Loaʻa iā ʻoe ʻo Phenylketonuria, a i ʻole PKU e like me kā mākou e ʻike nei, kahi kūlana e hoʻonui ai i ka phenylalanine amino acid i loko o kou koko? No laila, ua ʻike paha ʻoe i ka ʻoiaʻiʻo ʻo Pegvaliase kahi injection kūikawā i hāʻawi ʻia e kāohi i kēia pae. He nui paha kāu mau nīnau i loko o kou manaʻo e pili ana i kēia lāʻau lapaʻau. Mai hopohopo, i kēia lā e kamaʻilio mākou e pili ana i kēia lāʻau lapaʻau, kona pono, nā hopena ʻaoʻao a pehea e hoʻohana palekana ai ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.
I ka ʻōlelo maʻalahi, he aha kēia lāʻau lapaʻau i kapa ʻia ʻo Pegvaliase?
ʻO kēia ka wehewehe maʻalahi loa. Loaʻa i ka poʻe me PKU kahi kūlana kahi i hiki ʻole ai i ko lākou kino ke wāwahi pono, a i ʻole e hoʻoheheʻe, i kahi mea i kapa ʻia ʻo phenylalanine. A laila hōʻiliʻili kēia i loko o ke koko a hiki ke hōʻino i ka lolo a me ka ʻōnaehana nerve.
No laila, ʻo ka hana a ka inikini Pegvaliase , ʻo ia ke kōkua i kou kino. ʻO ia hoʻi, kōkua ia i kou kino e wāwahi i kēia phenylalanine i hiki ʻole i kou kino ke wāwahi. A laila e pau ke kūkulu ʻana i loko o kou koko a ua kāohi ʻia nā pae. Kūʻai pinepine ʻia kēia lāʻau lapaʻau ma lalo o ka inoa inoa ʻo Palynziq .
Nā mea e pono ai ʻoe e haʻi i kāu kauka ma mua o ka hoʻohana ʻana i kēia lāʻau lapaʻau
ʻAe, ma mua o kou hoʻomaka ʻana i kēia lāʻau lapaʻau, pono ʻoe e kamaʻilio me kāu kauka e pili ana i kēia mau mea. Mai hūnā i kēia mau mea, no ka mea, he mea nui loa kēia no kou palekana.
- Nā maʻi ʻaleka: Inā loaʻa iā ʻoe kekahi maʻi ʻaleka, ʻaʻole wale iā Pegvaliase, akā i kekahi lāʻau lapaʻau ʻē aʻe, meaʻai, kala, a mea hoʻomalu paha, e hōʻoia e haʻi i kāu kauka e pili ana i ia mea.
- Hāpai: Inā hāpai ʻoe a i ʻole e hoʻolālā ana e loaʻa koke kahi pēpē, pono ʻoe e haʻi i kāu kauka.
- Inā he makuahine hānai waiū ʻoe: Inā he makuahine hānai waiū ʻoe, e hoʻomaopopo pono i kāu pēpē e pili ana i kēlā.
Ma muli o kēia ʻike, e hoʻoholo ke kauka inā kūpono kēia lāʻau lapaʻau iā ʻoe a ʻaʻole paha, a me nā hana palekana e pono ai ke hāʻawi ʻia.
Pehea e hoʻohana pono ai i ka lāʻau lapaʻau?
He ʻano inikini kēia hiki iā ʻoe ke inikini ma lalo o ka ʻili ma ka home. Akā, mai hopohopo. E wehewehe pono ana kāu kauka a i ʻole kekahi kahu maʻi i aʻo ʻia iā ʻoe pehea e hāʻawi ai a pehea e hoʻomākaukau ai i ka lāʻau.
- E lawe wale i ka nui i kuhikuhi ʻia: E lawe i ka nui i kuhikuhi ʻia e kāu kauka, pololei i ka manawa i kuhikuhi ʻia. Mai hoʻōki i ka lawe ʻana i ka lāʻau a hiki i ka wā e ʻōlelo ai kāu kauka iā ʻoe e hoʻōki.
