Ke manaʻo nei ʻoe ua mae koke kou ʻauwae a ua paʻakikī iā ʻoe ke nau i ka meaʻai i ka wā e ʻai ana? Akā ma hope o kekahi manawa, nalowale ka ʻeha a hiki iā ʻoe ke ʻai hou ma ke ʻano maʻamau? Inā ua loaʻa iā ʻoe kēia ʻike, a laila he mea nui loa kēia kumuhana a mākou e kūkākūkā nei i kēia lā iā ʻoe. He ʻano kēia i kapa ʻia ʻo Myasthenia Gravis .
He aha ka Myasthenia Gravis?
I ka ʻōlelo maʻalahi, ʻo ka myasthenia gravis kahi maʻi mau loa kahi e luhi ai nā ʻiʻo o ko mākou kino a nāwaliwali koke. ʻO ka hiʻohiʻona ʻokoʻa loa o kēia, ʻo ia ka nāwaliwali o nā ʻiʻo ke hoʻohana ʻia, a laila hoʻoikaika hou ma hope o ka hoʻomaha. Ua like ia me kahi pila e make ana ke hana ʻoe, akā hoʻouka hou ʻia ke waiho ʻoe no kekahi manawa.
Hiki i kēia kūlana ke hoʻopilikia i nā hui ʻiʻo like ʻole o ke kino. Ke hana ia, kapa mākou iā ia he 'generalized myasthenia gravis'. Hiki i kēia ke hoʻopilikia i ka nau ʻana i ka meaʻai, ka moni ʻana, ka minoʻaka ʻana, ka hāpai ʻana i nā poʻohiwi, ka hāpai ʻana i ka lima, ka paʻa ʻana i kahi mea, ke kū ʻana i luna, a me ka piʻi ʻana i nā alapiʻi.
He mea nui loa: I kekahi manawa hiki i kēia kūlana ke hoʻopilikia i nā ʻiʻo e pono ai ke hanu. He pilikia weliweli loa kēia a hoʻoweliweli i ke ola. Kāhea mākou i kēia he pilikia myasthenic. I kēlā hihia, pono ʻoe e hoʻokomo koke ʻia i ka Emergency Treatment Unit (ETU) o ka haukapila.
ʻOiai hiki i kēia maʻi ke hoʻopilikia i kekahi, ʻoi aku ka maʻamau i nā wahine ma waena o 20 a me 40 mau makahiki a me nā kāne ma waena o 50 a me 70 mau makahiki. Inā hānau kahi makuahine me kēia maʻi i kahi keiki, hiki i kekahi o nā protein (antibodies) i loko o ke koko o ka makuahine ke hele i ke keiki, e hoʻonāwaliwali ai i nā ʻiʻo no ka manawa pōkole. Akā, ʻaʻohe mea e hopohopo ai, ma ke ʻano maʻamau i loko o kekahi mau pule e hoʻopau ke kino o ke keiki i kēia mau mea a e hoʻi nā ʻiʻo o ke keiki i ka maʻamau.
He aha nā hōʻailona maʻamau o kēia maʻi?
No nā kānaka he nui, hoʻomaka ka maʻi ma nā maka. No laila, ʻo nā hōʻailona mua paha he mau lihilihi maka e kūlou ana, ka ʻike maka pōwehiwehi, a i ʻole ka ʻike maka pālua. I loko o hoʻokahi a ʻelua paha makahiki, hiki i kēia nāwaliwali ke laha i nā ʻiʻo ʻē aʻe o ke kino.
E wehewehe hou aku kākou i kēia mau hōʻailona ma ka papa ma lalo nei.
| Hōʻailona | He aha ka mea e hana nei me kēia? (He aha ka mea e hana nei?) |
|---|---|
| Ka nāwaliwali o nā ʻiʻo maka | Nā lihilihi maka e kulou ana, ka ʻike pālua, a i ʻole ka ʻike pōwehiwehi i kekahi a i ʻole nā maka ʻelua. |
| Ka loli ʻana o ka helehelena | Ka paʻakikī ke kāohi ʻana i nā ʻiʻo maka i ka wā e hana ai i nā mea e like me ka minoʻaka a i ʻole ka hana ʻana i nā helehelena. |
| Paʻakikī i ka ʻōlelo ʻana | Loli ka leo. Ma hope o ke kamaʻilio ʻana no kekahi manawa, lilo mālie ka leo i pahee a ihu. |
| Paʻakikī ke ale ʻana | Paʻakikī i ke ale ʻana i ka meaʻai, ka mea inu, a me ka lawai. I kekahi manawa, hiki i nā mea āu e ʻai ai a inu paha ke puka mai i waho o kou ihu. |
| Paʻakikī ka hanu ʻana | He pilikia kēia! (Myasthenic Crisis). He paʻakikī ke hanu ma muli o ka nāwaliwali o nā ʻiʻo o ka umauma. |
| Ka nāwaliwali o nā lālā a me ka ʻāʻī | Paʻakikī i ka mālama ʻana i ka ʻāʻī pololei, paʻakikī i ka hele wāwae, hiki ʻole ke hāpai i ka lima, a i ʻole e hāpai i kahi kaumaha. |
No ke aha lā kēia e hana nei? He aha ke kumu?
