E noʻonoʻo ʻoe ua paʻakikī koke ʻoe e ala aʻe mai kahi noho, a i ʻole ke hāpai ʻoe i kou lima e kāhili i kou lauoho, manaʻo ʻia ua mae kou lima. I ka manawa like, ʻike ʻia nā kiko poni liʻiliʻi a puni kou mau maka, ma kou ʻāʻī, a ma kou umauma. Ua hiki mai kēia iā ʻoe? Manaʻo paha ʻoe he luhi maʻamau kēia. Akā i kekahi manawa hiki ke lilo i hōʻailona o kahi maʻi koʻikoʻi a laha ʻole i kapa ʻia ʻo Dermatomyositis . Mai hopohopo, e kamaʻilio mākou e pili ana i nā mea āpau ma nā ʻōlelo maʻalahi.
He aha ka Dermatomyositis?
I ka ʻōlelo maʻalahi, ʻo Dermatomyositis kahi maʻi laha ʻole e hoʻonāwaliwali i nā ʻiʻo o ko mākou kino a hoʻoulu i nā ʻulaʻula ʻili. ʻO ia kekahi o nā maʻi (myopathy) e hoʻopilikia i nā ʻiʻo. Hiki i kēia maʻi ke hana i nā kūlana koʻikoʻi e like me ka paʻakikī o ka hanu ʻana a me ke ale ʻana.
Hiki ke ulu mālie kēia mau hōʻailona i nā mahina no kekahi poʻe. Akā no kekahi poʻe, hiki ke hele koke mai. No laila, inā loaʻa iā ʻoe kekahi o kēia mau hōʻailona, he mea nui e ʻike koke i kāu kauka. ʻO ka wikiwiki o ka hoʻomaka ʻana o ka lāʻau lapaʻau, ʻoi aku ka maikaʻi o ka pale ʻana i nā pilikia koʻikoʻi.
He mea kākaʻikahi loa, ʻoiai i loko o ka makahiki mua ma hope o ka hoʻomaka ʻana o nā hōʻailona, hiki i ka maʻi ke make. Hoʻonui pū ia i ka pilikia o ka loaʻa ʻana o kekahi mau ʻano maʻi kanesa.
He aha ka ʻokoʻa ma waena o ka dermatomyositis a me ka lupus?
Ua lohe paha ʻoe i kahi maʻi i kapa ʻia ʻo lupus. Ua like ka Dermatomyositis me ka lupus a me nā maʻi autoimmune ʻē aʻe. Eia nō naʻe, aia kekahi mau ʻokoʻa maopopo ma waena o nā mea ʻelua. ʻOiai ʻaʻole i ʻike ʻia ke kumu pololei o ka dermatomyositis, ʻaʻole ia i hoʻokaʻawale ʻia he maʻi autoimmune.
E nānā kākou i kēia papa e hoʻākāka hou aku i ka ʻokoʻa.
| ʻAno | Lupus | ʻO ka maʻi ʻili |
|---|---|---|
| Nā hōʻailona nui | ʻEha nā hono, ka ʻike ʻili a me nā ʻōhūhū, nā hopena ma nā ʻōpū o loko (lolo, māmā, puʻupaʻa). Hele mai nā hōʻailona a hele aku. | Ka nāwaliwali o nā ʻiʻo a me nā ʻōhū ʻili kikoʻī. Ka hōʻino ʻana o nā ʻiʻo. |
| ʻIkepili | Ma muli o nā hoʻokolohua koko a me nā hōʻailona kikoʻī. | Nā hoʻāʻo koko, nā biopsies ʻili a me nā ʻiʻo, a me nā scan. |
He mea nui e ʻike a mālama i kēia mau kūlana ʻelua i ka hikiwawe loa. Inā loaʻa iā ʻoe kekahi mau hōʻailona hou, e ʻike koke i ke kauka.
ʻO wai ka mea i loaʻa pinepine i kēia maʻi?
Hiki i kekahi ke loaʻa i ka dermatomyositis, akā aia kekahi mau hui i ka pilikia nui aʻe.
- No nā keiki ma waena o 5 a me 15 mau makahiki.
- No nā mākua ma waena o 40 a me 60 mau makahiki.
- ʻOi aku ka nui o ka ʻike ʻana o nā wāhine i kēia maʻi ma mua o nā kāne.
Akā, e hoʻomanaʻo, he maʻi laha ʻole kēia. Ma ka awelika, hoʻokahi wale nō i loko o hoʻokahi haneli tausani kānaka e loaʻa i kēia maʻi i kēlā me kēia makahiki.
