He aha ka mea e hana ai inā e oki ke kino a i ʻole e pau ka hana ʻana i kahi enzyme kūikawā e kōkua ai i ka hoʻoikaika ʻana i ko kākou mau iwi a me nā niho? ʻAʻole ia he mea maʻalahi e like me kou manaʻo. He maʻi genetic kakaikahi ka Hypophosphatasia (HPP). No laila, ʻo kahi lāʻau pale kūikawā i hāʻawi ʻia e mālama i kēia maʻi ua kapa ʻia ʻo Asfotase Alfa. I kēia lā, e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau, pehea e hoʻohana ai, nā mea e makaʻala ai, a me nā mea ʻē aʻe ma ke ʻano maʻalahi loa.
He aha ka mea e hana maoli me kēia lāʻau lapaʻau?
I ka ʻōlelo maʻalahi, he lāʻau lapaʻau hoʻololi enzyme kēia. E noʻonoʻo e pili ana i ia mea, no ka hana pono ʻana o kekahi mea i loko o ko kākou kino, pono iā ia kahi enzyme e pono ai. ʻO ke kanaka me HPP he hemahema o kēia enzyme e kōkua ana i ke kūkulu ʻana i nā iwi a me nā niho ikaika. No laila, ʻo ka hana a ka inikini Asfotase Alfa, ʻo ia ka hāʻawi ʻana i ke kino i ka enzyme i nele mai waho. Ua like kēia me ke kau ʻana i ka ʻaila i loko o ke kaʻa ke pau ka ʻaila. Kōkua ka enzyme mai kēia inikini i ke kino e kūkulu hou i nā iwi a me nā niho ikaika. Loaʻa pū kēia lāʻau lapaʻau ma ka mākeke ma lalo o ka inoa inoa ʻo Strensiq.
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka lawe ʻana i ka lāʻau lapaʻau
Ma mua o ka hoʻomaka ʻana i kēia lāʻau lapaʻau, no kou palekana ponoʻī, aia kekahi mau mea āu e hoʻomaopopo pono ai i kāu kauka. E hōʻoia e haʻi i kēia mau mea.
- Nā maʻi ʻaleka : Inā he maʻi ʻaleka kou i kēia lāʻau Asfotase Alfa, kekahi lāʻau ʻē aʻe, meaʻai, mea hoʻomalu, a i ʻole nā mea hoʻoluʻu, e ʻoluʻolu e haʻi mua mai iā mākou.
- Hāpai keiki : Inā hāpai ʻoe, a i ʻole e hoʻolālā ana e loaʻa koke kahi pēpē, e haʻi i kāu kauka e pili ana i ia mea.
- Inā he makuahine hānai waiū ʻoe: Inā he makuahine hānai waiū ʻoe, pono ʻoe e hoʻomaopopo i ke kauka.
ʻO ka hāʻawi ʻana i kēia ʻike i kāu kauka e kōkua nui iā ia e mālama iā ʻoe me ka palekana a me ka pololei.
Pehea e hoʻohana ʻia ai kēia lāʻau pale?
Hāʻawi ʻia kēia lāʻau pale ma o ka inikini ʻana ma lalo o ka ʻili .). Akā, ʻaʻohe kumu e makaʻu ai i kēia. E aʻo ʻia ʻoe pehea e hoʻomākaukau ai i kēia lāʻau pale a pehea e hoʻokomo pono ai iā ʻoe iho. E hāʻawi ke kauka a i ʻole nā kahu maʻi iā ʻoe i kahi hoʻonohonoho maopopo o nā kuhikuhi e pili ana i ia mea.
- E lawe i ka lāʻau lapaʻau āu i loaʻa ai e like me ke kuhikuhi ʻana ma ka lepili, ma ke ʻano kūpono, a i ka manawa kūpono.
- E hoʻomau i ka hoʻohana ʻana i kēia lāʻau a hiki i ka wā e ʻōlelo ai kāu kauka e hoʻōki.
- E heluhelu pono i nā kuhikuhi i hele mai me ka lāʻau lapaʻau. Inā he mau nīnau kāu, mai kānalua e nīnau i kāu kauka.
Pehea ʻoe e hoʻolei aku ai i nā nila a me nā syringe i hoʻohana ʻia?
He mea nui loa kēia. Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala. Hiki i ka hana ʻana pēlā ke hoʻoweliweli i nā poʻe ʻē aʻe. Pono ʻoe e hoʻohana i kahi pahu kūikawā no kēia mau mea, i kapa ʻia he 'pahu ʻoi'. Inā ʻaʻohe āu, e nīnau i kāu kauka pehea e loaʻa ai.
He aha ka mea e hana ai inā piʻi ka nui o ka lāʻau?
Inā manaʻo ʻoe ua lawe ʻoe i kahi overdose, e hele koke i ka Emergency Department (ETU) kokoke loa. A i ʻole, e kelepona i ke National Poisons Information Centre ma ka Colombo National Hospital. He pilikia kēia a he mea nui e hana koke.
He aha inā e hala iaʻu kahi mahele lāʻau lapaʻau?
Mai hopohopo. Inā e poina ʻoe i kahi lāʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. Eia nō naʻe, inā kokoke ka manawa no kāu lāʻau aʻe, e kāpae i ka lāʻau i poina a lawe i kāu lāʻau aʻe i ka manawa maʻamau. Mai lawe pālua i ka lāʻau e hoʻopiha ai i kahi lāʻau i poina.
