Loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai ka maʻi ʻo Gaucher? Inā pēlā, ua lohe paha ʻoe i ka lāʻau pale i kapa ʻia ʻo 'Imiglucerase'. Kūʻai pinepine ʻia kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo 'Cerezyme' ma ko mākou ʻāina. No laila, i kēia lā e kamaʻilio wale mākou e pili ana i ke ʻano o kēia lāʻau lapaʻau, nā mea e hana ʻia me ia, a me nā mea e makaʻala ai i ka wā e lawe ai i kēia lāʻau.
He aha ke ʻano lāʻau lapaʻau ʻo Imiglucerase?
I ka ʻōlelo maʻalahi, ʻo ka maʻi Gaucher kahi maʻi genetic i hoʻokumu ʻia e ka nele o kahi enzyme a ko mākou kino e hana maoli ai. Ke nele kēia enzyme, hoʻomaka nā mea momona e hōʻiliʻili i loko o kekahi o nā cell o ke kino. Hiki i kēia ke hōʻino i nā ʻōpū e like me nā iwi, ka spleen, a me ke akepaʻa.
He enzyme synthetic ʻo Imiglucerase e pani ana i ka enzyme nele. Ke hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano intravenous, lawe ia i ka hana o ka enzyme kūlohelohe a kāohi i ka hōʻiliʻili ʻana o ka momona i loko o nā cell. Hiki i kēia ke hōʻemi nui i nā hōʻailona.
Akā he mea nui loa kēia: ʻO Imiglucerase kahi lāʻau lapaʻau e kaohi ai i nā hōʻailona o ka maʻi Gaucher, ʻaʻole ia he lāʻau lapaʻau no ka maʻi.
Nā mea e haʻi aku i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
Ma mua o kou hoʻomaka ʻana i kēia lāʻau lapaʻau, pono ʻoe e kūkākūkā pono i kēia mau mea me kāu kauka.
- Loaʻa iā ʻoe kahi hopena alerika i ka Imiglucerase a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a i ʻole nā mea mālama?
- Ke hāpai nei ʻoe a ke manaʻolana nei paha e hāpai ?
- He makuahine hānai waiū anei ʻoe?
Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau iā ʻoe a pehea e hoʻomau ai.
Pehea e hāʻawi ʻia ai ka lāʻau lapaʻau?
Hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano he infusion i loko o kahi aʻa, e like me ka saline. ʻAʻole kēia he mea hiki iā ʻoe ke hana ma ka home. Hāʻawi ʻia ia ma kahi haukapila a i ʻole ke keʻena lapaʻau e kahi loea lapaʻau i aʻo ʻia. Hāʻawi pinepine ʻia i kēlā me kēia ʻelua pule.
Hiki ke hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki?
ʻAe, ua ʻōlelo ʻia kēia lāʻau lapaʻau no nā keiki ma luna o 2 mau makahiki i kekahi mau hihia i koho ʻia. Eia nō naʻe, aia kekahi mau mea e makaʻala ai i ka hāʻawi ʻana i nā keiki. No laila, inā ua kuhikuhi ʻia kēia lāʻau i kāu keiki, e kamaʻilio me kāu kauka lapaʻau e pili ana i ia mea a e hoʻomaopopo pono i nā mea āpau.
He aha inā ua hoʻonui hewa ʻia ka nui o ka lāʻau lapaʻau?
ʻOiai ua hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila, ua haʻahaʻa loa ka pilikia o ka overdose. Eia nō naʻe, inā manaʻo ʻoe ua hana ʻia kekahi mea, 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 inā e hala wau i hoʻokahi lā e lawe ai i ka lāʻau lapaʻau?
He mea nui loa ka loaʻa ʻana o kēia lāʻau lapaʻau i ka lā a me ka manawa i hoʻonohonoho ʻia. Penei e hiki ai iā ʻoe ke mālama i nā pae enzyme i loko o ke kino ma kekahi ʻano. Inā ʻaʻole hiki iā ʻoe ke loaʻa ka lāʻau lapaʻau i ka lā i hoʻonohonoho ʻia, e hoʻomaopopo koke i kāu kauka. A laila e aʻo aku ʻo ia iā ʻoe i ka lā aʻe e loaʻa ai ka lāʻau lapaʻau.
Nā mea ʻē aʻe e launa pū me kēia lāʻau lapaʻau
Hiki i kekahi mau lāʻau lapaʻau ke launa pū me kēia lāʻau lapaʻau. Eia kekahi laʻana, he lāʻau lapaʻau i kapa ʻia ʻo miglustat. Eia naʻe, ʻaʻole i piha kēia papa inoa.
No laila e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe ai (me nā huaora, nā lāʻau lapaʻau lāʻau, a me nā mea hoʻohui meaʻai). Pono ʻoe e haʻi i kāu kauka inā ʻoe e puhipaka, inu waiʻona, a hoʻohana paha i nā lāʻau lapaʻau kū ʻole i ke kānāwai.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i ka Imiglucerase ke hana i nā hopena ʻaoʻao i kekahi poʻe. Hiki ke hoʻokaʻawale ʻia kēia mau mea i ʻelua mau ʻāpana nui. Pono e hōʻike koke ʻia kekahi o lākou i kāu kauka, aʻo kekahi, ʻoiai ʻaʻole koʻikoʻi pinepine, pono e hōʻike ʻia inā hoʻomau lākou.
| ʻAno hopena ʻaoʻao a me ka wehewehe ʻana |
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| Nā hopena ʻaoʻao e pono e hōʻike koke ʻia i kāu kauka |
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| Nā hopena ʻaoʻao e pono e hōʻike ʻia i ke kauka inā hoʻomau lākou a hoʻopilikia paha |
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Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē aʻe i ʻōlelo ʻole ʻia ma kēia papa inoa, e kamaʻilio pū me kāu kauka e pili ana iā lākou.
Leka Lawe-Home
- ʻO Imiglucerase kahi lāʻau lapaʻau e kaohi ai i nā hōʻailona o ka maʻi o Gaucher, akā ʻaʻole ia he lāʻau lapaʻau no ka maʻi.
- Hāʻawi ʻia kēia lāʻau lapaʻau ma ke ʻano he hoʻokomo ʻana i loko o kahi aa koko ma ka haukapila a i ʻole ke keʻena lapaʻau.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i nā maʻi allergies āu e loaʻa nei a me nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- Inā loaʻa iā ʻoe kekahi mau hopena koʻikoʻi e like me ka paʻakikī o ka hanu ʻana a i ʻole ka pehu ʻana o ka maka, e ʻimi koke i ke kōkua lapaʻau.
- He mea nui loa ka loaʻa ʻana o ka lāʻau lapaʻau i ka manawa kūpono. Inā ʻoe e hala i kahi lā no kekahi kumu, e hoʻomaopopo i kāu kauka.
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