Ke haʻi aku kāu kauka iā ʻoe a i ʻole kāu mea aloha he cystic fibrosis (CF) ko lākou, nui paha kāu mau nīnau e pili ana i ka lāʻau lapaʻau a lākou e kuhikuhi ai. ʻOiai he ʻano paʻakikī ia, he mea nui e hoʻomaopopo piha ʻia e pili ana i ka lāʻau lapaʻau a lākou e kuhikuhi ai. I kēia lā e kamaʻilio mākou e pili ana i kekahi lāʻau lapaʻau kikoʻī. He pila hui ia i kapa ʻia ʻo ORKAMBI, ʻo ia ka hui pū ʻana o ʻelua mau lāʻau i kapa ʻia ʻo Lumacaftor lāua ʻo Ivacaftor.
He aha ke ʻano o kēia lāʻau lapaʻau? He aha ka hana a kēia?
I ka ʻōlelo maʻalahi, ʻo ka cystic fibrosis (CF) kahi maʻi i hoʻokumu ʻia e kahi kīnā i loko o kahi protein i loko o ko mākou kino. ʻO kēia ke kumu o nā mea huna i loko o ko mākou mau māmā a me nā ʻōpū, ʻoiai ka mucus, e lilo i mea mānoanoa a pipili. E noʻonoʻo e pili ana i ia mea, ʻo ka maʻamau ka mucus i loko o ko mākou mau māmā he wai iki, no laila e puka maʻalahi ia. Akā ʻo ka mucus i loko o ke kanaka me CF he mānoanoa maoli ia, e like me ke kāpili. Hoʻopaʻa ʻia kēia mucus mānoanoa i loko o nā māmā, e hoʻoulu ai i ka paʻakikī o ka hanu ʻana, ka ʻū ʻana, a me nā maʻi pinepine.
ʻO Lumacaftor; Hana kēia lāʻau i kapa ʻia ʻo Ivacaftor ma ka hele ʻana i kēlā protein hewa aʻu i ʻōlelo ai a hoʻoponopono iā ia i kekahi ʻano. Ua like ia me ka hoʻoponopono ʻana i kahi puka haki. Ke hoʻomaka kēia protein e hana pono, ua kaulike ke ʻano o ka neʻe ʻana o ka paʻakai a me ka wai ma o nā ʻāpana o ke kino. A laila lilo kēlā mucus mānoanoa a pipili i mea lahilahi a hoʻomaka e maʻalahi ke wehe ʻia mai nā māmā. Hiki i kēia ke kāohi i nā hōʻailona he nui o CF.
Akā, hoʻokahi mea e hoʻomanaʻo ai , ʻaʻole kēia he lāʻau lapaʻau no ka cystic fibrosis (CF). He lāʻau lapaʻau wale nō ia e kōkua ai i ka kaohi ʻana i nā hōʻailona a hoʻomaʻalahi i ke ola.
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, he mea nui loa ia e hoʻomaopopo i kāu kauka e pili ana i kou mōʻaukala olakino piha. No ka mea, pono kekahi mau kūlana i ka mālama kūikawā i ka wā e hoʻohana ai i kēia lāʻau lapaʻau. Inā loaʻa iā ʻoe kekahi o kēia mau kūlana, e hōʻoia e haʻi i kāu kauka.
| Kūlana olakino a i ʻole ka manawa kūpono | No ke aha ʻoe e pono ai e haʻi aku i ke kauka? |
|---|---|
| Maʻi akepaʻa | Hiki i kēia lāʻau lapaʻau ke hoʻopilikia i ke akepaʻa. Inā loaʻa iā ʻoe nā pilikia akepaʻa, pono paha e hoʻoponopono ʻia kāu mahele lāʻau a i ʻole pono paha ʻoe e nānā pinepine ʻia. |
| Maʻi puʻupaʻa | He mea pono nō hoʻi e hopohopo e pili ana i ka hana o ka puʻupaʻa. |
| Ke koko kiʻekiʻe | Hiki i ka lāʻau lapaʻau ke hoʻonui hou aʻe i ke koko, no laila he mea nui e ʻike i kēlā. |
| Inā hāpai ʻoe a i ʻole e hoʻāʻo nei e hāpai | Pono ʻoe e kamaʻilio me kāu kauka e pili ana i ka palekana o kēia lāʻau lapaʻau i ka wā hāpai. |
| Inā hānai ʻia ka pēpē me ka waiū | E kūkākūkā me kāu kauka inā paha e hele ka lāʻau lapaʻau i ka pēpē ma o ka waiū umauma a me kona hopena. |
| Nā maʻi ʻaleka i nā lāʻau lapaʻau ʻē aʻe, nā meaʻai, a i ʻole nā mea hoʻoluʻu | He mea nui kēia ʻike e ʻike inā he maʻi ʻoe i kēia lāʻau lapaʻau a i ʻole kekahi o kāna mau mea hoʻohui. |
Pehea ʻoe e hoʻohana ai i kēia lāʻau lapaʻau?
