Ke manaʻo nei ʻoe i kekahi manawa e ala ana ʻoe me ka manaʻo maikaʻi i ke kakahiaka, akā i ka hala ʻana o ka lā, manaʻo ʻoe ʻaʻohe ou ikaika? Me he mea lā ua nāwaliwali loa kou mau ʻiʻo a ʻaʻole hiki iā ʻoe ke hana i kekahi mea, ʻoiai ua kaumaha kou mau maka, a ua paʻakikī iā ʻoe ke ʻōlelo a i ʻole ke ale ʻana i ka meaʻai? Inā ua loaʻa iā ʻoe kēlā mau ʻike, he mea nui loa ia iā ʻoe e makaʻala i ka maʻi a mākou e kamaʻilio nei i kēia lā i kapa ʻia ʻo 'Myasthenia Gravis'. ʻOiai he mea maʻamau ʻole kēia, ke maopopo iā ʻoe ma ka maʻalahi, hiki iā ʻoe ke loaʻa nā pane i nā nīnau he nui.
I ka ʻōlelo maʻalahi, he aha ka Myasthenia Gravis?
ʻO ka Myasthenia gravis, a i ʻole MG no ka pōkole, he maʻi autoimmune . I ka ʻōlelo maʻalahi, ʻo ia ka wā e hoʻouka hewa ai ka ʻōnaehana pale ponoʻī o ko mākou kino, ʻo ia hoʻi ka ʻōnaehana pale, i nā ʻāpana o ko mākou kino ponoʻī. I ka MG, hoʻouka ka ʻōnaehana pale i nā pilina ma waena o ko mākou mau aʻalolo a me nā ʻiʻo.
ʻO kēia ke kumu o nā ʻiʻo e pili ana i ko kākou mau iwi a hoʻoneʻe mālie iā kākou e nāwaliwali. Hoʻopilikia nui kēia i:
- No nā ʻiʻo i kou mau maka, maka, ʻāʻī, lima, a me nā wāwae.
Hiki i kēia nāwaliwali ke hoʻolilo iā ʻoe i mea paʻakikī ke hana i nā mea e like me:
- E hoʻoneʻe i kou mau maka a puni, e ʻimo.
- E wehe mau i kou mau maka.
- E hōʻike i nā manaʻo like ʻole me kou helehelena.
- E nau i ka meaʻai, e ale, a e kamaʻilio.
- E hāpai i kou mau lima, e hāpai i kāu mau mea.
- E piʻi i luna o ke alapiʻi, e ala aʻe mai luna mai o ka noho.
ʻO ka hiʻohiʻona kūikawā a koʻikoʻi hoʻi o kēia maʻi, ʻo ia ka hoʻonui ʻia ʻana o kēia nāwaliwali o nā ʻiʻo ke hana ʻoe, akā hoʻi hou lākou i ke ola ma hope o kahi manawa pōkole o ka hoʻomaha.
He maʻi mau loa kēia. ʻO ia hoʻi, ʻaʻohe lāʻau lapaʻau hoʻokahi e kūpono i nā mea āpau. Akā, mai hopohopo, me nā lāʻau lapaʻau kūpono loa o kēia wā, hiki i kekahi ke hoʻokele i kā lākou mau hōʻailona a ola i kahi ola olakino.
Aia kekahi mau ʻano nui o ka myasthenia gravis?
ʻAe, aia kekahi mau ʻano nui o kēia maʻi. E nānā kākou i ke ʻano o lākou.
| ʻAno maʻi (ʻAno) | He wehewehe pōkole |
|---|---|
| ʻO ka Myasthenia Autoimmune | ʻO kēia ke ʻano maʻamau. Hoʻokumu ʻia ia e kekahi mau antibodies i hana ʻia e ka ʻōnaehana pale o ke kino. ʻAʻole maopopo ke kumu pololei. |
| ʻO ka Myasthenia hānau hou | He kūlana manawa pōkole i hoʻokumu ʻia e ka loaʻa ʻana o nā antibodies i ka pēpē mai kahi makuahine me MG i ka wā hāpai. I ka wā hānau, hiki i ka pēpē ke uē nāwaliwali a paʻakikī ke omo. Nalo kēia mau hōʻailona ma hope o ʻekolu mahina. |
| ʻO ka Myasthenia hānau | ʻAʻole kēia he maʻi autoimmune. He maʻi kakaikahi ia i hoʻokumu ʻia e kahi loli genetic. |
ʻO ke kūlana myasthenia gravis autoimmune maʻamau i māhele ʻia i ʻelua mau ʻano nui.
