He ʻulaʻula a he kino palupalu paha kāu keiki? E aʻo kākou e pili ana i ka Juvenile Dermatomyositis (JDM).

Ua ʻoi aku ka luhi o kāu keiki ma mua o ka maʻamau, ʻoiai ke holo a puni a piʻi paha i nā alapiʻi? A i ʻole, he mau kiko ʻulaʻula/poni kona ma kona maka a i ʻole nā ​​lima? Inā loaʻa iā ʻoe kēia mau hōʻailona, ​​mai hoʻokuke iā lākou me he mea maʻamau. He mea maʻamau paha kēia i waena o nā keiki, akā ʻaʻole ʻike ka nui o ka poʻe e pili ana i ia mea. Mai hopohopo, e kamaʻilio maopopo mākou e pili ana i ia mea.

He aha ka Juvenile Dermatomyositis (JDM)?

I ka ʻōlelo maʻalahi, ʻo Juvenile Dermatomyositis (JDM) kahi kūlana kahi i hoʻouka ʻia ai ko mākou ʻili ponoʻī, nā ʻiʻo, a me nā kīʻaha koko e kahi kīnā i loko o kā mākou ʻōnaehana pale. Kāhea mākou i kēlā mau maʻi he mau maʻi autoimmune. I loko o kēia, aia ka mumū i loko o ke kino. ʻO ke kumu nui kēia o ka ʻulaʻula o ka ʻili a me ka nāwaliwali o nā ʻiʻo . ʻO ke ʻano o "Juvenile" kēia no ka mea hoʻomaka ia i ka wā ʻōpiopio, ʻo ia hoʻi, i ka wā kamaliʻi.

Hiki i kēia maʻi ke hoʻolilo i mea paʻakikī i ke keiki ke ala aʻe, holo, piʻi i nā alapiʻi, a hana pū i nā hana o kēlā me kēia lā e like me ka hāpai ʻana i ko lākou mau lima a me ka hoʻopili ʻana i ko lākou lauoho. Ma ke ʻano he makua, hiki ke kaumaha loa ka ʻike ʻana i kahi keiki e hakakā nei e like me kēia. Akā ʻo ka mea nui loa , me ka mālama pono ʻana, hiki ke hoʻomalu maikaʻi ʻia kēia mau hōʻailona a hiki i ke keiki ke loaʻa kahi ola maikaʻi .

ʻO wai ka mea i loaʻa pinepine i kēia maʻi?

Hoʻomaka pinepine ʻo JDM i nā keiki ma waena o 5 a me 10 mau makahiki. ʻOi aku ka maʻamau i nā kaikamahine ma mua o nā keikikāne. ʻOiai hiki ke hoʻopilikia i kekahi keiki, 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 me 50. Ua kapa ʻia ʻo Dermatomyositis. Aia nā mea ʻelua i loko o ka hui like o nā maʻi.

He aha nā hōʻailona nui o JDM?

Hiki i ke keiki ke hōʻike i kekahi mau hōʻailona mua o kēia maʻi ma mua o ka ʻike ʻia ʻana. ʻO nā hōʻailona nui o ka maʻi e komo pū ana me nā loli o ka ʻili a me ka nāwaliwali o nā ʻiʻo. E nānā kākou i kēia mau mea ma ke kaʻawale.

Nā hōʻailona e hiki ke kū mai i nā hihia koʻikoʻi

He mea kākaʻikahi kēia mau mea. Eia nō naʻe, inā lilo ka JDM i mea koʻikoʻi, hiki iā ia ke hoʻopilikia i ka hanu ʻana o ke keiki a me ka moni ʻana i nā ʻiʻo . Hiki i kēia mau hōʻailona ke komo pū me:

• Paʻa mau ka meaʻai i ka moni ʻana.
• Hoʻololi ka leo, nāwaliwali.
• Paʻakikī ka hanu ʻana (Dyspnea).

He aha nā pilikia inā ʻaʻole mālama ʻia?

Mai hopohopo i kēia. E pili ana kēia i ka mea hiki ke hana inā ʻaʻole ʻoe e loaʻa i ka lāʻau lapaʻau. Me nā lāʻau lapaʻau holomua o kēia wā, hiki ke pale ʻia ka nui o kēia mau mea.