Pehea ka hopena o kēia maʻi i ke kino a me ka pilikia o ka maʻi kanesa?
ʻO Dermatomyositis kahi maʻi e hiki ke hoʻopilikia iā ʻoe no ke koena o kou ola. Inā koʻikoʻi ka pōʻino i kou mau ʻiʻo, ʻaʻole paha ʻoe e hiki ke hoʻohana pono i kahi ʻāpana o kou kino, hiki ke alakaʻi i kekahi ʻano kīnā. Hana pinepine kēia i loko o kekahi mau makahiki, akā no kekahi poʻe, ʻoi aku ka wikiwiki o kēia nāwaliwali o nā ʻiʻo.
Eia kekahi , ʻo ka pilikia nui loa ka loaʻa ʻana o ka maʻi kanesa.
Ua hōʻike ʻia nā noiʻi he 15% o ka poʻe me ka dermatomyositis ka pilikia o ka loaʻa ʻana o kekahi ʻano maʻi kanesa ma hope aku o ke ola.
ʻO nā ʻano maʻamau o ke kanesa i ʻike ʻia me kēia maʻi:
- Ka maʻi ʻōpū
- Ka maʻi ʻaʻai māmā
- ʻO ka maʻi ʻōpū
- Ka maʻi ʻaʻai umauma
- Ka maʻi ʻaʻai kolona
No laila, inā ua ʻike ʻia ʻoe me kēia maʻi, he mea nui loa e kamaʻilio ākea me kāu kauka e pili ana i kou pilikia o ka maʻi ʻaʻai a me nā nānā ʻana e pono e hana ʻia no ia.
He aha nā hōʻailona o ka dermatomyositis?
ʻO nā hōʻailona nui ʻelua o kēia maʻi, ʻo ia ka nāwaliwali o nā ʻiʻo a me nā ʻulaʻula o ka ʻili.No kekahi poʻe, ʻike ʻia nā hōʻailona ʻelua i ka manawa like. No kekahi poʻe, ʻike ʻia kekahi hōʻailona i nā hebedoma, nā mahina, a i ʻole nā makahiki ma hope o kekahi.
E nānā kākou i kēia mau hiʻohiʻona me nā kikoʻī hou aku.
| ʻAno hiʻohiʻona | Ka wehewehe a me nā laʻana |
|---|---|
| Nāwaliwali o nā ʻiʻo | Hiki i kēia nāwaliwali ke hoʻolilo iā ia i mea paʻakikī ke hana i nā hana o kēlā me kēia lā. Eia kekahi laʻana:
|
| ʻŌhū ʻili | ʻIke ʻia kēia mau ʻeha ma nā wahi i hōʻike ʻia i ka lā. He poni-ʻulaʻula ko lākou kala a he pehu iki paha. ʻO nā wahi maʻamau:
|
| Nā hiʻohiʻona ʻē aʻe |
|
Loaʻa i kekahi mau keiki ka maʻi a nalowale loa nā hōʻailona i ko lākou ulu ʻana. Eia nō naʻe, i loko o 80% o nā maʻi, he maʻi ia no ke ola holoʻokoʻa (mau). ʻO ke ʻano kēia, e hoʻi hou mai nā hōʻailona i kēlā me kēia manawa.
He aha ke kumu o kēia?
ʻO ka ʻoiaʻiʻo, ʻaʻole maopopo i nā loea ke kumu pololei o ka dermatomyositis, akā aia kekahi mau kumu i manaʻo ʻia e kōkua i ia.
- Nā kumu hoʻoilina: Manaʻo kekahi mau noiʻi he ʻano hoʻoilina paha kēia i hoʻoili ʻia mai kēlā hanauna a i kēia hanauna.
- Nā pilikia autoimmune: E like me kā mākou i kūkākūkā ai ma mua, ua like kēia me nā maʻi autoimmune. ʻO ke ʻano kēia, hiki i ka ʻōnaehana pale, ka mea e pale ai i ko mākou kino, ke hoʻouka hewa i ko mākou mau ʻiʻo olakino a me nā hunaola ʻili.
- Nā maʻi viral: Hōʻike kekahi mau hōʻike e hiki i kahi maʻi viral, ke hoʻoholo ʻia, ke hoʻoulu i ka Dermatomyositis.
- Nā kumu o ke kaiapuni: Ua ʻike ʻia kekahi mau noiʻi e hiki i ka noho ʻana ma nā wahi me ka maikaʻi ʻole o ka ea ke kōkua i ka ulu ʻana o kēia maʻi.