ʻO kēia ka ʻāpana koʻikoʻi loa. Inā ʻaʻole ʻoe e hoʻohana pono i kēia lāʻau lapaʻau, e emi paha nā hopena.
- E lawe pū me ka ʻai momona: ʻO kēia ke kānāwai koʻikoʻi loa . I mea e komo pono ai kēia lāʻau lapaʻau e ke kino, pono e lawe pū me ka ʻai momona. No ka laʻana, e lawe pū me kahi mea e like me nā hua manu, ka pata, ka tīhi, nā pīnati, ka avocado. Inā hāʻawi ʻia i kahi keiki liʻiliʻi, hiki iā ʻoe ke hāʻawi pū me ka waiū umauma, ka waiū pauka a i ʻole nā hua waiū momona piha e like me ka yogurt, ka tīhi.
- E lawe pono e like me ke kauoha a kāu kauka: e lawe i ka nui kūpono, i ka manawa kūpono. E hoʻomau i ka hoʻohana ʻana a hiki i ka wā e ʻōlelo ai kāu kauka e hoʻōki.
- Mai lawe pū me ka wai huaʻai: E pale i ka inu ʻana i ka wai huaʻai a i ʻole ka wai huaʻai i ka wā e lawe ana i kēia lāʻau.
- Ke hāʻawi ʻia i nā keiki: Hiki ke kuhikuhi ʻia kēia lāʻau lapaʻau i nā keiki ma luna o 6 mau makahiki. Eia nō naʻe, e hāʻawi kāu kauka iā ʻoe i nā ʻōlelo kūikawā e pili ana i kēia.
He aha inā lawe nui wau i ka lāʻau lapaʻau?
Inā manaʻo ʻoe ua lawe ʻoe i ka lāʻau lapaʻau ma mua o ka nui i kuhikuhi ʻia, 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 poina iaʻu kahi lāʻau?
Inā poina iā ʻoe ke lawe i kahi lāʻau, e lawe koke iā ia i kou hoʻomanaʻo ʻana. Eia nō naʻe, inā ʻaʻole i hala ma mua o 6 mau hola a hiki i kāu lāʻau aʻe, mai lawe i ka lāʻau i poina. E hōʻalo iā ia a lawe i ka lāʻau aʻe i ka manawa i hoʻonohonoho ʻia. Mai lawe i ʻelua mau lāʻau i ka manawa hoʻokahi.
Nā lāʻau lapaʻau ʻē aʻe e launa pū me kēia lāʻau lapaʻau
He mea kēia e makaʻala nui ai. Hiki iā ORKAMBI ke launa pū me nā lāʻau lapaʻau ʻē aʻe he nui. ʻO ke ʻano kēia, ʻo ka lawe ʻana me nā lāʻau lapaʻau ʻē aʻe hiki ke hoʻololi i nā hopena o ORKAMBI, hoʻololi i nā hopena o nā lāʻau lapaʻau ʻē aʻe, a i ʻole ke kumu i nā hopena ʻaoʻao koʻikoʻi.
No laila, pono ʻoe e haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau āpau āu e lawe nei (nā lāʻau lapaʻau no nā maʻi ʻē aʻe, nā huaora, nā lāʻau lapaʻau lāʻau, nā lāʻau Ayurvedic, nā mea hoʻohui meaʻai).
Aia ma lalo iho nei kekahi mau lāʻau lapaʻau e hiki ke launa pū me kēia lāʻau lapaʻau. ʻAʻole i pau kēia papa inoa.
| Mai lawe pū i kēia lāʻau me kekahi lāʻau ʻē aʻe. | |
|---|---|
| ʻAtemetera, lumefantrine | Ranolazine |
| ʻO Lurasidone | ʻO kekahi mau lāʻau lapaʻau i hāʻawi ʻia no nā maʻi HIV a me Hepatitis C |
| E ʻoluʻolu e hoʻomaopopo i kāu kauka no ka mea hiki ke launa pū kēia me kāu lāʻau lapaʻau. | |
| Kekahi mau lāʻau antibiotic (e.g. Clarithromycin, Erythromycin) | Nā lāʻau antifungal (e.g. Fluconazole, Ketoconazole) |
| Nā lāʻau lapaʻau no ka maʻi epilepsy (e.g. Carbamazepine, Phenytoin) | Lāʻau lapaʻau no ke kaumaha a i ʻole ka hopohopo |
| Nā lāʻau hoʻopau i nā maʻi pale kino (e.g. Cyclosporine, Tacrolimus) | Nā ʻano steroid (e.g. Prednisone) |
| Nā lāʻau hoʻomalu hānau (nā hormones Estrogen/Progestin) | ʻO Warfarin (mea hoʻokahe koko) |
| Nā lāʻau hoʻopau ʻeha e like me ka ibuprofen | ʻO St. John's Wort (lāʻau lapaʻau) |
Nā mea ʻē aʻe e noʻonoʻo ai i ka wā e lawe ai i ka lāʻau lapaʻau
- Nā nānā lapaʻau maʻamau: E haʻi aku kāu kauka iā ʻoe e hele pinepine i ke keʻena lapaʻau. E hele i ka manawa kūpono a hana i nā mea e like me nā hoʻāʻo koko. Inā ʻaʻole e nalowale kāu mau hōʻailona, e haʻi iā lākou e pili ana i ia mea.