• Nā waihona kalipuna: Hiki ke hana ʻia nā puʻupuʻu paʻakikī e like me ka pōhaku ma lalo o ka ʻili. Hiki i kēia ke hoʻolilo i mea paʻakikī ke hoʻoneʻe i nā ʻiʻo.
• Nā ʻūmiʻi ʻiʻo: Lilo nā ʻiʻo i paʻa a hiki ke kū ʻia ʻoiai ke kūlou ʻia nā hono.
• Nā ʻōpū maʻi: Hiki ke loaʻa nā ʻōpū ma ka ʻili a i loko paha o ka ʻōpū.
• Nāwaliwali koʻikoʻi: Hiki iā ʻoe ke lilo i nāwaliwali loa a hiki ʻole iā ʻoe ke hanu a ale paha.

No ke aha lā e hana nei kēia JDM? He aha ke kumu?

E noʻonoʻo i kēia ʻano: ua like ko kākou kino me kahi pā kaua. Aia i loko he pūʻali koa i kapa ʻia ʻo ka ʻōnaehana pale. ʻO kā lākou hana ke pale aku iā kākou ma ka hoʻouka ʻana i nā ʻenemi haole e like me nā maʻi a me nā bacteria. I loko o kahi maʻi autoimmune e like me JDM, hoʻomaka hewa kēia pūʻali koa e hoʻouka i kā kākou mau cell maikaʻi ponoʻī (ʻili, ʻiʻo).

ʻAʻole ʻike ʻia ke kumu kikoʻī o kēia hana hewa ʻana o ka ʻōnaehana pale, akā manaʻoʻiʻo nā kauka ua hiki ke hana ʻia e ka hui pū ʻana o kahi ʻāpana genetic a me nā mea pili i ke kaiapuni (no ka laʻana, kahi maʻi viral).

Pehea e ʻike pololei ai ke kauka i kēia maʻi?

Ke lawe ʻoe i kāu keiki i ke kauka, e nānā pono mua ʻo ia i ke keiki, e nānā ana i nā mea e like me nā ʻulaʻula ʻili a me ka ikaika o nā ʻiʻo. Eia kekahi, hiki ke hana ʻia kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.

• Nā hoʻāʻo koko: Hiki i kēia ke nānā i ke kiʻekiʻe o ka mumū i loko o ke koko a me ke kiʻekiʻe o nā enzymes ʻiʻo i hana ʻia ke hōʻino ʻia nā ʻiʻo. Hiki iā lākou ke nānā i nā protein kūikawā (autoantibodies) i ʻike ʻia ma JDM.
• Electromyography (EMG): Pili kēia i ke kau ʻana i nā electrodes e like me ke nila maikaʻi loa i loko o nā ʻiʻo a me ke ana ʻana i kā lākou hana uila.
• MRI (Magnetic Resonance Imaging): Hoʻohana kēia hoʻāʻo i kahi magnet nui e kiʻi i kahi kiʻi maopopo o ka mumū a me ka pehu i loko o ke kino, ʻoi aku hoʻi i nā ʻiʻo.
• Biopsy ʻiʻo: Pili kēia i kahi hana ʻoki liʻiliʻi e wehe i kahi ʻāpana liʻiliʻi o nā ʻiʻo ʻiʻo a nānā iā ia ma lalo o kahi microscope. He mea nui loa kēia e hōʻoia inā he JDM a i ʻole kekahi maʻi ʻiʻo ʻē aʻe (e.g. muscular dystrophy).
• ʻO ke kāpili nailfold: Hoʻohana ʻia kahi mea hana kūikawā e nānā i nā kīʻaha koko liʻiliʻi (capillaries) ma lalo o nā kui o ke keiki no ka pehu ʻana. Hiki ke ʻike ʻia kēia mau kīʻaha koko he mau loli kikoʻī 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, kaohi ʻana i nā hōʻailona, ​​a kōkua i ke keiki e ola i kahi ola maikaʻi. Hiki i ka lāʻau lapaʻau ke hoʻoulu i nā manawa o ka hoʻomaha ʻana ke nalo nā hōʻailona.