Nā mea e makaʻala ai i ka wā e lawe ai i ka lāʻau lapaʻau
He mea nui loa ka mālama ʻana i ka pilina pili me kāu kauka i loko o kēia lāʻau lapaʻau.
- Nā nānā maʻamau: E kamaʻilio pinepine me kāu kauka e ʻike inā e hoʻomaikaʻi ana a emi ana paha kāu mau hōʻailona, a pehea e pane ai kou kino i ka lāʻau lapaʻau. E hele i nā keʻena lapaʻau i nā lā āna i kuhikuhi ai.
- Nā hoʻāʻo lapaʻau : ʻOiai ʻoe e lawe ana i kēia lāʻau lapaʻau, pono paha kāu kauka e hana i nā hoʻāʻo koko a me ka mimi e nānā i ka hana maikaʻi o kou mau puʻupaʻa a e nānā i nā mea ʻē aʻe. Mai haʻalele i kēia mau hoʻāʻo.
- Nānā ʻIke : Hiki ke nānā ʻia kou ʻike ma mua a i ka wā o ka mālama ʻana. Inā ʻike ʻoe i kekahi mau loli i kou ʻike (e like me ka ʻike pōwehiwehi a emi paha), e haʻi koke i kāu kauka.
- Ka Papa Inoa o nā Maʻi: Hiki ke kono ʻia ʻoe e hui pū me kahi papa inoa lōʻihi o nā maʻi me HPP. E kōkua kēia i ka hōʻiliʻili ʻana i ka ʻikepili e hoʻomaopopo maikaʻi i ka maʻi a me kona mālama ʻana. Hiki iā ʻoe ke nīnau i kāu kauka no ka ʻike hou aku.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia lāʻau lapaʻau ke hana i kekahi mau hopena ʻaoʻao. Akā, ʻaʻole i loaʻa i nā kānaka a pau. E hoʻokaʻawale kākou i kēia mau mea i ʻelua mau ʻano.
| Ka hopena ʻaoʻao | Ka wehewehe a me nā mea e hana ai |
|---|---|
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
| Nā hopena alerika | E ʻimi koke i ke kōkua lapaʻau inā ʻike ʻoe i nā hōʻailona e like me ka ʻulaʻula o ka ʻili, ka maneʻo, ka pehu ʻana o ka maka, nā lehelehe, ke alelo, a i ʻole ka puʻu, a i ʻole ka paʻakikī o ka hanu ʻana. |
| Nā pōhaku puʻupaʻa | Koko i loko o ka mimi, ʻeha a paʻakikī paha i ka mimi ʻana, ʻeha ma ke kua haʻahaʻa a i ʻole ka ʻūhā. E haʻi i kāu kauka inā loaʻa iā ʻoe kekahi o kēia mau mea. |
| Ka nalowale ʻana o ka ʻike a i ʻole ka loli ʻana | Inā ʻike ʻoe i kekahi mau loli koke i kou ʻike, e hoʻomaopopo koke i kāu kauka. |
| Nā mea i maʻa mau ʻole i ka weliweli, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā loli ma kahi i hoʻokomo ʻia | Hiki ke ʻike ʻia ka ʻeha, ka ʻulaʻula, ka maneʻo, a i ʻole ka loli ʻana o ka ʻili ma kahi i ini ʻia. |
| Lipodystrophy | Ka mānoanoa, ka paʻakikī, a i ʻole ka ʻeha o ka ʻiʻo ma lalo o ka ʻili ma kahi i inikini ʻia. Inā hoʻomau kēia, e hoʻomaopopo i kāu kauka. |
Pehea e mālama ai i ka lāʻau lapaʻau?
He mea nui loa ka mālama pono ʻana i kēia lāʻau.
- E mālama ʻia mai nā keiki a me nā holoholona.
- E mālama i loko o ka pahu hau. Akā, mai hoʻokomo i loko o ka pahu hau. Mai hoʻokuʻu i ka lāʻau lapaʻau e paʻahau.
- E pale mai ka mālamalama. No laila, e mālama i loko o ka pahu kumu a hiki i ka wā e hoʻohana ai.
- Ma hope o ka wehe ʻana mai loko mai o ka pahu hau, e hāʻawi i ka lāʻau pale i loko o 3 mau hola .
- E hoʻolei aku i nā lāʻau lapaʻau i pau ka lā. E noi i kāu kauka no ka ʻōlelo aʻo no ka hoʻolei palekana ʻana i nā lāʻau lapaʻau i pau ka lā a i ʻole nā lāʻau lapaʻau i pono ʻole ʻia.
Leka Lawe-Home
- He lāʻau pale hoʻololi enzyme ka Asfotase Alfa e mālama ai i ke kūlana genetic ʻo Hypophosphatasia (HPP).
- E haʻi i kāu kauka e pili ana i kāu mau maʻi allergies a me nā kūlana olakino ma mua o ka hoʻomaka ʻana i ka lāʻau lapaʻau.
- E aʻo pehea e hoʻokomo pololei ai i ka lāʻau pale a hoʻolei palekana i nā nila i hoʻohana ʻia.
- E ʻimi koke i ke kōkua lapaʻau inā loaʻa iā ʻoe kekahi mau hopena ʻino e like me ka pehu ʻana o ka maka, ka paʻakikī o ka hanu ʻana, a i ʻole nā loli o ka ʻike.
- Mai hōʻalo i nā hoʻokolohua a me nā lā o ke keʻena lapaʻau i kuhikuhi ʻia e ke kauka.
- E mālama mau i ka lāʻau lapaʻau i loko o ka friji, i pale ʻia mai ka mālamalama, a i loko o ka pahu kumu.
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