʻāʻo ana e hāpai: He mea nui e hoʻomaopopo i kāu kauka e pili ana i kēia, no ka mea, pono ʻoe e makaʻala loa i ka wā e hoʻohana ai i kekahi lāʻau lapaʻau i kēia mau manawa.
- Inā he makuahine hānai ʻoe: E kūkākūkā i kēia me kāu kauka no ka mea hiki i nā lāʻau lapaʻau ke hoʻopilikia i kāu pēpē ma o ka waiū umauma.
Pehea e hoʻohana pono ʻia ai ka lāʻau lapaʻau?
No ka hoʻokō ʻana i ka hopena maikaʻi loa mai ka lāʻau lapaʻau, he mea nui loa ia e hoʻohana pono ia e like me ke kuhikuhi ʻia.
- Pehea e lawe ai: E lawe i kēia lāʻau lapaʻau ma ka waha me ke aniani wai.
- E hahai i nā ʻōlelo aʻoaʻo lapaʻau: E hahai i nā kuhikuhi i hāʻawi ʻia e kāu kauka a i ʻole ma ka pūʻolo lāʻau lapaʻau e like me ke kuhikuhi ʻana.
- ʻŌpū ʻole: He mea nui loa kēia. Pono e lawe ʻia kēia lāʻau lapaʻau ma ka ʻōpū ʻole.Ma ka ʻōpū ʻole. I ka pololei, ʻaʻole ʻoe e ʻai hou no ʻelua hola ma hope o ka ʻai ʻana a i ʻole no ʻelua hola ma hope o ka lawe ʻana i ka lāʻau. ʻAʻohe pilikia i ka inu ʻana i nā wai moakaka e like me ka wai i loko o kēia manawa. Mai lawe i kēia lāʻau me ka meaʻai.
- Mai uhaʻi a kuʻi paha i ka papa: Mai ʻoki, kuʻi, a nau paha i kēia capsule lāʻau. E ale holoʻokoʻa.
- E lawe i ka lāʻau i ka manawa kūpono: E lawe i ka lāʻau i nā manawa i kuhikuhi ʻia. E pale i ka lawe ʻana ma mua o ka mea i ʻōlelo ʻia e ke kauka.
- Mai ho'ōki i ka lawe ʻana i ka lāʻau lapaʻau me ka ʻole o ke aʻo ʻana a ke kauka: Mai ho'ōki i ka lawe ʻana i ka lāʻau lapaʻau me ka ʻole o ke aʻo ʻana a kāu kauka.
I ka hāʻawi ʻana i nā keiki
Pono e akahele loa i ka hāʻawi ʻana i kēia lāʻau lapaʻau i nā keiki liʻiliʻi. No laila, e kamaʻilio me kāu kauka lapaʻau e pili ana i ia mea a e hahai i kāna ʻōlelo aʻo.
Ka nui o ka lāʻau
Inā manaʻo ʻoe ua lawe nui ʻoe i ka lāʻau lapaʻau, mai hopohopo a kāhea koke aku i ke Kikowaena ʻIke Poisons Lahui ma ka Halemai Lahui ʻo Colombo . A i ʻole, e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa i ka hikiwawe loa.
He aha kaʻu e hana ai inā e poina iaʻu kahi mahele o ka lāʻau lapaʻau?
He mea nui loa ka lawe ʻana i kēia lāʻau lapaʻau e like me ke kauoha, me ka ʻole o ka haʻalele ʻana i kekahi lāʻau. Eia nō naʻe, inā e poina ʻoe i kahi lāʻau, mai hopohopo. E kūkākūkā me kāu kauka no ka ʻōlelo aʻo no ka mea e hana ai ma hope. Mai kuhi wale.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kekahi poʻe ke loaʻa nā hopena ʻaoʻao i ka wā e lawe ai iā Migalastat. ʻOiai ʻaʻole koʻikoʻi ka hapa nui o kēia mau mea, aia kekahi mau hihia kahi e pono ai ʻoe e makaʻala loa.
| ʻAno o ka hopena ʻaoʻao | Nā ʻano |
|---|---|
| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i kāu kauka | |
| Nā hopena maʻi ʻaleka | Nā hōʻailona e like me ka huhū o ka ʻili, ka maneʻo a i ʻole ka ʻulaʻula, ka pehu ʻana o ka maka, nā lehelehe a i ʻole ke alelo. |
| Nā hopena ʻaoʻao e pono e hōʻike ʻia i ke kauka inā hoʻomau lākou a hoʻopilikia paha | |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | Ka maʻi kahe, ʻeha ʻōpū, nausea. |
| Nā maʻi maʻamau ʻē aʻe | ʻEha poʻo. |
He mea nui: ʻAʻole paha i loko o kēia papa inoa nā hopena ʻaoʻao āpau. Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe i helu ʻole ʻia ma ʻaneʻi, e kāhea aku i kāu kauka no ka ʻōlelo aʻo lapaʻau.
Pehea e mālama ʻia ai ka lāʻau lapaʻau?
- E mālama i kahi mamao aku mai nā keiki: E mālama i ka lāʻau lapaʻau ma kahi palekana mai ka hiki ʻana aku o nā keiki liʻiliʻi .
- Mahana: E mālama ma ka mahana o ka lumi (ma waena o 15 a me 30 kekelē Celsius).
- Nā lāʻau lapaʻau i pau: E hoʻolei aku i nā lāʻau lapaʻau i hala ko lākou lā palena pau.
He hōʻuluʻulu manaʻo wale nō kēia ʻatikala no ka lāʻau Migalastat. Inā he mau nīnau hou aku kāu e pili ana i kēia, e ʻoluʻolu e kūkākūkā ākea me kāu kauka a hoʻoponopono i nā hopohopo.
Leka Lawe-Home
- He lāʻau lapaʻau ʻo Migalastat i hoʻohana ʻia e kāohi i ka maʻi Fabry, akā ʻaʻole ia he lāʻau lapaʻau.
- Pono e lawe ʻia kēia lāʻau lapaʻau ma ka ʻōpū ʻole (2 mau hola ma mua a i ʻole 2 mau hola ma hope o ka ʻai ʻana).
- Ma mua o ka lawe ʻana i ka lāʻau lapaʻau, e hoʻomaopopo i kāu kauka e pili ana i kou maʻi puʻupaʻa, nā maʻi allergies, a me nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- Inā loaʻa iā ʻoe kekahi mau hōʻailona maʻi e like me ka ʻili ʻulaʻula a i ʻole ka pehu ʻana, e ʻimi koke i ke kōkua lapaʻau.
- Mai hoʻōki i ka lāʻau lapaʻau a hoʻololi paha i ka dosage me ka ʻole o ke aʻo ʻana a kāu kauka.
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