Ke luhi iki nei kāu keiki? Me he mea lā ke paʻakikī nei iā ia ke piʻi i nā alapiʻi, holo, a pāʻani paha? He mau ʻāpana ʻili ʻulaʻula-poni kona a puni kona mau maka a me kona mau papālina? I kekahi manawa manaʻo mākou he maʻi maʻi maʻamau kēia, akā hiki ke lilo i mea koʻikoʻi. I kēia lā ke kamaʻilio nei mākou e pili ana i ka Juvenile Dermatomyositis, a i ʻole JDM no ka pōkole, kahi maʻi kakaikahi e hoʻopilikia i nā keiki a hōʻike ʻia me nā hōʻailona like. Mai makaʻu i ka inoa lōʻihi, e wehewehe kākou i nā mea āpau ma nā ʻōlelo maʻalahi.
He aha ka Juvenile Dermatomyositis (JDM)?
I ka ʻōlelo maʻalahi, ʻo JDM kahi kūlana kahi e hele koke ai ka ʻōnaehana pale o ko mākou kino, ʻo ia hoʻi ka ʻōnaehana pale , a hoʻomaka e hoʻouka i nā ʻāpana olakino o ko mākou kino ponoʻī. ʻO ke kikoʻī, hoʻopilikia nui ia i ko mākou ʻili ponoʻī, nā kīʻaha koko liʻiliʻi, a me nā ʻiʻo . I ka lāʻau lapaʻau, ʻo nā maʻi e hana kūʻē ai kā mākou ʻōnaehana ponoʻī iā mākou ua kapa ʻia ʻo 'nā maʻi autoimmune' . E noʻonoʻo e hoʻouka ana ka pūʻali koa e pale ana i ko mākou ʻāina i ko mākou poʻe ponoʻī.
Hoʻonāwaliwali kēia ʻano i nā ʻiʻo o ke keiki. He mea paʻakikī kēia iā lākou ke kū i luna, piʻi i nā alapiʻi, holo, pāʻani, a i kekahi manawa hana i nā mea maʻalahi e like me ke kāhili ʻana i ko lākou lauoho. Ma ke ʻano he makua, he mea maopopo ke kaumaha a me ka makaʻu ke lohe ʻoe e pili ana i kekahi ʻano olakino e pale ana i kāu keiki mai ka hana ʻana i nā hana o kēlā me kēia lā. Akā ʻo ka mea maikaʻi loa, hiki i nā lāʻau lapaʻau no JDM ke kāohi pono i nā hōʻailona a hoʻomaikaʻi i ke ola o kāu keiki.
ʻO wai ka mea kūpono loa e loaʻa i kēia maʻi?
He maʻi laha ʻole ka JDM. Hoʻomaka pinepine ia i nā keiki ma waena o 5 a me 10 mau makahiki. ʻElua hoʻi ka nui o kona maʻamau i nā kaikamahine ma mua o nā keikikāne. ʻOiai hiki ke hoʻopilikia i kekahi keiki, ua ʻike ʻia e ka noiʻi he ʻoi aku ka maʻamau i nā keiki keʻokeʻo.
Hiki i nā pākeke ke ʻike i kēia mau hōʻailona. Akā ʻike pinepine ʻia ia i nā makahiki 40 a 50 paha. Ke ulu kēia maʻi i nā pākeke, kapa mākou iā ia ʻo Dermatomyositis . ʻO JDM a me Dermatomyositis nā mea ʻelua i ka hui like, ʻo ia hoʻi, ʻelua mau maʻi e pili ana i ka hui o nā maʻi mumū o nā ʻiʻo i kapa ʻia ʻo Myositis .
He aha nā ʻano mua o JDM?
Ma mua o ka ʻike ʻia ʻana o ka maʻi, e ʻike paha ʻoe i kekahi mau loli i kāu keiki. ʻO kēia paha nā hōʻailona mua o ka maʻi. Inā ʻoe e hoʻolohe i kēia mau mea, hiki iā ʻoe ke ʻike koke i ke kauka.