Nā lāʻau lapaʻau

• Nā Corticosteroids:ʻO kēia nā ʻano lāʻau lapaʻau nui i hāʻawi mua ʻia. Hoʻemi koke kēia i ka mumū. Hāʻawi mua ʻia lākou i nā mahele kiʻekiʻe, a laila hoʻemi mālie ʻia ka mahele i ka wā e emi ai nā hōʻailona.
• ʻO Methotrexate: ʻO kekahi lāʻau koʻikoʻi i hāʻawi ʻia me a ma hope paha o nā corticosteroids. Hoʻomalu ia i ka hana o ka ʻōnaehana pale.
• Hydroxychloroquine: He kōkua nui kēia lāʻau lapaʻau i ka kaohi ʻana i ka ʻili.
• ʻO ka immunoglobulin intravenous (IVIG): Pili kēia i ka hāʻawi ʻana i nā antibodies i hoʻomaʻemaʻe ʻia i loko o ke kino ma o kahi aa. Hiki i kēia ke ālai i nā antibodies e hōʻino nei i ko mākou kino.
• Nā lāʻau lapaʻau ʻē aʻe: Inā koʻikoʻi ke kūlana a ʻaʻole pane i nā lāʻau lapaʻau ʻē aʻe, hiki i ke kauka ke kuhikuhi i nā lāʻau lapaʻau ʻē aʻe e like me cyclosporine a me rituximab.

Nā loli o ke ola a me nā lāʻau lapaʻau ʻē aʻe

Ma waho aʻe o ka lāʻau lapaʻau, he mea nui loa kēia mau mea.

• Hoʻōla kino: Hoʻomaʻamaʻa ka mea hoʻōla kino i nā hoʻomaʻamaʻa e hoʻoikaika i nā ʻiʻo, e hoʻemi i ka paʻakikī o ke hui, a hoʻonui i ka maʻalahi.
• Ka pale ʻana i ka lā: He mea nui loa kēia. Hiki i ka lā ke hoʻonui i nā ʻōhū ʻili. No laila, pono ʻoe e hoʻohana mau i kahi sunscreen me ka SPF o 30 a ʻoi aku paha. E ʻaʻahu i ka pāpale a me nā aniani maka. E pale i ka lā ikaika ma waena o 10 am a me 4 pm.
• ʻAi maikaʻi: ʻO ka ʻai ʻana i ka meaʻai momona i nā mea kanu, nā huaʻai, nā protein lean, a me nā palaoa holoʻokoʻa e hiki ke kōkua i ka hōʻemi ʻana i ka mumū i loko o ke kino.
• Lapaʻau ʻōlelo: Aʻo aku kekahi mea lapaʻau ʻōlelo i nā keiki me nā pilikia ale ʻana i nā ʻano hana ʻai palekana a me nā hoʻomaʻamaʻa kino.

He aha kā kākou e noʻonoʻo ai no ka wā e hiki mai ana?

ʻAʻohe lāʻau lapaʻau no JDM. Akā, mai hopohopo. ʻO ka nūhou maikaʻi, me ka lāʻau lapaʻau, hiki i nā keiki he nui ke ola i nā ola holomua a hana ikaika.

E hoʻomaha ka hapa nui o nā keiki i loko o ʻelua mau makahiki o ka hoʻomaka ʻana o ka lāʻau lapaʻau. Hiki paha iā ʻoe ke hoʻōki i ka lawe ʻana i ka lāʻau lapaʻau i kēlā manawa. Eia nō naʻe, pono ʻoe e hoʻomau i ka mālama ʻana i ka ʻai maikaʻi, ka hoʻoikaika kino, a me ka pale ʻana i ka lā e pale ai i nā hōʻailona mai ka hoʻi hou ʻana mai.

Loaʻa paha i kekahi mau keiki ka maʻi no ka manawa lōʻihi, a nalowale paha nā hōʻailona a laila ʻike hou ʻia. Eia nō naʻe, ʻaʻole he maʻi hoʻoweliweli ola ʻo JDM. Me ka mālama lapaʻau kūpono, hiki ke mālama maikaʻi ʻia ke ʻano a hiki i nā keiki ke ola i kahi ola maʻamau e like me nā keiki ʻē aʻe.