I mea e hoʻomaopopo ai i kēia, pono mua kākou e ʻike iki e pili ana i ke ʻano o ka hana ʻana o ko kākou mau aʻalolo a me nā ʻiʻo. E noʻonoʻo i ka wā e makemake ai ʻoe e hāpai i kou lima, hele mai kahi leka mai kou lolo ma o nā aʻalolo. Hiki kēia leka i ka ʻiʻo ma kahi hui liʻiliʻi ma waena o nā hopena aʻalolo a me ka ʻiʻo. ʻO ka ʻelele kemika e lawe ana i kēia leka ua kapa ʻia ʻo acetylcholine . Ke hoʻopaʻa kēia kemika, acetylcholine, i nā mea loaʻa i loko o ka ʻiʻo, ʻaelike ka ʻiʻo, ʻo ia hoʻi, hana ia.
ʻO ka Myasthenia gravis kahi maʻi autoimmune.ʻO ia hoʻi, hana hewa ka ʻōnaehana pale e pale ana i ko mākou kino a hoʻouka i nā ʻāpana olakino o ko mākou kino ponoʻī. ʻO ka mea e hana ʻia ana i kēia maʻi, ʻo ia ka pale ʻana a luku ʻana paha o nā antibodies i hana ʻia e ka ʻōnaehana pale i nā mea loaʻa acetylcholine aʻu i ʻōlelo ai ma mua. A laila ʻaʻole hiki pono ka leka e hele mai ana mai nā aʻalolo i nā ʻiʻo. ʻO ia ke kumu e nāwaliwali ai nā ʻiʻo.
ʻAʻole ʻike ʻia ke kumu kikoʻī e hana ai ka ʻōnaehana pale i kēia. Akā i kekahi manawa ua manaʻo ʻia he pili ia i ka thymus gland, aia ma ka umauma o luna. Kōkua kēia gland i ka hana ʻana i nā antibodies. Ma kahi o 15% o ka poʻe me ka myasthenia gravis he puʻupuʻu (thymoma) i loko o kēia gland. ʻOiai ʻaʻole kēia mau puʻupuʻu he maʻi kanesa, hiki i ka wehe ʻana i ka gland (thymectomy) ke kōkua i ka hōʻemi ʻana i nā hōʻailona i kekahi mau maʻi.
Pehea e ʻike ai ke kauka i kēia maʻi?
Inā loaʻa iā ʻoe kēia mau hōʻailona, pono ʻoe e ʻike mua i ke kauka. E nānā ʻo ia iā ʻoe e pili ana i kou ʻōnaehana nerve. A laila, hiki iā lākou ke paipai i kekahi mau hoʻokolohua e ʻike i ke kūlana.
- Hoʻāʻo koko: Hana ʻia kēia hoʻāʻo e ʻike inā loaʻa i loko o kou koko nā antibodies kikoʻī e hoʻouka ana i nā mea loaʻa acetylcholine aʻu i ʻōlelo ai.
- Hoʻāʻo ʻeke hau: Inā hāʻule kou lihilihi maka, e kau ʻia kahi ʻeke hau ma luna no ʻelua mau minuke. Hana ʻia kēia e ʻike inā hōʻemi ke anu i ka nāwaliwali o nā ʻiʻo no kekahi manawa.
- Nā hoʻāʻo hoʻoulu ʻana i nā aʻalolo: Hoʻokomo ʻia nā electrodes ma ka ʻili a hoʻouna ʻia nā hōʻailona uila liʻiliʻi e ana i ka wikiwiki a me ka pono o nā leka mai nā aʻalolo a i nā ʻiʻo.
- Hoʻāʻo EMG (Single-fiber electromyography): Hoʻokomo ʻia kahi electrode e like me ke nila maikaʻi loa ma o ka ʻili i loko o kahi ʻiʻo a nānā ʻia ka hana uila ma waena o ka lolo a me ka ʻiʻo.
- Nā kiʻi kiʻi: E noi ʻia paha ʻoe e hana i kahi CT scan a i ʻole MRI scan e nānā i kahi puʻupuʻu thymus (thymoma).
- Nā hoʻāʻo hana o ka puʻuwai: Hana ʻia kēia mau hoʻāʻo e ʻike ai inā ua hoʻopilikia ka maʻi i ka hana o nā puʻuwai.
Nā lāʻau lapaʻau a me nā mea hiki iā ʻoe ke hana ma ka home
ʻO ka lāʻau no kēia maʻi e pili ana i kou mau makahiki, ke koʻikoʻi o kou mau hōʻailona, a me ka wikiwiki o ka laha ʻana o ka maʻi.