ʻO ka Myasthenia maka
He kūlana kēia kahi e nāwaliwali ai nā ʻiʻo e hoʻoneʻe ai i nā maka a me nā lihilihi maka. Hiki i kēia ke kumu i kou mau lihilihi maka e kūlou a paʻakikī paha ke wehe i kou mau maka. Hiki i kekahi poʻe ke ʻike i ka ʻike pālua. ʻO kēia nāwaliwali o ka maka ka hōʻailona mua o MG. Ma kahi o ka hapalua o ka poʻe me kēia kūlana e loaʻa i ka ʻike ākea.
ʻO ka Myasthenia Laulā
Ma kēia kūlana, me nā ʻiʻo o nā maka, nā ʻiʻo o ka maka, ka ʻāʻī, nā lima, nā wāwae, a me ka ʻāʻī e nāwaliwali pū kekahi. Hiki i kēia ke paʻakikī i ka ʻōlelo ʻana, ka moni ʻana i ka meaʻai, ke hāpai ʻana i kou mau lima ma luna o kou poʻo, ke ala aʻe mai kahi noho ʻana, ka hele wāwae ʻana i nā wahi lōʻihi, a me ke piʻi ʻana i nā alapiʻi.
Pehea lā e ulu ai kēia maʻi? He aha ka mea e hana ʻia ana i loko o ko kākou kino?
I mea e hoʻomaopopo ai i kēia, e lawe kākou i kahi laʻana liʻiliʻi. E noʻonoʻo i ka pilina ma waena o ko kākou mau aʻalolo a me nā ʻiʻo e like me ka pilina ma waena o kahi mea kiola a me kahi mea hopu i kahi pāʻani kriket.
1. ʻO ka mea kīloi (aʻalolo): ʻO ke aʻalolo ka mea e hoʻouna i ka leka i ka ʻiʻo e "ʻaelike".
2. Ka pōpō (Acetylcholine): Hoʻouna ʻia kēia leka ma o kahi kemika (neurotransmitter) i kapa ʻia ʻo 'acetylcholine'. ʻO kēia ko kākou 'pōpō'.
3. Ka mīkina lima o ka mea hoʻokani (nā mea loaʻa): Aia nā wahi kūikawā ma ka pālima e hopu ai i kēia 'pōpō'. Kāhea mākou iā lākou he 'nā mea loaʻa'. Ua like kēia me ka 'mīkina lima' o ka mea hoʻokani.
ʻO ka maʻamau, kūlike ka 'pōpō' (acetylcholine) i hoʻouna ʻia mai ke aʻalolo me ka 'mīkini lima' (mea loaʻa) i loko o ka ʻiʻo. ʻO ia ka manawa e loaʻa ai i ka ʻiʻo ka hōʻailona e ʻūlū. Hana koke kēia, me ka ʻole o ke keakea.
Eia nō naʻe, aia kekahi mea ʻokoʻa e hana ʻia ana i loko o ke kino o kekahi me ka myasthenia gravis.
Hana kā lākou ʻōnaehana pale i nā antibodies hewa a ālai a luku paha i nā mea loaʻa i loko o ka ʻiʻo. A laila, ʻoiai ke aʻalolo e hoʻouna i ka pōpō, ʻaʻohe mīkina lima e hopu ai. No laila, ʻaʻole loaʻa i ka ʻiʻo ka hōʻailona kūpono, no laila nāwaliwali ia. Ke hana nui ʻoe, lilo ka ʻiʻo i mea nāwaliwali loa no ka mea ʻaʻole hiki iā ia ke hopu i ka pōpō. Ke hoʻomaha ʻoe, hiki iā ʻoe ke hoʻohana hou i ka mīkina lima, no laila e ola hou ia. Maopopo iā ʻoe?
He aha nā hōʻailona nui o ka myasthenia gravis?