- Ka hoʻolei palekana ʻana i nā nila a me nā syringe: He mea nui loa kēia. Mai hoʻolei i nā nila a me nā syringe i hoʻohana ʻia i loko o ka ʻōpala.Pono e waiho ʻia i loko o kahi pahu plastik mānoanoa kūikawā (pahu ʻoi). Inā ʻaʻohe āu, e nīnau i kāu kauka pehea e loaʻa ai.
- Nā Kuhikuhi Kūikawā: E loaʻa iā ʻoe kahi pepa kuhikuhi kūikawā (MedGuide) ke hāʻawi ʻia kēia lāʻau lapaʻau iā ʻoe. E heluhelu pono i kēlā me kēia manawa. Mai hilahila e nīnau i kāu kauka inā he mea āu e maopopo ʻole ai.
E hoʻomanaʻo, ua kuhikuhi ʻia kēia lāʻau lapaʻau nou wale nō. Mai kaʻana like me kekahi.
Nā mea e makaʻala nui ai i ka wā e lawe ai i ka lāʻau lapaʻau
E nānā mau ana kāu kauka i kou kūlana i kou wā e lawe ana i kēia lāʻau. Hiki i kēia ke komo pū me ka hana koko.
He mea nui loa: E makaʻala i nā maʻi allergies koʻikoʻi!
ʻO kahi mea e makaʻala loa ai i ka wā e hoʻohana ai i kēia lāʻau lapaʻau, ʻo ia ka hiki ke loaʻa nā hopena alerika koʻikoʻi, a i ʻole anaphylaxis. He pilikia hoʻoweliweli kēia i ke ola.
Ma muli o kēia pilikia, e kuhikuhi ana kāu kauka i kahi epinephrine auto-injector . He mea like ia me ka peni. E aʻo ʻia ʻoe a me kahi lālā o ka ʻohana i ke ʻano a me ka manawa e hoʻohana ai iā ia inā loaʻa kahi hopena allergies.
He mea nui e mālama i kēia me ʻoe i nā manawa a pau. E mālama i kēia kokoke iā ʻoe ma nā wahi a pau āu e hele ai, ʻoiai ʻoe ma ka home.
Eia kekahi, e mālama mau i ke Kāleka ʻEke kālā a ka Mea Maʻi i hāʻawi ʻia me ʻoe a hōʻike i kēlā me kēia kauka a me ke kahu maʻi e mālama iā ʻoe.
He aha nā hopena ʻaoʻao e hiki mai ana?
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke loaʻa kekahi mau hopena ʻaoʻao. He wikiwiki kekahi, aʻo kekahi he mea maʻamau. E wehewehe kākou iā lākou.
| Ka hopena ʻaoʻao/hōʻailona | 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 koʻikoʻi a i ʻole Angioedema | ʻŌhūhū ʻili, hives, maneʻo, pehu o ka maka, nā maka, nā lehelehe, ke alelo, nā lima a i ʻole nā wāwae, paʻakikī ke ale, paʻakikī ka hanu ʻana. Inā loaʻa kekahi o kēia mau mea, e hoʻomaopopo koke i kāu kauka a hele i ka haukapila kokoke loa ʻo ETU. |
| Nā hopena hoʻokomo | ʻEha ka umauma, paʻakikī ka hanu ʻana, pōkole ka hanu, maule, manaʻo poniuniu. E ʻimi koke i ke kōkua lapaʻau. |
| Nā hopena ʻaoʻao ʻaʻole ia he mea weliweli, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| Nā pilikia o ka ʻōnaehana hoʻoheheʻe | Ka maʻi kahe, ʻeha ʻōpū, luaʻi. |
| Nā maʻi maʻamau ʻē aʻe | Pōʻino, ʻeha poʻo, ʻeha hui. |
| ʻO ka ʻoluʻolu ʻole ma kahi i hoʻokomo ʻia | ʻEha, ʻulaʻula, a pehu paha ma kahi i inikini ʻia. |
ʻAʻole i loko o kēia papa inoa nā hopena ʻaoʻao āpau. Eia kekahi, inā loaʻa iā ʻoe kekahi mea ʻē, e kamaʻilio me kāu kauka e pili ana i ia mea.
