Ke manaʻo nei hoʻi ʻoe e emi mālie ana ka ikaika o kou lima a me kou wāwae ma hope o ka piha ʻana i 50? Malia paha he mea paʻakikī ke paʻa pono i ke kīʻaha, e pihi i kahi pālule, a i ʻole ke hele wāwae nei ʻoe i ka wā e hele ana? ʻOiai ke manaʻo pinepine nei mākou i kēia mau mea he ʻelemakule maʻamau, i kekahi manawa aia paha kahi kūlana i kapa ʻia ʻo Inclusion Body Myositis (IBM) ma hope o kēia. I kēia lā, e kamaʻilio mākou e pili ana i kēia me ka maʻalahi, ma ke ʻano hiki iā ʻoe ke hoʻomaopopo.
I ka ʻōlelo maʻalahi, he aha ka Inclusion Body Myositis (IBM)?
ʻO ka Inclusion Body Myositis (IBM) kahi maʻi e hoʻonāwaliwali mālie ai i kou mau ʻiʻo . ʻO ka mea nui loa, ʻaʻole ia he ʻeha. ʻO ka hapa nui o ka manawa, hoʻomaka nā hōʻailona ma hope o 50 mau makahiki. E noʻonoʻo e like me ka pila i loko o ke kelepona paʻalima e kahe mālie ana, e nalowale mālie ana ka ikaika.
Holo mālie kēia maʻi i nā makahiki he nui. ʻAʻole ia he maʻi hoʻoweliweli i ke ola, ʻo ia hoʻi, ʻaʻole ia e pepehi iā ʻoe. Eia nō naʻe, i ka hala ʻana o ka manawa, hiki iā ia ke paʻakikī i ka hana ʻana i nā hana o kēlā me kēia lā. I kekahi manawa, hiki ke hoʻopilikia ʻia kekahi ʻaoʻao o ke kino ma mua o kekahi. Ma kahi o ka hapalua o ka poʻe me kēia maʻi e paʻakikī paha ke ale i ka hala ʻana o ka manawa .
ʻOiai ʻaʻohe lāʻau lapaʻau kūikawā no kēia, hiki i ka hoʻokele kino ke kōkua iā ʻoe e mālama i kou ikaika ʻiʻo no ka lōʻihi.
He aha nā hōʻailona nui o kēia maʻi?
ʻAʻole hiki koke mai ka nāwaliwali o nā ʻiʻo ma IBM. Hiki mālie loa ia, i ka hala ʻana o ka manawa. Hiki i kekahi poʻe ke ʻike mua iā ia ma ko lākou mau wāwae. Hiki i kekahi poʻe ke ʻike iā ia ma ko lākou mau lima, nā pulima lima, a i ʻole nā manamana lima. Hoʻomaka kekahi poʻe e ʻike he paʻakikī ke hana i nā hana koʻikoʻi e like me ke pihi ʻana i kahi pālule a i ʻole ke kākau ʻana me ka peni. Hoʻomaka kekahi e hāʻule pinepine i ka wā e hele ana.
I ka holomua ʻana o ka maʻi, hiki iā ʻoe ke ʻike i nā mea e like me kēia. E nānā kākou i kēia ma kahi papa e hoʻomaopopo pono ai.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Ka nāwaliwali ma nā lima, nā wāwae, nā poʻohiwi, a me nā pūhaka | Lilo i mea paʻakikī ke ala aʻe mai kahi noho, piʻi i nā alapiʻi, a hāpai paha i nā mea kaumaha. Hāʻule nā mea āu e ʻohi ai i ka papahele. |
| Ka paʻakikī i ka ale ʻana a me ka nāwaliwali o ka ʻāʻī | Me he mea lā ua paʻa ka meaʻai i ka moni ʻana. He paʻakikī ke hoʻopololei i kou poʻo, me he mea lā ua kūlou kou poʻo i mua. |
| ʻAtrophy ʻiʻo | Liʻiliʻi nā ʻiʻo nāwaliwali. ʻO ke ʻano kēia, me he mea lā e mae ana nā ʻiʻo o nā lima a me nā wāwae. |
| ʻEha iki (Myalgia) | ʻOiai ʻaʻohe ʻeha nui, hiki i kekahi poʻe ke ʻeha iki i nā ʻiʻo a lākou e ʻike mau ai. |
No ke aha e loaʻa ai kēia ʻano maʻi? He aha ke kumu?
ʻO kaʻoiaʻiʻo, ʻaʻole i loaʻa i nā kauka kahi kumu kikoʻī no IBM. Kāhea mākou i kēlā mau maʻi he "idiopathic".
