Ke haʻi aku kāu kauka iā ʻoe a i ʻole kāu keiki he maʻi kou i kapa ʻia ʻo Hypophosphatasia (HPP), e ʻōlelo ʻia paha ʻoe e hoʻohana i kahi lāʻau pale i kapa ʻia ʻo Asfotase alfa (Strensiq) ma ke ʻano he lāʻau lapaʻau. He mea maʻamau ke manaʻo iki i ka makaʻu a me ke kaumaha ke lohe ʻoe e pili ana i kahi lāʻau pale a pehea e lawe ai i kēlā me kēia lā. Akā, mai hopohopo. Ma kēia ʻatikala, e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau, pehea e hoʻohana ai, a me nā mea e makaʻala ai.
He aha maoli ka Asfotase alfa (Strensiq)?
I ka ʻōlelo maʻalahi, ʻaʻole kēia e like me ka lāʻau lapaʻau a mākou e hoʻohana mau ai. Ma ke ʻano i kapa ʻia ʻo Hypophosphatasia (HPP), aia ka emi ʻana a i ʻole ka nalowale ʻana o kahi enzyme e pono ai no ka ulu olakino o nā iwi a me nā niho i loko o ko mākou kino. No laila, ʻo Asfotase alfa kahi lāʻau lapaʻau e hāʻawi i ke kino me kēlā enzyme i emi mai waho. He lāʻau lapaʻau kēia e kāohi ana i nā hōʻailona a kōkua iā ʻoe e ola i kahi ola olakino, ma mua o ka hoʻōla piha ʻana i ka maʻi. I nā huaʻōlelo ʻē aʻe, he lāʻau lapaʻau kēia e kāohi ana i ka maʻi, ʻaʻole he lāʻau lapaʻau.
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 i kēia mau pilikia me kāu kauka.
- Inā he mau pōhaku puʻupaʻa kou a i ʻole nā maʻi ʻē aʻe e pili ana i ka puʻupaʻa.
- Inā he maʻi ʻaleka kou i ka Asfotase alfa a i ʻole kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, a mea hoʻoluʻu paha.
- Inā hāpai ʻoe a i ʻole e kali ana i kahi pēpē .
- Inā he makuahine hānai waiū ʻoe.
He mea nui loa kēia ʻike no ke kauka e hāʻawi iā ʻoe i ka lāʻau kūpono a palekana loa.
Pehea e hoʻohana pono ai i ka lāʻau pale?
Hāʻawi ʻia kēia lāʻau pale ma ke ʻano he inikini ma lalo o ka ʻili. Mai hopohopo i kēia. E wehewehe pono ke kauka a kahu maʻi paha i ke ala kūpono e hāʻawi ai iā ʻoe i kēia. No laila e loaʻa iā ʻoe ke aʻo e pono ai a hiki i kou hiki ke hana iā ʻoe iho.
- E lawe i ka nui kūpono, i ka manawa kūpono: E lawe i ka nui kūpono, i ka manawa kūpono, e like me ke kauoha a kāu kauka. Mai hoʻonui i ka nui a hoʻohana pinepine paha ma mua o ke kauoha.
- Nā nila a me nā syringe i hoʻohana ʻia: He mea nui loa kēia mau mea. Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala. Aia kahi pahu kūikawā no lākou, i kapa ʻia he 'pahu ʻoi'. Inā ʻaʻohe āu, e noi i kāu kauka a kahu maʻi paha no hoʻokahi.
- E hoʻohana no nā keiki:Hoʻohana ʻia kēia lāʻau lapaʻau no nā kamaliʻi ʻōpio a me nā pēpē ma ke ʻōlelo aʻo a ke kauka. Eia nō naʻe, aia nā hana palekana kūikawā. E kamaʻilio me kāu kauka keiki e pili ana i ia mea.
- He aha inā ʻoe e lawe nui i ka lāʻau lapaʻau? Inā lawe hewa ʻoe i nā lāʻau lapaʻau ma mua o kou manaʻo, e kāhea koke i ke Kikowaena ʻIke ʻAihue Lahui ma ka Halemai Lahui ʻo Colombo . A i ʻole e hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
- He aha inā e poina ʻoe i kahi lāʻau lapaʻau? Inā e poina ʻoe i kahi lāʻau lapaʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. Eia nō naʻe, inā kokoke ka manawa no kāu lāʻau lapaʻau aʻe, e kāpae i ka lāʻau lapaʻau i poina a lawe i kāu lāʻau lapaʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i ʻelua lāʻau lapaʻau i ka manawa hoʻokahi.
Ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi.
He aha nā hopena ʻaoʻao e hiki ke loaʻa mai ka lawe ʻana i ka lāʻau lapaʻau?
E like me nā lāʻau lapaʻau āpau, hiki i ka Asfotase alfa ke hana i kekahi mau hopena ʻaoʻao. He koʻikoʻi kekahi o kēia mau mea, a he mea maʻamau kekahi. He mea nui e makaʻala i kēia mau mea.
| Ka hopena ʻaoʻao | Wehewehena |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i kāu kauka | |
| Nā hopena alerika | Nā hōʻailona e like me ka ʻulaʻula o ka ʻili, ka maneʻo, ka pehu ʻana o ka maka, nā lehelehe, a i ʻole ke alelo. |
| Koko i loko o ka mimi | ʻEha ka ʻōpū ma lalo a i ʻole ke kua, ʻeha i ka wā e mimi ai, a me ke koko i loko o ka mimi. |
| Nā loli o ka ʻike | ʻIke pōwehiwehi a i ʻole nā loli ʻē aʻe. |
| Kuni a i ʻole ke anu | Kuni a ʻūlū paha me ke kumu ʻole. |
| Ka luaʻi ʻana | Ka luaʻi mau ʻana. |
| Nā hopena ʻaoʻao ʻaʻole i koʻikoʻi pinepine (akā pono e hōʻike i ke kauka inā hoʻomau lākou) | |
| ʻEha poʻo, nausea, hoʻomaha ʻole | ʻO ka maʻamau, hele mai kēia mau mea a hele aku. |
| ʻEha/ʻulaʻula ma kahi i inikini ʻia | ʻEha, palapū, ʻulaʻula, a pehu paha ma kahi i ini ʻia. |
| Ka mānoanoa a i ʻole ka lua ʻana o ka ʻili | ʻO ka hoʻokomo pinepine ʻana i kahi hoʻokomo like hiki ke hoʻomānoanoa i ka ʻili a i ʻole e ulu ai nā lua. No laila, e hoʻohuli i kahi i hoʻokomo ʻia ai. |
Pehea e mālama pono ai i ka lāʻau lapaʻau?
He mea nui loa ka mālama pono ʻana i kēia lāʻau.
- E mālama i loko o ka pahu hau: E mālama mau i nā ʻōmole lāʻau lapaʻau i wehe ʻole ʻia ma kahi mahana ma waena o 2 a me 8 degere Celsius, ʻo ia hoʻi, ma ka ʻāpana maʻamau o ka pahu hau.
- Mai hoʻopaʻahau: Mai mālama i loko o ka pahu hau. Mai ʻae i ka lāʻau lapaʻau e hoʻopaʻahau.
- Mai lūlū: Mai lūlū i ka ʻōmole ma mua o ka hoʻohana ʻana.
- E pale mai ka mālamalama: E mālama i ka ʻōmole lāʻau lapaʻau i loko o kona pahu a hiki i ka manawa e hoʻohana ai a pale iā ia mai ka mālamalama.
- Ma hope o ka hoʻohana ʻana: Pono e hoʻohana ʻia i loko o hoʻokahi hola ma hope o ka lawe ʻana mai loko mai o ka friji.
- Inā he lāʻau lapaʻau i koe: Inā he lāʻau lapaʻau i koe mai kahi ʻōmole i wehe ʻia, e hoʻolei aku. Eia kekahi, e hoʻolei aku i nā ʻōmole lāʻau lapaʻau i pau ka lā me ka hoʻohana ʻole ʻana.
Leka Lawe-Home
- He lāʻau lapaʻau enzyme kūikawā ʻo Asfotase alfa no Hypophosphatasia (HPP). Hoʻomalu ia i ka maʻi, akā ʻaʻole ia e ho'ōla loa.
- E hahai pono i nā kuhikuhi a kāu kauka. E lawe i ka nui kūpono i ka manawa kūpono.
- Mai hōʻalo i nā manawa i koho ʻia e ke kauka a me nā mea e like me nā hoʻāʻo koko, nā hoʻāʻo puʻupaʻa, a me nā hoʻokolohua maka.
- E makaʻala i nā hopena ʻaoʻao koʻikoʻi (nā maʻi ʻaleka, nā loli o ka ʻike, ke koko i loko o ka mimi). Inā ʻike ʻoe i kekahi o kēia mau hōʻailona, e haʻi koke i kāu kauka.
- E mālama pono i ka lāʻau lapaʻau i loko o ka pahu hau. Mai kaʻana like i kēia lāʻau lapaʻau me kekahi.
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