Hiki i nā hōʻailona o MG ke hoʻomaka koke. Hiki iā lākou ke loli i ka ikaika mai kēlā lā a kēia lā a mai kēlā manawa a i kēia manawa. Manaʻo ka nui o ka poʻe he ikaika i ka hoʻomaka ʻana o ka lā a nāwaliwali i ka hopena o ka lā.
| Hōʻailona | Wehewehena |
|---|---|
| Ka lihilihi ʻana o ka maka (Ptosis) | Nā lihilihi maka e kulou ana i kekahi a i ʻole nā maka ʻelua. ʻO kēia ka hōʻailona mua maʻamau. |
| ʻIke pōwehiwehi a pālua paha | ʻO ka nāwaliwali o nā ʻiʻo e hoʻoneʻe ai i nā maka hiki ke hana i ka ʻike pālua. |
| Ka paʻakikī i ka ʻōlelo ʻana, ka moni ʻana, a i ʻole ka nau ʻana | Hiki ke ʻike ʻia nā mea e like me ka loli o ka leo i ka wā e ʻōlelo ai, ka paʻakikī i ka moni ʻana, ka paʻa ʻana o ka meaʻai, a me ka paʻakikī i ka nau ʻana. |
| Ka nāwaliwali ma nā lima, nā wāwae, a me ka ʻāʻī | Luhi koke nā lima i ka hana ʻana i nā mea e like me ka hāpai ʻana, ka hoʻopili ʻana i ka lauoho, ka palaki ʻana i nā niho. Paʻakikī ke hele wāwae, paʻakikī ke paʻa pololei i ke poʻo. |
| Ka loli ʻana o ka helehelena | ʻO ka hōʻike ʻole ʻana i ke ʻano o ka helehelena e like me ka mea maʻamau i ka wā e ʻakaʻaka ana, hiki iā ʻoe ke hoʻohālike me he mea lā e "koi ana ʻoe i ka ʻakaʻaka." |
| Paʻakikī ka hanu ʻana | He kūlana weliweli loa kēia a he mea wikiwiki hoʻi. Inā loaʻa iā ʻoe ka pōkole o ka hanu ma muli o ka nāwaliwali o nā ʻiʻo hanu, pono ʻoe e hele koke i ka Emergency Department (ETU) o kahi haukapila. Ua kapa ʻia kēia he 'Myasthenic Crisis'. |
Pehea e ʻike pono ai ke kauka i kēia maʻi?
Inā loaʻa iā ʻoe kēia mau hōʻailona, e nīnau mua kāu kauka iā ʻoe e pili ana i kou mōʻaukala olakino a hana i kahi hoʻokolokolo kino. A laila e kauoha paha lākou i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona:
- Nā hoʻāʻo koko: E nānā ʻia kou koko no nā antibodies ʻano ʻē a mākou i kamaʻilio ai ma mua (ʻacetylcholine receptor antibodies a i ʻole MuSK antibodies). Ma kahi o 85% o ka poʻe me MG he mau antibodies kēia i loko o ko lākou koko.
- Nā scan kiʻi: Hiki ke hana ʻia kahi scan CT a MRI paha e nānā i kahi pilikia a i ʻole ka puʻupuʻu (thymoma) i loko o kāu gland thymus.
- Electromyography (EMG): He hoʻokolohua kūikawā kēia e nānā ana i nā mea ʻino i ke ala e hoʻoili ʻia ai nā hōʻailona uila ma waena o nā aʻalolo a me nā ʻiʻo.
Ma muli o nā hopena o kēia mau hoʻokolohua, e hoʻoholo kāu kauka i ke kahua o kou maʻi a hāʻawi i ka hoʻolālā lapaʻau kūpono loa nāu.
He aha nā lāʻau lapaʻau no kēia?
ʻO ka mea mua, he maʻi hiki ke mālama ʻia ʻo MG. ʻOiai ʻaʻohe lāʻau lapaʻau, nui nā lāʻau lapaʻau kūpono i loaʻa i kēia lā e hiki ke kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona a ola i kahi ola maʻamau a hana.
Aia kekahi mau ʻano lapaʻau:
- Nā lāʻau lapaʻau:
- Hoʻomaikaʻi nā lāʻau lapaʻau e like me nā 'cholinesterase inhibitors' i ka hoʻoili ʻana o nā hōʻailona ma waena o nā aʻalolo a me nā ʻiʻo, e hoʻonui ana i ka ikaika o nā ʻiʻo.
