Loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai ka maʻi Gaucher? Inā pēlā, ua haʻi aku paha kāu kauka iā ʻoe e pili ana i kahi lāʻau i kapa ʻia ʻo Velaglucerase Alfa. ʻO VPRIV ka inoa inoa no kēia. No ka mea he inoa maʻamau ʻole ia, nui paha kāu mau nīnau e like me, "He aha kēia lāʻau?" a "He aha ka mea e hana ʻia me kēia?" Mai makaʻu i kekahi mea. I kēia lā, e kamaʻilio mākou e pili ana i kēia lāʻau ma ke ʻano maʻalahi loa, pehea e hana ai, a me nā mea e makaʻala ai.
He aha ka Velaglucerase Alfa?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau kēia i hāʻawi ʻia e mālama i ka maʻi Gaucher. I kēia manawa, e nānā, loaʻa ka maʻi Gaucher i ka wā e hoʻemi ʻia ai a nalowale paha kahi enzyme i hana maoli ʻia i loko o ko mākou kino. Hoʻopau kēia enzyme a wehe i nā lipids , kahi ʻano momona i loaʻa i loko o kā mākou mau cell.
No laila he aha ka mea e hana ai ke nalowale kēia enzyme? Hoʻomaka kēlā ʻano momona, a lipid paha, e hōʻiliʻili ma nā ʻāpana like ʻole o ko mākou kino, ʻoi aku hoʻi ma nā wahi e like me ka spleen , ke akepaʻa , a me nā iwi . Pēlā e ʻike ʻia ai nā hōʻailona o ka maʻi Gaucher.
ʻO Velaglucerase Alfa kēlā enzyme nalowale. Ke hāʻawi ʻia kēia lāʻau lapaʻau i ke kino ma ke ʻano he injection, hele ia a hana i ka hana o kēlā enzyme nalowale. ʻO ia hoʻi, hoʻemi ia i ka nui o nā lipids i hōʻiliʻili ʻia. A laila e emi mālie ana nā hōʻailona. Ua like ia me ka hāʻawi hou ʻana i ko mākou kino i kahi mea kaua nalowale.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i kēia lāʻau lapaʻau
He mea nui loa ka kamaʻilio ākea ʻana me kāu kauka ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau. Inā pili kekahi o kēia mau mea iā ʻoe, pono ʻoe e haʻi aku i kāu kauka .
- E pili ana i kāu mau maʻi ʻaleka : Inā he mau maʻi ʻaleka kou, inā paha i kēia lāʻau lapaʻau i kapa ʻia ʻo Velaglucerase, kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, nā mea hoʻoluʻu, a i ʻole nā mea mālama, e ʻoluʻolu e haʻi mai iā mākou e pili ana.
- Inā hāpai ʻoe a i ʻole e hoʻāʻo ana e hāpai: E hōʻoia e hoʻomaopopo i kāu kauka e pili ana i kēia.
- Inā he makuahine hānai ʻoe: He mea nui loa e haʻi aku i kāu kauka e pili ana i kēia.
He mea nui loa ia no kou palekana e hāʻawi i kēia ʻike i ke kauka. No laila e haʻi i nā mea āpau me ka hūnā ʻole i kekahi mea.
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻAʻole kēia he lāʻau lapaʻau hiki iā ʻoe ke lawe ma ka home. Hāʻawi ʻia kēia lāʻau lapaʻau i loko o ke kino ma ke ʻano he inikini ( infusion ) i loko o kahi aa . Hāʻawi ʻia kēia lāʻau lapaʻau ma kahi haukapila a i ʻole ke keʻena lapaʻau, ma lalo o ka nānā ʻana a ke kauka a i ʻole nā limahana kahu maʻi i aʻo ʻia.
Ke hāʻawi nei ʻoe i kēia i nā keiki liʻiliʻi?
ʻAe, i kekahi manawa hāʻawi ʻia kēia lāʻau lapaʻau i nā keiki ʻōpiopio e like me 4 mau makahiki. Akā hana ʻia me ka mālama kūikawā a me nā hana akahele. Inā ua kuhikuhi ʻia kēia lāʻau lapaʻau i kāu keiki, e kamaʻilio me kāu kauka pediatric e pili ana i ia mea a e ʻike i nā kikoʻī.
He aha inā lawe nui wau 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 lawe nui ʻoe i kēia lāʻau lapaʻau, 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.
Mea nui: Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi.
He aha kāu e hana ai inā e hala ʻoe i kahi manawa hoʻopaʻa lāʻau lapaʻau?