- E makaʻala i kou ʻike maka: He liʻiliʻi ka pilikia o kēia lāʻau lapaʻau i ka hoʻoulu ʻana i nā cataracts, ʻoi aku hoʻi i nā keiki. No laila, pono e nānā ʻia kou mau maka e ke kauka maka i nā manawa maʻamau i ka wā e lawe ana i ka lāʻau. Inā ʻike ʻoe i kekahi mau loli i kou ʻike maka, e haʻi koke i kāu kauka.
- E makaʻala me ka kaohi hānau: He mea nui loa kēia inā ʻoe e hoʻohana ana i nā lāʻau kaohi hānau hormonal. Hiki iā ORKAMBI ke hoʻemi i ka hopena o lākou. No laila, e kamaʻilio me kāu kauka e pili ana i ka hoʻohana ʻana i kahi ʻano kaohi hānau hou aʻe, e like me ka condom a i ʻole diaphragm .
Nā hopena ʻaoʻao e hiki mai ana ma muli o ka lāʻau lapaʻau
E like me nā lāʻau lapaʻau āpau, hiki i kēia ke hana i nā hopena ʻaoʻao i kekahi poʻe. He koʻikoʻi kekahi, he akahai kekahi.
| Nā hopena ʻaoʻao koʻikoʻi e pono e hōʻike koke ʻia i ke kauka | |
|---|---|
| Nā hopena alerika | ʻŌhūhū ʻili, maneʻo, pehu o ka maka, nā lehelehe, ke alelo a i ʻole ka puʻu. |
| Paʻakikī ka hanu ʻana a i ʻole ka ʻeha o ka umauma | Inā pilikia ʻoe i ka hanu ʻana a i ʻole ke manaʻo nei ʻoe e ʻū ana kou umauma. |
| Nā hōʻailona o ka hōʻino ʻana o ke akepaʻa | ʻEha ma ka ʻaoʻao ʻākau o luna o ka ʻōpū, nalowale ka makemake e ʻai, nausea, nā ʻōpala māmā, ka mimi melemele ʻeleʻele a ʻeleʻele paha, ka melemele o nā maka a i ʻole ka ʻili, a me ka luhi nui. |
| Hoʻonui ʻia ke koko | E nānā ke kauka i kēia. |
| Ka loli ʻana o ka ʻike maka | Inā he pōwehiwehi kou ʻike. |
| Nā hopena ʻaoʻao ʻaʻole pinepine e wikiwiki, akā pono e hōʻike ʻia i ke kauka inā hoʻomau lākou | |
| ʻeha ka ʻōpū | Kinoea |
| Ka maʻi pākī | Ka luaʻi |
| ʻEha poʻo | Luhi |
| Nā pōʻaiapuni menstrual kūpono ʻole i nā wahine | |
Pehea ʻoe e mālama ai a hoʻolei aku i ka lāʻau lapaʻau?
- Ka mālama ʻana: E mālama i nā papa mai ka hiki ʻana aku o nā keiki a me nā holoholona . E mālama ma ka mahana o ka lumi (ma waena o 20-25 kekelē Celsius). Mai hoʻohana i ka lāʻau lapaʻau i pau ka lā.
- Ka Hoʻolei ʻana: ʻO ke ala maikaʻi loa e hoʻolei aku ai i nā lāʻau lapaʻau i pau ka manawa a i ʻole nā lāʻau lapaʻau ʻaʻole pono hou ʻia, ʻo ia ke lawe ʻana i nā pila mai loko mai o ka pahu, e kāwili iā lākou me kahi mea e like me ke kope kope i hoʻohana ʻia, ka lepo, a i ʻole ka ʻōpala pōpoki, e waiho i loko o kahi ʻeke i hoʻopaʻa pono ʻia, a e hoʻolei iā lākou i loko o ka ʻōpala. Mai hoʻolei i nā lāʻau lapaʻau i loko o ka lua ke ʻole kāu kauka e ʻōlelo aku iā ʻoe.
Leka Lawe-Home
- E lawe mau i ka ORKAMBI (Lumacaftor; Ivacaftor) me ka meaʻai momona e like me ka pata, ka tīhi, a i ʻole nā hua manu.
- Nou wale nō kēia lāʻau lapaʻau. Mai kaʻana like me kekahi.
- E haʻi i kāu kauka e pili ana i nā lāʻau lapaʻau ʻē aʻe āu e lawe nei, nā huaora, a me nā lāʻau lapaʻau āu e lawe nei.
- E ʻimi koke i ke kōkua lapaʻau inā loaʻa iā ʻoe nā hopena koʻikoʻi e like me nā loli o ka ʻike, ka paʻakikī o ka hanu ʻana, a i ʻole ka ʻeha ma ka ʻaoʻao ʻākau o luna o kou ʻōpū.
- E mālama i kāu mau lā keʻena lapaʻau i hoʻonohonoho ʻia a me nā hoʻokolohua me kāu kauka.
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