- ʻO nā immunosuppressants, e like me corticosteroids, e hōʻemi i ka hana ʻana o kēlā mau antibodies maʻamau.
- Nā antibodies monoclonal:He mau protein kūikawā kēia i hāʻawi ʻia ma o ka intravenous. Hoʻomalu lākou i ka hana o ka ʻōnaehana pale.
- Hoʻololi plasma (Plasmapheresis): Pili kēia i ka hoʻopili ʻana iā ʻoe i kahi mīkini kūikawā e wehe i ka ʻāpana plasma o kou koko i loaʻa nā antibodies ʻino a hoʻololi iā ia me ka plasma olakino a i ʻole kahi hopena.
- IV immunoglobulin (IVIG): He hoʻokomo ʻana o nā antibodies i loko o ke kino mai nā mea hāʻawi olakino. Kōkua kēia i ka hoʻopau ʻana i ka ʻōnaehana pale.
- ʻOki kino: No kekahi poʻe, ʻoi aku ka poʻe me ka puʻupuʻu thymus, wehe ʻia ke gland ma ke ʻoki kino (kahi 'thymectomy'). Hiki i kēia ke kāohi nui i nā hōʻailona.
E koho kāu kauka i ka lāʻau lapaʻau kūpono loa no kou kūlana.
He aha kā mākou e hana ai no mākou iho i ka wā e noho nei me nā hōʻailona?
ʻOiai e loaʻa ana ka lāʻau lapaʻau, ʻo ka hana ʻana i nā hoʻololi liʻiliʻi i kou nohona e hiki ai ke maʻalahi ka noho ʻana me kēia maʻi.
- Hoʻoikaika Kino: E nīnau i kāu kauka a e hana i nā hoʻoikaika kino māmā e kūpono iā ʻoe . E hoʻoikaika kēia i kou mau ʻiʻo, e hoʻomaha i kou noʻonoʻo, a hāʻawi iā ʻoe i ka ikehu.
- E pale i ka wela: Hiki i ka wela nui ke hoʻonui i nā hōʻailona. No laila e pale i ka hele ʻana i waho i ka lā wela i ke ao. Ke wela ʻoe, e kau i kahi lole i pulu ʻia i ka wai anuanu ma kou ʻāʻī a me kou lae.
- ʻIke maikaʻi: E ʻai i ka meaʻai kaulike i waiwai i ka protein a me nā kalapona e noho mau ai ka ikaika.
- E hoʻolālā i kāu hana: E hana i nā hana e pono ai ka hoʻoikaika nui loa i ka wā e loaʻa ai iā ʻoe ka ikaika nui loa, ʻo ia hoʻi i ke kakahiaka.
- He mea nui ka hoʻomaha: E hoʻomaha iki i ka lā. E hiamoe iki. E hoʻolohe i kou kino. Mai koi iā ʻoe iho e hana ke luhi ʻoe.
Leka Lawe-Home
- ʻO Myasthenia gravis (MG) kahi maʻi i hoʻokumu ʻia e kahi hana hewa i loko o kā mākou ʻōnaehana pale ponoʻī, akā hiki ke mālama pono ʻia .
- Inā ʻike ʻoe i nā hōʻailona e like me ke kuʻe ʻana o nā lihilihi maka, ka ʻike maka pohihihi, ka paʻakikī i ka ʻōlelo ʻana a i ʻole ka moni ʻana, a i ʻole ka luhi ʻē aʻe e hoʻonui ana i ka lā a pau, e ʻike koke i ke kauka.
- Inā pilikia ʻoe i ka hanu ʻana, e hele koke i ka ʻOihana Hoʻopilikia (ETU) o ka haukapila, no ka mea, he pilikia olakino paha ia (myasthenic crisis) .
- Me ka lāʻau kūpono, e hahai ana i nā ʻōlelo aʻoaʻo a kāu kauka, a me ka hana ʻana i nā hoʻololi maʻalahi o ke ʻano o ka nohona, hiki i ka hapa nui o ka poʻe me MG ke ola piha a hana . ʻAʻohe pono e makaʻu.
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