He aha inā lawe nui wau i ka lāʻau lapaʻau a hala paha kahi ʻai?
Ka nui o ka lāʻau
E noʻonoʻo inā manaʻo ʻoe ua lawe ʻoe i kahi overdose o kēia lāʻau lapaʻau, ʻelua mau mea āu e hana koke ai.
1. E hele i ka Emergency Treatment Unit (ETU) o ka haukapila kokoke loa.
2. Kāhea aku i ke Kikowaena ʻIke Lāʻau Make Lahui ma ka Halemai Lahui ʻo Colombo.
Inā ʻoe e poina i kahi mahele o ka lāʻau lapaʻau (Missed Dose)
Mai hopohopo. Mai lawe i kahi mahele lāʻau pālua e hoʻopiha ai i kahi mahele lāʻau i hala ʻole. Hiki i kēlā ke lilo i mea weliweli. ʻO kāu wale nō e hana ai, ʻo ka poina ʻana i ka mahele lāʻau i hala ʻole a lawe i ka mahele lāʻau aʻe i ka manawa i hoʻonohonoho ʻia.
Pehea e mālama pono ai i ka lāʻau lapaʻau?
No ka mālama ʻana i ka maikaʻi o ka lāʻau lapaʻau, he mea nui loa ia e mālama pono.
- ʻO ke ʻano hana maikaʻi loa: ʻOi aku ka maikaʻi o ka mālama ʻana i loko o ka pahu hau. Akā, mai hoʻokomo i loko o ka pahu hau. ʻO ia hoʻi, mai hoʻopaʻahau.
- Mahana o ka lumi: Inā pono, hiki ke mālama ʻia ma ka mahana o ka lumi a hiki i 25 kekelē Celsius (77 kekelē Fahrenheit) a hiki i 30 mau lā. Eia nō naʻe, inā hana ʻoe pēlā, pono e hoʻolei ʻia nā koena ma hope o 30 mau lā. ʻAʻole ʻōlelo ʻia e hoʻihoʻi i loko o ka pahu hau.
- Nā mea ʻē aʻe: E mālama mau i ka lāʻau lapaʻau i loko o kāna pahu kumu. E pale mai ka mālamalama. E mālama ʻia mai ka hiki ʻana aku o nā keiki a me nā holoholona. E hoʻolei i ka lāʻau lapaʻau i pau ka manawa.
Leka Lawe-Home
- He inikini kūikawā ʻo Pegvaliase i hāʻawi ʻia e kāohi i ka pae o ka phenylalanine i loko o ke koko o ka poʻe me PKU.
- ʻO ka pilikia nui loa i ka wā e hoʻohana ai i kēia lāʻau lapaʻau, ʻo ia ka hopena aleri koʻikoʻi. No laila , e lawe mau i ka epinephrine auto-injector a kāu kauka i hāʻawi ai iā ʻoe.
- Ma mua o kou hoʻomaka ʻana e lawe i ka lāʻau lapaʻau, e haʻi i kāu kauka e pili ana i kou mau maʻi āpau, nā maʻi allergies, a me nā lāʻau lapaʻau ʻē aʻe āu e lawe nei.
- E hahai pono i nā kuhikuhi no ka hoʻohana ʻana i ka lāʻau lapaʻau a pehea e wehe ai i nā nila.
- Inā loaʻa iā ʻoe kekahi mau hōʻailona ʻē, ʻoiai ka paʻakikī o ka hanu ʻana, ka pehu ʻana, a i ʻole ka ʻeha o ka umauma, e ʻimi koke i ke kōkua lapaʻau.
- Inā he mau nīnau a kānalua paha kāu e pili ana i kēia lāʻau lapaʻau, mai makaʻu e kamaʻilio me kāu kauka e pili ana i ia mea.
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