He lāʻau lapaʻau kēia e pono e lawe mau ʻia. No laila, he mea nui loa ke hele i nā manawa a ke kauka a loaʻa ka lāʻau lapaʻau i nā lā āna i ʻōlelo ai iā ʻoe. Inā no kekahi kumu ʻaʻole hiki iā ʻoe ke hele i ka lā i hoʻonohonoho ʻia, e kelepona koke i kāu kauka a i ʻole ke keʻena lapaʻau a e haʻi iā lākou . E haʻi lākou iā ʻoe i ka mea e hana ai ma hope.
Hiki iā ia ke launa pū me nā lāʻau lapaʻau ʻē aʻe?
Ma keʻano laulā, ʻaʻole i hōʻike ʻia kēia lāʻau lapaʻau e hoʻopili nui me nā lāʻau lapaʻau ʻē aʻe.
Akā, mai haʻi wale aku i kāu kauka e pili ana i nā mea āu e hoʻohana nei. No kou palekana ponoʻī, e hāʻawi i kāu kauka i kahi papa inoa piha o nā mea āpau āu e hoʻohana nei.
- Nā lāʻau lapaʻau ʻē aʻe āu e lawe nei
- Nā lāʻau lapaʻau ʻole i kauoha ʻia
- Nā huahana Ayurvedic a i ʻole nā huahana lāʻau lapaʻau `(nā mea kanu)`
- Nā huaora a i ʻole nā mea hoʻohui meaʻai ʻē aʻe
- Eia kekahi, e hoʻomaopopo e pili ana i ka puhipaka ʻana, inu waiʻona, a hoʻohana paha i nā lāʻau ʻē aʻe.
Nā mea e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
ʻOiai e lawe ana i kēia lāʻau lapaʻau, e nānā mau kāu kauka iā ʻoe e ʻike pehea ʻoe e hana nei. E hōʻoia e hele i kēlā mau lā. E haʻi i kāu kauka inā ʻaʻole e hoʻomaikaʻi kāu mau hōʻailona a i ʻole inā e ʻoi aku ka ʻino.
I kekahi manawa hiki i kēia lāʻau lapaʻau ke hana i nā hopena alerika koʻikoʻi.I mea e hōʻemi ai i kēia pilikia, hiki i kāu kauka ke hāʻawi iā ʻoe i nā lāʻau lapaʻau ʻē aʻe (e like me ka pheniridine) ma mua o ka hāʻawi ʻana iā ʻoe i kēia lāʻau pale. No laila e hahai pono i kā lākou mau kuhikuhi.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai kēia lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke hana i kekahi mau hopena ʻaoʻao. Akā, ʻaʻole loaʻa i nā kānaka a pau. E nānā kākou i nā mea nui e makaʻala ai.
| ʻAno o ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Inā loaʻa iā ʻoe kēia mau hōʻailona, e haʻi koke aku i kāu kauka. | |
| Nā hopena alerika | Nā mea e like me ka ʻulaʻula o ka ʻili, ka maneʻo, ka pehu ʻana o ka maka, nā lehelehe, ke alelo, a me ka puʻu paha. |
| E haʻi i kāu kauka inā hoʻomau a hoʻopilikia paha. | |
| Nā hopena ʻaoʻao maʻamau |
|
ʻAʻole i hoʻokomo ʻia nā hopena ʻaoʻao āpau i loko o 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.
Ma hea ʻoe e mālama ai i ka lāʻau lapaʻau?
ʻAʻole pono ʻoe e hopohopo no kēia. No ka mea, ʻaʻole ʻoe e ʻae ʻia e lawe i kēia lāʻau lapaʻau i ka home. Mālama palekana ʻia ma ka haukapila a i ʻole ke keʻena lapaʻau, ma lalo o ka kaohi mahana kūpono.
Leka Lawe-Home
- He lāʻau lapaʻau ʻo Velaglucerase Alfa e pani ai i kahi enzyme i nalowale i loko o ke kino e mālama ai i ka maʻi Gaucher.
- Hāʻawi ʻia kēia ma ke ʻano he inikini ma o kahi aa koko ma kahi haukapila a i ʻole ke keʻena lapaʻau.
- Ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau, e haʻi i kāu kauka i kāu ʻike olakino āpau, me nā maʻi allergies āu e loaʻa nei a me nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- Inā loaʻa iā ʻoe nā hōʻailona maʻi ʻaleka (e like me ka ʻulaʻula o ka ʻili, ka pehu ʻana) ma hope o ka lawe ʻana i ka lāʻau lapaʻau, e hoʻomaopopo koke i kāu kauka.
- Mai poina i kāu mau lā lapaʻau i hoʻonohonoho ʻia. Inā ʻaʻole hiki iā ʻoe ke hele, e hoʻomaopopo mai iā mākou ma mua.
- E kamaʻilio ākea me kāu kauka e pili ana i nā nīnau, nā makaʻu, a i ʻole nā kānalua āu e pili ana i kēia lāʻau lapaʻau.
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