Pehea e ʻike ai i ka maʻi?
Ma hope o ka hoʻolohe ʻana o kāu kauka i kāu mau hōʻailona, e kauoha ʻo ia i kekahi mau hoʻokolohua e hōʻoia i ka hōʻailona.
| ʻAno hoʻāʻo | He aha kāu e ʻike ai i loko o ia mea? |
|---|---|
| Nā hoʻāʻo koko | Ke nānā nei lākou i ka piʻi ʻana o nā pae o nā enzymes e hōʻiliʻili i loko o ke koko ke hōʻino ʻia nā ʻiʻo, a me nā autoantibodies e hōʻike ana i ka hana o ka ʻōnaehana pale. |
| Biopsy | Lawe ʻia kahi ʻāpana liʻiliʻi loa o ka ʻiʻo mai kahi ʻeha ʻili a mai kahi ʻiʻo a nānā ʻia ma lalo o kahi microscope. Hiki i kēia ke hōʻoia inā he mumū i loko o ka ʻiʻo. |
| Nā hoʻokolohua kiʻi | Hiki ke hana ʻia kahi MRI (Magnetic Resonance Imaging) scan a i ʻole X-ray umauma e nānā i ke kūlana o nā ʻiʻo, nā aʻalolo, nā māmā, a me nā ʻōpū ʻē aʻe. |
| Hoʻāʻo EMG | He hoʻāʻo ka Electromyography (EMG) e ana i ka hana uila o nā ʻiʻo a me nā aʻalolo. Hiki i kēia ke kōkua i ka hoʻoholo ʻana inā ua hana ʻia ka nāwaliwali o nā ʻiʻo e ka maʻi ponoʻī a i ʻole kekahi kumu ʻē aʻe. |
He aha nā lāʻau lapaʻau no ka dermatomyositis?
ʻOiai ʻaʻole hiki ke ho'ōla ʻia ka dermatomyositis, nui nā lāʻau lapaʻau kūpono e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona, hōʻemi i ka hōʻino ʻana o nā ʻiʻo, a kōkua iā ʻoe e ola i kahi ola maʻamau. E koho kāu kauka i ka lāʻau lapaʻau kūpono loa e pili ana i ke ʻano a me ke koʻikoʻi o kāu mau hōʻailona.
- Corticosteroids: Hoʻemi kēia mau lāʻau i ka mumū i loko o nā ʻiʻo.
- Hoʻōla kino: Inā ua hōʻino ʻia nā ʻiʻo, he mea nui loa ka hoʻoikaika kino a me ka hoʻōla kino e hoʻoikaika hou iā lākou. ʻO ka ikaika o nā ʻiʻo, ʻoi aku ka paʻa o ko lākou kūpaʻa ʻana i ka hōʻino ʻia e ka maʻi.
- Nā lāʻau lapaʻau immunosuppressant: Hoʻōki kēia mau lāʻau i ka ʻōnaehana pale mai ka hoʻouka ʻana i nā ʻōnaehana olakino.
- ʻO ka immunoglobulin intravenous (IVIg): He lāʻau lapaʻau kēia e hāʻawi ʻia ai ka immunoglobulin, kahi ʻāpana o ko kākou koko ponoʻī, ma waho o ke kino, e like me ka saline. Kōkua kēia i ka kaohi ʻana i ka hana hewa ʻana o ka ʻōnaehana pale.
- Hoʻōla ʻōlelo: Inā nāwaliwali nā ʻiʻo o ka puʻu a paʻakikī ke ale, hiki i ka hoʻōla ʻōlelo ke kōkua i ka hoʻoikaika ʻana i kēlā mau ʻiʻo.
Pehea e mālama ai i nā hōʻailona?
He huakaʻi lōʻihi ka noho ʻana me kēia maʻi, no laila he mea nui loa ka mālama ʻana i nā hōʻailona.
- Mai hōʻalo i ka hoʻoikaika kino: E hana i nā hoʻomaʻamaʻa a kāu kauka a mea hoʻoponopono kino paha e hāʻawi ai iā ʻoe e like me kā lākou e ʻōlelo ai iā ʻoe. E kōkua kēia i ka mālama ʻana i kou mau ʻiʻo i ikaika.
- E hoʻohana pono i ka lāʻau lapaʻau: E lawe i ka lāʻau lapaʻau i kauoha ʻia e kāu kauka no ka lōʻihi i kuhikuhi ʻia.