Akā ua ʻike ʻia kekahi mau mea i ka noiʻi ʻana ma kēia:
- ʻO ka mumū: E like me nā ʻano myositis ʻē aʻe, pili pū kēia i ka mumū lōʻihi, a i ʻole ka mumū, o nā ʻiʻo. ʻO kēia ke kumu e nāwaliwali ai nā ʻiʻo. Akā, ʻaʻole i ʻike ʻia ke kumu o kēia mumū. Ua manaʻo ʻia he maʻi autoimmune paha ia, kahi e hoʻouka ai kā mākou ʻōnaehana pale ponoʻī i ko mākou kino ponoʻī.
- Nā Kino Hoʻokomo: Maanei i loaʻa ai ka inoa o ka maʻi. Hoʻokumu ʻia nā puʻupuʻu protein maʻamau ʻole i kapa ʻia ʻo "nā kino hoʻokomo" i loko o nā ʻiʻo. Ua like ia me nā ʻōpala pono ʻole e hōʻiliʻili ana i loko o kā mākou mau ʻāpana. Ua manaʻoʻiʻo ʻia ua hoʻopilikia kēia mau puʻupuʻu protein i ka hana maʻamau o nā ʻāpana.
Pehea e ʻike ai ke kauka i kēia?
Ke kamaʻilio ʻoe e pili ana i nā hōʻailona e like me kēia, ʻo ka mea mua a kāu kauka e hana ai, ʻo ia ke nīnau iā ʻoe i kahi nīnau maikaʻi a nānā i kou mau ʻiʻo, no ka mea, aia kekahi mau maʻi ʻē aʻe i loaʻa nā hōʻailona like me IBM, e like me ka polymyositis a me ka myasthenia gravis.
No laila, nānā pono ke kauka i nā mea e like me:
- ʻO wai nā ʻiʻo i nāwaliwali?
- Ua ʻoi aku ka pilikia o kekahi ʻaoʻao o ke kino?
- Ke ʻike nei ʻoe ua luhi kou mau ʻiʻo?
- I ka makahiki hea i hoʻomaka ai nā hōʻailona?
Ma hope o kēlā, hiki ke hana ʻia kekahi mau hoʻokolohua e like me kēia e kāpae i nā kūlana ʻē aʻe a hōʻoia i ka hōʻailona.
| Hoʻāʻo | He aha kāu e ʻike ai ma kēia? |
|---|---|
| Hoʻāʻo Creatine kinase (CK) | He hoʻāʻo koko kēia e ana i ka pae o kahi enzyme e hōʻiliʻili ana i loko o ke koko ke hōʻino ʻia nā ʻiʻo. |
| Nā hoʻāʻo koko ʻē aʻe | E nānā no nā maʻi viral a i ʻole nā maʻi autoimmune ʻē aʻe. |
| ʻElekromyogram (EMG) | Ana ʻia ka hana uila i loko o nā ʻiʻo. |
| Ke aʻo ʻana i ke alakaʻi ʻana o nā aʻalolo (NCS) | Ana ia i ka wikiwiki o ka hele ʻana o nā hōʻailona uila ma o nā aʻalolo e kaohi ana i nā ʻiʻo. |
| ʻO ka hoʻāʻo paʻa loa: Muscle Biopsy | |
| ʻO kēia ke ala maikaʻi loa a maopopo loa e hōʻoia ai iā IBM. ʻO kāu hana ma ʻaneʻi, ʻo ia ke lawe i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo i hoʻopilikia ʻia ma lalo o ka anesthesia a nānā iā ia ma lalo o kahi microscope. A laila hiki iā ʻoe ke ʻike pono inā aia kēlā mau puʻupuʻu protein maʻamau ʻole (nā kino hoʻokomo) i ʻōlelo ʻia ma mua i loko o kēlā mau cell. | |
He aha nā lāʻau lapaʻau no kēia?
ʻO kēia kahi e pono ai mākou e ʻoiaʻiʻo. ʻAʻohe lāʻau lapaʻau no IBM i kēia manawa. ʻAʻole hana maikaʻi nā Corticosteroids a i ʻole nā lāʻau immunosuppressant i hoʻohana ʻia no nā maʻi mumū ʻē aʻe no kēia maʻi.
Akā, ʻaʻole ia manaʻo ʻaʻohe mea hiki iā kākou ke hana. Nui nā mea hiki iā kākou ke hana e mālama ai i ka maʻi a e maʻalahi ai ke ola.
- Hoʻōla Kino: He mea nui kēia. E kōkua nā hoʻomaʻamaʻa kūpono a me nā ʻano hana iā ʻoe e mālama i kou ikaika ʻiʻo no ka lōʻihi e hiki ai.