| Hiʻohiʻona mua | He wehewehe maʻalahi |
|---|---|
| Luhi mau | Manaʻo mau ke keiki i ka luhi a nalowale ka hoihoi i ka holo a me ka pāʻani e like me ma mua. |
| Kuni me ke kumu ʻole | Hiki iā ʻoe ke wela a mehana paha no ke kumu ʻē aʻe. |
| ʻO ka pehu ʻana a i ʻole ka ʻoʻoleʻa o nā hono | Ke ala ʻoe i ke kakahiaka, ʻoʻoleʻa kou mau hono, a he pehu iki paha. |
| Makemake nui | Ke emi nei ka makemake e ʻai, a ʻaʻole paha ʻoe e noi nui i ka meaʻai e like me ma mua. |
| ʻEha ʻiʻo | E ʻōlelo paha ke keiki ua ʻeha kona mau ʻiʻo i ka wā o nā hana maʻamau a i ʻole ka pāʻani. |
| ʻO ka pohō kaumaha me ke kumu ʻole | Inā e emi ana ke kaumaha o ke keiki me ka ʻole o ke kāohi ʻana i kā lākou ʻai, pono ʻoe e hopohopo. |
| ʻŌhū ʻili | Hiki ke ʻike ʻia kahi ʻulaʻula ma ka maka a me nā lima. Hiki ke hoʻonui ʻia nā loli o ka ʻili ke hōʻike ʻia i ka lā. |
E kamaʻilio hohonu kākou e pili ana i nā hōʻailona nui ʻelua o ka maʻi.
Ke hōʻoia ʻia ʻo JDM, aia ʻelua mau hōʻailona mau loa: nā loli o ka ʻili a me ka nāwaliwali o nā ʻiʻo.
1. ʻŌhūhū ʻili
Hiki i nā keiki me JDM ke loaʻa i kahi ʻulaʻula ʻili kikoʻī loa.
- Nā loli o ka helehelena: Hoʻomaka kēia me nā papālina a me nā lihilihi e lilo ana i ʻulaʻula a poni paha . I kekahi manawa ke nānā aku nei nā lihilihi i ka pehu, no laila e kuhihewa paha nā kauka i ka wā mua he maʻi ʻaleka maʻalahi.
- Nā kui lima, nā kuli, a me nā kuʻekuʻe lima: I ka hala ʻana o ka manawa, e ulu paha nā ʻāpana maloʻo a ʻulaʻula a i ʻole nā puʻupuʻu ma nā kui lima, nā kuli, a me nā kuʻekuʻe lima o kāu keiki. I ka nānā mua ʻana, e like paha kēia me ka eczema a i ʻole ka psoriasis.
- ʻIke i ka lā: He hōʻailona koʻikoʻi loa kēia. Ke hōʻike ʻia kahi keiki me JDM i ka lā, e ʻoi aku ka ʻino o kēia ʻili.
2. Nāwaliwali o nā ʻiʻo
ʻO kēia kekahi hōʻailona nui a hoʻopilikia loa o JDM. ʻIke nui ʻia kēia nāwaliwali ma nā ʻiʻo kokoke i waenakonu o ke kino. ʻO ia hoʻi:
- Nā poʻohiwi
- ʻĀʻī
- ʻĀpana ʻūhā
- Nā ʻiʻo ʻōpū
- Nā lima a me nā wāwae o luna
Ke nāwaliwali kēia mau ʻiʻo, hiki ke paʻakikī loa i ke keiki ke hana i nā hana o kēlā me kēia lā. Eia kekahi laʻana, hiki ke paʻakikī ke ala aʻe mai kahi noho, piʻi i nā alapiʻi, puka i waho o ka noho, holo, a me ka hamo ʻana i ko lākou lauoho.
I nā hihia koʻikoʻi, hiki i ka JDM ke hoʻopilikia i ka hanu ʻana o ke keiki a me ke ale ʻana i nā ʻiʻo . Hiki i kēia ke hana i ka ʻū ʻana, ka leo hoarse, a me ka paʻakikī o ka hanu ʻana (dyspnea).
He aha nā pilikia e hiki mai ana inā ʻaʻole mālama ʻia?
He maʻi olakino ʻo JDM e pono ai ke kōkua koke ʻia e ke kauka. Inā ʻaʻole mālama ʻia, hiki ke loaʻa nā pilikia koʻikoʻi.
- Nā waihona kalipuna: Hiki ke hana ʻia nā puʻupuʻu paʻakikī a ʻōkaʻi ma lalo o ka ʻili. Hiki i kēia ke kaupalena i ka neʻe ʻana o nā ʻiʻo a hōʻeha i ka ʻeha.
- ʻOki ʻana o nā ʻiʻo: Hoʻopōkole ʻia nā ʻiʻo a hoʻomaka e ʻoki i ka wā e kūlou ai nā hono. Hiki i kēia ke paʻakikī i ka hoʻolōʻihi ʻana i ka lālā.
- ʻUlu: Hiki ke loaʻa nā ʻeha ma ka ʻili a i ʻole ma ke ʻano gastrointestinal.
- Nāwaliwali koʻikoʻi: ʻO ka nāwaliwali koʻikoʻi o ka hanu ʻana a me ke ale ʻana i nā ʻiʻo hiki ke hoʻoweliweli i ke ola.