- E pale iā ʻoe iho mai ka lā: He mea nui loa kēia. Hiki i nā kukuna ultraviolet (UV) i ka lā ke hōʻino i ka ʻili. No laila, e kaupalena i kou manawa i ka lā. Inā ʻoe e hele i waho,E hoʻohana i kahi pale lā maikaʻi me ka liʻiliʻi o SPF 50+. E hoʻopili hou i kēlā me kēia ʻelua hola.
- E ʻike pinepine i kāu kauka: Pono ʻoe e ʻike pinepine i ke kauka e nānā i kāu mau hōʻailona a ʻike inā e loli ana kou kūlana.
Nā mea hou aku e ʻike ai e pili ana i kēia maʻi
He mea maʻamau ke makaʻu i ka wā e ʻike ʻia ai ʻoe he dermatomyositis. Hiki ke lilo i mea hoʻohoka ke ʻike he maʻi ia no ke ola holoʻokoʻa, a he maʻi make paha. Akā e hoʻomanaʻo, ʻo ka wikiwiki o kou ʻike ʻia ʻana a hoʻomaka i ka mālama ʻana, ʻoi aku ka maikaʻi o kou manawa e ola maikaʻi ai.
ʻOiai ʻaʻohe lāʻau lapaʻau no kēia maʻi, 80% o ka poʻe e maʻi mau ana me nā hōʻailona. Eia nō naʻe, me ka mālama ʻana, hiki i kahi 20% o ka poʻe ke hoʻokō i ka hoʻomaha lōʻihi me ka ʻole o nā hōʻailona.
ʻO ka pilikia o ka make he haʻahaʻa e like me 5%. Eia nō naʻe, hiki i kekahi mau kumu ke hoʻonui i kēia pilikia:
- Ka lohi o ka hoʻomaka ʻana o ka lāʻau lapaʻau ma mua o 6 mau mahina.
- ʻOiai ma luna o 60 mau makahiki.
- Loaʻa nā hōʻailona koʻikoʻi.
- Maʻi e hoʻopilikia ana i ka ʻāʻī, nā māmā, a i ʻole ka puʻuwai.
- Ke loaʻa nei ka maʻi kanesa a i ʻole ke loaʻa ʻana o kahi maʻi hou.
Āhea wau e ʻike ai i ke kauka?
Inā loaʻa iā ʻoe ka nāwaliwali o nā ʻiʻo hou, ʻoiai inā hele pū me ka ʻulaʻula ʻili, e ʻike koke i kāu kauka. E like me kā mākou i ʻōlelo ai ma mua, ʻo ka wikiwiki o ka loaʻa ʻana o ka lāʻau lapaʻau, ʻo ka wikiwiki hoʻi e hiki ai iā ʻoe ke pale aku i nā pilikia koʻikoʻi.
Mai poina e nīnau i kēia mau nīnau ke ʻike ʻoe i kāu kauka:
- Loaʻa iaʻu ka Dermatomyositis a i ʻole kekahi maʻi ʻē aʻe?
- He aha nā hoʻokolohua e pono ai iaʻu e hana?
- He aha nā lāʻau lapaʻau e pono ai iaʻu a pehea ka lōʻihi e pono ai iaʻu?
- Pono anei au e hoʻāʻo ʻia no ka maʻi ʻaʻai?
E hana i kahi hoʻolālā me kāu kauka e pili ana i kāu huakaʻi lapaʻau. E hāʻawi kēia iā ʻoe i kahi ʻike maikaʻi aʻe i ka mea e manaʻo ai ma hope a me ka mea e hana ai inā e ʻoi aʻe ka ʻino o kāu mau hōʻailona.
Leka Lawe-Home
- He maʻi laha ʻole ka Dermatomyositis e hoʻoulu ai i ka nāwaliwali o nā ʻiʻo a me nā ʻeha ʻili kūikawā.
- He mea nui loa e ʻike koke i ke kauka inā ʻike ʻoe i nā hōʻailona. Hiki i ka mālama koke ke pale i nā pilikia koʻikoʻi.
- Ma muli o ka maʻi maʻamau he maʻi ia no ke ola holoʻokoʻa, pono ka mālama ʻana i ka wā lōʻihi.
- He mea nui e lawe i nā lāʻau lapaʻau e like me ke kuhikuhi a kāu kauka, e hana i nā hoʻoikaika kino, a pale nui iā ʻoe iho mai ka lā.
- Hiki i kēia maʻi ke hoʻonui i kou pilikia o ka maʻi kanesa, no laila e kamaʻilio me kāu kauka e pili ana i ia mea a me nā hoʻokolohua e pono ai.
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