Nā lāʻau lapaʻau
Hiki i kāu kauka ke ʻōlelo i nā lāʻau lapaʻau e like me:
- Nā mea hoʻopaʻa Cholinesterase: Hoʻomaikaʻi kēia mau lāʻau lapaʻau i ka kamaʻilio ma waena o nā aʻalolo a me nā ʻiʻo, kahi e kōkua ai i ka hoʻoikaika ʻana i nā ʻiʻo.
- Corticosteroids: Hoʻomalu kēia i ka hana o ka ʻōnaehana pale a hōʻemi i ka hana ʻana o nā antibodies ʻino.
- Nā Immunosuppressants: Hāʻawi ʻia kēia mau lāʻau lapaʻau e hōʻemi hou aku i ka pane a ka ʻōnaehana pale.
Nā Lapaʻau Kūikawā
I nā hihia o ka ʻino koke ʻana o nā hōʻailona a i ʻole ma mua o ke ʻoki ʻana, hiki i kāu kauka ke ʻōlelo i ka lāʻau lapaʻau intravenous (IV).
- Plasmapheresis: Pili kēia i ka hoʻouna ʻana i kou koko ma o kahi mīkini e kānana i nā antibodies ʻino. ʻOiai he wikiwiki nā hopena, he manawa pōkole wale nō ia.
- ʻO ka immunoglobulin intravenous (IVIg): ʻO kēia lāʻau lapaʻau e pili ana i ka hoʻokomo ʻana i nā antibodies olakino i loko o kou koko. Hoʻololi kēia i ke ʻano o ka hana a kāu ʻōnaehana pale a kaohi i kāu mau hōʻailona.
ʻO ke ʻoki kino - Thymectomy
Inā loaʻa ka maʻi i kahi puʻupuʻu ma ka thymus gland, e wehe loa ʻia ke gland ma ke ʻoki ʻana. ʻOiai inā ʻaʻohe puʻupuʻu, e hoʻomaikaʻi ʻia nā hōʻailona o kekahi mau maʻi ke wehe ʻia ka thymus gland.
Nā loli o ke ʻano o ka nohona
Ma waho aʻe o ka lāʻau lapaʻau, hiki i ka hana ʻana i nā hoʻololi liʻiliʻi i kou nohona ke kōkua i ka kaohi ʻana i nā hōʻailona.
- E mālama i ka ikehu i ka wā e ʻai ana: Inā pilikia ʻoe i ka nau ʻana i ka meaʻai, e ʻai i ka manawa o ka lā i loaʻa ai iā ʻoe ka ikaika nui loa. Ma kahi o ka ʻai ʻana i nā meaʻai nui, e ʻai i kekahi mau meaʻai liʻiliʻi i ka lā holoʻokoʻa. E koho i nā meaʻai palalulu.
- E hoʻohana i nā lako palekana: E hoʻokomo i nā kaola hopu kokoke i ka lua a me ka moena, a pēlā aku. Wehe i nā moena a me nā mea ʻē aʻe mai ka papahele e hōʻemi i ka manawa kūpono o ka paheʻe a me ka hāʻule ʻana.
- E kiʻi i ke kōkua mai nā mīkini: E mālama i kou ikehu ma ka hoʻohana ʻana i nā mīkini uila (palaki niho uila, mea wehe kini) ma kahi o nā hana lima.
- E hoʻohana i kahi pale maka: Hiki i kēia ke kōkua me ka ʻike pālua. I ka nānā ʻana i ke TV a i ʻole ka heluhelu ʻana, e pani i kekahi maka a hoʻohana i nā maka ʻelua ma ke ʻano ʻokoʻa.
- E hoʻolālā i kou lā: E hoʻohana pono i kou ikehu. E ʻimi i ka manawa o ka lā āu e ikaika loa ai a hana i nā hana hale a me nā hana waho.
Leka Lawe-Home
- He maʻi ka Myasthenia Gravis i hoʻokumu ʻia e ka ʻōnaehana pale ponoʻī o ke kino e hoʻonāwaliwali ai i nā ʻiʻo. E emi ana ka nāwaliwali ma hope o ka hoʻomaha ʻana.
- ʻOiai hoʻomaka pinepine nā hōʻailona ma nā maka (ʻike maka pōwehiwehi, ʻike maka pālua), hiki ke hoʻopilikia ʻia kekahi ʻiʻo o ke kino.
- ʻO ka paʻakikī o ka hanu ʻana (myasthenic crisis) he pilikia olakino e pono ai ka mālama koke ʻana. I kēlā hihia, e hele koke i ka Emergency Treatment Unit (ETU) o ka haukapila.
- He kūlana kēia e hiki ke hoʻomalu maikaʻi ʻia me ka mālama lapaʻau kūpono a me nā hoʻololi ʻana i ke ʻano o ka nohona. Mai makaʻu, e kamaʻilio me kāu kauka a loaʻa i ka lāʻau lapaʻau e pono ai.
- Hiki iā ʻoe ke maʻalahi i ka noho ʻana me nā hōʻailona ma ka hoʻolālā ʻana i kāu mau hana o kēlā me kēia lā a me ka mālama ʻana i ka ikehu.
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