Akā, mai makaʻu ma hope o ka heluhelu ʻana i kēia. ʻO ia hoʻi, inā ʻaʻole mālama ʻia,He aha ka mea e hiki ke hana? I ka wā ma mua, i ka wā ʻaʻohe lāʻau lapaʻau kūpono no ka maʻi, ua make ma kahi o hoʻokahi o ʻekolu mau keiki me JDM. Akā i kēia lā, me nā lāʻau lapaʻau i hoʻomaikaʻi ʻia, ʻoi aku ma mua o 98% o nā keiki e ola ana i ʻelima mau makahiki ma hope o ka ʻike ʻana. ʻO ia ke kumu he mea nui ka ʻike mua a me ka lāʻau kūpono.
No ke aha kēia e hana nei? He aha ke kumu o JDM?
E like me kā mākou i kūkākūkā ai ma mua, he maʻi autoimmune ʻo JDM. Akā no ke aha e huli koke ai ko mākou ʻōnaehana pale ponoʻī iā mākou? ʻAʻole i loaʻa maoli i nā kauka kahi kumu kikoʻī no kēia .
Akā, aia kekahi mau kumumanaʻo e pili ana i kēia. ʻO kekahi kumumanaʻo nui, ʻo ia ka wā e komo ai kekahi mea, e like me ka maʻi viral, i loko o ke kino, hoʻomaka kā mākou ʻōnaehana pale e hakakā iā ia. Eia naʻe, ma hope o ka pau ʻana o ka maʻi, ʻaʻole e pau kēia ʻōnaehana pale i ka hakakā ʻana. Akā, ua manaʻoʻiʻo ʻia e hoʻomau ia i ka hana a hoʻomaka e hoʻouka i nā cell o ko mākou kino ponoʻī. Manaʻo pū nā kānaka noiʻi aia paha he ʻāpana genetic i kēia.
Pehea e ʻike ai ke kauka i kēia maʻi? (Diagnosis)
Ke lawe ʻoe i kāu keiki i ke kauka, e nānā pono mua ʻo ia i ke keiki. ʻOi aku hoʻi, e nānā lākou no ka ʻili a me ka ikaika o nā ʻiʻo. A laila e nīnau lākou iā ʻoe e pili ana i kāu mau hōʻailona.
Hana ʻia kekahi mau hoʻokolohua e hōʻoia i ka hōʻoia pololei.
- Nā hoʻāʻo koko: ʻAʻohe hoʻāʻo koko hoʻokahi e hiki ke ʻike koke i ka JDM. Eia nō naʻe, hiki i nā hoʻāʻo koko ke nānā i nā mea e like me nā pae mumū i loko o ke kino, nā pae o nā enzymes ʻiʻo e hōʻiliʻili i loko o ke koko ke hōʻino ʻia nā ʻiʻo, a me nā protein kikoʻī (autoantibodies) i ʻike pinepine ʻia ma JDM.
- Electromyography (EMG): Ma kēia hoʻāʻo, hoʻokomo ʻia nā electrodes liʻiliʻi e like me ke nila i loko o nā ʻiʻo a ana ʻia ka hana uila o kēlā mau ʻiʻo. Hiki i kēia ke kōkua i ka ʻike ʻana i nā ʻano ʻē i ka hana ʻiʻo.
- MRI (Magnetic Resonance Imaging): Hiki i kahi scan MRI ke hana i nā kiʻi kikoʻī o loko o ke kino. Hiki iā ia ke ʻike maopopo i nā mea e like me ka pehu palupalu a me ka mumū i loko o nā ʻiʻo.
- ʻO ka biopsy ʻiʻo: Ma kēia, hana ʻia kahi hana ʻoki liʻiliʻi e wehe i kahi ʻāpana liʻiliʻi loa o ka ʻiʻo mai ka ʻiʻo i hoʻopilikia ʻia a nānā iā ia ma lalo o kahi microscope. Hiki i kēia ke kōkua i ka hoʻoholo ʻana inā he mumū i loko o nā ʻiʻo a inā paha i hoʻokumu ʻia e JDM a i ʻole kekahi maʻi ʻē aʻe, e like me Muscular Dystrophy .
- ʻO ke kāpili ʻana o ke kui:He hoʻāʻo maʻalahi loa kēia a ʻeha ʻole. Hoʻohana ʻia kahi hāmeʻa me ke kukui kūikawā a me ka aniani hoʻonui e nānā i nā kīʻaha koko liʻiliʻi ma lalo o nā kui o ke keiki. Hoʻopulu pinepine ʻia kēia mau kīʻaha koko i nā keiki me JDM.
He aha nā lāʻau lapaʻau no JDM?