- ʻO ka Lapaʻau Hana: Ke paʻakikī kou maʻi i ka hana ʻana i nā hana o kēlā me kēia lā, e like me ke komo ʻana a i ʻole ka ʻai ʻana, e aʻo ʻia ʻoe i nā ʻano hana a me nā mea hana ʻē aʻe e hiki ai ke maʻalahi i kēlā mau hana.
- ʻO ke ʻano o ka ʻōlelo a me ka ʻōlelo: Inā pilikia ʻoe i ka moni ʻana, hiki i ke kauka ʻōlelo ke aʻo iā ʻoe i nā ala e ʻai palekana ai.
I ka hala ʻana o ka manawa, pono paha kekahi poʻe i kahi mea kōkua, e like me ka noho huila.
He aha kaʻu e hana ai e ola maikaʻi me kēia maʻi?
He maʻi holomua ʻo IBM. No laila, he nui kou manawa e hoʻomaʻamaʻa ai i nā loli e hiki mai ana. ʻOi aku ka maikaʻi o ka hana ʻana i kahi hoʻolālā lōʻihi e noho olakino kino a me ka noʻonoʻo.
Eia kekahi mau mea hiki iā ʻoe ke hana:
- E hoʻomau i kāu papahana hoʻoikaika kino: Inā paha me kahi mea hoʻoponopono kino a i ʻole nā hana home, ʻo ka hoʻomau ʻana i ka hana ʻana ma ke ʻano he maʻamau hiki ke kōkua i ka mālama ʻana i ka ikaika o kou mau ʻiʻo.
- E hoʻohana i kahi nohona olakino: E ʻai i ka meaʻai kaulike, e hiamoe pono, e hōʻemi i ke kaumaha, a mālama i nā pilina maikaʻi me kāu poʻe aloha. E hāʻawi kēia mau mea a pau iā ʻoe i ka ikaika.
- E hui pū me nā Hui Kākoʻo: E kamaʻilio me nā poʻe i loaʻa nā ʻike like i hiki iā ʻoe ke hāʻawi i ka hōʻoluʻolu noʻonoʻo nui a me nā ʻōlelo aʻoaʻo kūpono.
- E hana i nā hoʻololi ma ka home a ma ka hana: Nui nā hāmeʻa a me nā ʻano hana ma ka honua e hiki ke maʻalahi i kāu mau hana o kēlā me kēia lā. E ʻimi iā lākou.
- E ʻike pinepine i kāu kauka: E hoʻomau i ka launa pū ʻana me kāu kauka. Inā loaʻa iā ʻoe kekahi mau hōʻailona hou, e like me ka paʻakikī i ka moni ʻana, e hoʻomaopopo koke iā lākou.
- E makaʻala i nā hoʻokolohua lapaʻau: Ke hoʻāʻo mau nei nā kānaka noiʻi i nā lāʻau lapaʻau hou no IBM. Loaʻa paha iā ʻoe ka manawa kūpono e komo i kekahi o kēia mau hoʻokolohua.
ʻO ka Inclusion Body Myositis kahi maʻi e hiki ke ʻike koke ʻia i ka hapa lua o ke ola, me ke kumu ʻole. ʻAʻole ia he mea a kekahi e manaʻo ai. Akā, no ka mea, he huakaʻi lōʻihi loa ia, loaʻa iā ʻoe ka manawa nui e hoʻolālā ai no nā loli e hiki mai ana. Ma ka noʻonoʻo maikaʻi a me ka hoʻāʻo ʻana e mālama i kou olakino holoʻokoʻa, hiki iā ʻoe ke noho hauʻoli no nā makahiki he nui e hiki mai ana.
Leka Lawe-Home
- ʻO ka Inclusion Body Myositis (IBM) kahi maʻi e hoʻonāwaliwali mālie ai i nā ʻiʻo i ko kākou ʻelemakule ʻana. ʻAʻole ia he mea hoʻoweliweli i ke ola.
- ʻOiai ʻaʻohe lāʻau lapaʻau kūikawā no kēia, he mea nui loa ia e mālama i ka ikaika o nā ʻiʻo ma o ka hoʻoikaika kino a me ka hoʻoikaika kino.
- Ke noho nei me ka maʻi, hiki iā ʻoe ke hoʻomaikaʻi i kou ʻano ola ma ke aʻo ʻana i nā ala hou e hana ai i nā hana o kēlā me kēia lā a me ka hoʻohana ʻana i nā mea kōkua e maʻalahi ai lākou.
- Inā loaʻa iā ʻoe kekahi mau hōʻailona hou, e like me ka paʻakikī i ka ale ʻana, e hoʻomaopopo koke i kāu kauka.
- Me ka noʻonoʻo maikaʻi a me ka hoʻokele kūpono, hiki iā ʻoe ke ola maikaʻi me kēia maʻi.
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