ʻO ka pahuhopu nui o ka mālama ʻana iā JDM ka hōʻemi ʻana i ka mumū i loko o ke kino a hoʻomaikaʻi i ke ʻano o ke ola o ke keiki. ʻOiai he nui nā keiki e noho me JDM no kekahi mau makahiki, hiki i ka mālama ʻana ke hoʻomalu maikaʻi i nā hōʻailona. Ma hope o ka mālama ʻana, nui nā keiki e hele i nā mahina a i ʻole nā makahiki me ka ʻole o nā hōʻailona. Kāhea mākou i kēia 'remission' .
Hiki ke hoʻokaʻawale ʻia nā ʻano lapaʻau i ʻelua ʻāpana nui.
| ʻAno lapaʻau | Wehewehena |
|---|---|
| Nā lāʻau lapaʻau | |
| Nā Corticosteroids | ʻO kēia nā ʻano lāʻau lapaʻau nui i hāʻawi mua ʻia. Hoʻemi koke lākou i ka mumū i loko o ke kino a kāohi pū i ka hana o ka ʻōnaehana pale. |
| ʻO Hydroxychloroquine | Hoʻohana pinepine ʻia kēia lāʻau lapaʻau e kāohi i nā ʻulaʻula ʻili. |
| ʻO ka immunoglobulin intravenous (IVIG) | Ma kēia, ua lawelawe ʻia nā antibodies i hoʻomaʻemaʻe ʻia mai nā mea hāʻawi koko olakino i ke kino i loko o kahi wai saline. Ke ālai nei kēia mau mea i nā antibodies ʻino a hōʻoluʻolu i ka ʻōnaehana pale. |
| ʻO Methotrexate | Hāʻawi ʻia kēia lāʻau lapaʻau i ka aneane o nā keiki me JDM. Hoʻopau pū ia i ka ʻōnaehana pale a kōkua i ka hōʻemi ʻana i ka hoʻohana ʻana i nā steroids. |
| Nā ʻAno Ola a me nā Lapaʻau | |
| Nā loli i ka ʻai | ʻO ka ʻai kaulike me nā huaʻai, nā mea kanu, nā ʻiʻo momona, nā momona olakino, a me nā palaoa piha e kōkua i ka hōʻemi ʻana i ka mumū. Inā pilikia ʻoe i ka moni ʻana, pono paha ka ʻōlelo aʻoaʻo kūikawā no ka meaʻai. |
| Hoʻōla kino | E hāʻawi ke kauka hoʻoponopono kino i ke keiki i nā hoʻomaʻamaʻa e hoʻoikaika ai i nā ʻiʻo, pale i ka ʻoʻoleʻa o nā hono, a pale i ka ʻeha. |
| Hoʻōla ʻŌlelo | Inā nāwaliwali nā ʻiʻo e pili ana i ka moni ʻana a i ʻole ka hanu ʻana, hiki i ke kauka ʻōlelo ke kōkua me ke kūlana maikaʻi a me nā ʻano ʻai palekana. |
| Ka palekana o ka lā | He mea nui loa kēia. E hoʻohana mau i ka sunscreen me SPF 30 a ʻoi aku paha. E ʻaʻahu i nā pāpale, nā aniani lā, a me nā lole e uhi ana i kou kino. He mea nui loa ia e pale i kāu keiki mai ka lā ikaika ma waena o 10 am a me 4 pm. |
Leka Lawe-Home
- He maʻi autoimmune kakaikahi ka Juvenile Dermatomyositis (JDM) e hoʻopilikia ana i nā keiki. ʻO ke ʻano kēia, hoʻouka ka ʻōnaehana pale ponoʻī o ke kino i ka ʻili a me nā ʻiʻo.
- ʻO nā hōʻailona nui he ʻulaʻula-poni ma ka ʻili (ʻoi aku hoʻi ma ka maka a me nā puʻupuʻu lima) a me ka nāwaliwali o nā ʻiʻo. E hopohopo inā hōʻike kāu keiki i nā hōʻailona o ka luhi a i ʻole ka paʻakikī i ka piʻi ʻana i nā alapiʻi.
- ʻAʻohe mea e makaʻu ai kēia. Me nā lāʻau lapaʻau holomua o kēia wā, hiki ke kaohi nui ʻia nā hōʻailona a hiki i ke keiki ke ola i kahi ola maʻamau a hana.
- He mea nui loa ka pale ʻana i ka lā. E hoʻomaʻamaʻa i ka hoʻohana ʻana i ka sunscreen i kēlā me kēia lā a e ʻaʻahu i ka pāpale. He mea nui kēia no ka kaohi ʻana i ka maʻi.
- Inā loaʻa iā ʻoe kahi kānalua iki ua loaʻa i kāu keiki kekahi o kēia mau hōʻailona, e nīnau koke aku i ke kauka kūpono . ʻO ka ʻike koke ʻana a me ka mālama ʻana e hiki ke hoʻopaʻa i ka wā e hiki mai ana o ke keiki.
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