Ua nāwaliwali kou ʻili a me nā ʻiʻo? E kamaʻilio kākou e pili ana i ka dermatomyositis!

Loaʻa iā ʻoe i kekahi manawa nā ʻōhū ʻili ʻē? Ke manaʻo nei hoʻi ʻoe he nāwaliwali iki kou mau ʻiʻo? Pono paha ʻoe e ʻike e pili ana i kahi maʻi i kapa ʻia ʻo dermatomyositis. He maʻi laha ʻole ia, akā he mea kūpono ke makaʻala.

He aha ka Dermatomyositis?

I ka ʻōlelo maʻalahi, ʻo ka dermatomyositis kahi maʻi kakaikahi e hoʻonāwaliwali i kou mau ʻiʻo a hoʻoulu i kahi ʻulaʻula e like me ka eczema . No kahi hui nui o nā maʻi i kapa ʻia ʻo myopathy. ʻO ia hoʻi, hoʻopilikia ia i nā ʻiʻo. I kekahi manawa, inā lilo ia i mea koʻikoʻi , hiki iā ia ke hoʻopilikia i ka hanu ʻana a me ka moni ʻana. E noʻonoʻo e pili ana iā ia, ʻo ko mākou mau ʻiʻo ka mea e hoʻoneʻe ai iā mākou, no laila pehea ka paʻakikī ke hōʻino ʻia lākou.

ʻO Dermatomyositis kahi ʻano o kahi maʻi ʻiʻo ʻē aʻe i kapa ʻia ʻo polymyositis. Eia nō naʻe, i kēia hihia, ma waho aʻe o nā ʻiʻo, ua hoʻopilikia pū ʻia ka ʻili. ʻO ia ke kumu i hoʻohui ʻia ai ka huaʻōlelo 'derma' (e pili ana i ka ʻili) i ka inoa.

Inā loaʻa iā ʻoe kekahi o kēia mau hōʻailona, ​​​​he mea nui e ʻike koke i ke kauka. I kekahi mau hihia, hiki i kēia mau hōʻailona ke hala i nā mahina e ʻike ʻia ai. Akā i kekahi manawa hiki iā lākou ke ʻike koke ʻia. Inā hoʻomaka mua ka mālama ʻana, hiki ke pale nui ʻia nā pilikia koʻikoʻi.

ʻOiai he mea kakaikahi loa, hiki i kēia ʻano maʻi, i kapa ʻia ʻo dermatomyositis, ke hoʻoweliweli i ke ola, ʻoiai i loko o ka makahiki mua ma hope o ka hoʻomaka ʻana o nā hōʻailona. Ua ʻike ʻia hoʻi e hoʻonui i ka pilikia o ka hoʻomohala ʻana i kekahi mau ʻano maʻi kanesa.

He aha ka ʻokoʻa ma waena o ka dermatomyositis a me ka lupus?

He ʻano like ka Dermatomyositis me ka lupus a me nā maʻi autoimmune ʻē aʻe. Eia nō naʻe, ʻaʻole maopopo i nā loea ke kumu o ka dermatomyositis. ʻO ia ke kumu i hoʻokaʻawale ʻole ʻia ai he ʻano autoimmune.

I kēia manawa, inā loaʻa iā ʻoe ka lupus, hiki iā ʻoe ke ʻike i ka ʻeha o nā hono, ka ʻili ʻeha a me ka eczema, a me nā pilikia me kou mau kino i loko (ʻo ia hoʻi kou lolo, māmā, puʻupaʻa, a me ka puʻuwai). Hiki i kāu mau hōʻailona ke hoʻāla pinepine a laila emi iho, a laila hoʻi mai i nā nalu - kapa mākou i kēia mau flare-ups.

Eia nō naʻe, ʻike ʻia ka dermatomyositis e ka nāwaliwali o nā ʻiʻo a me ka make ʻana o nā ʻiʻo , me ka ʻulaʻula o ka ʻili. Hoʻomaopopo ʻia ia ma o nā hoʻāʻo koko, nā biopsies, a me nā hoʻokolohua kiʻi like ʻole.

Inā he dermatomyositis a lupus paha, he mea nui e ʻike a mālama iā ia i ka wā hikiwawe loa. Inā ʻike ʻoe i kekahi mau hōʻailona hou, e ʻike koke i ke kauka.

ʻO wai ka mea i loaʻa pinepine i kēia maʻi? Pehea ka maʻamau?

Hiki i ka Dermatomyositis ke hoʻopilikia i kekahi, akā ʻoi aku ka nui o ka loaʻa ʻana o ia mea i kekahi mau hui. ʻO kēia mau mea:

• Nā keiki liʻiliʻi ma waena o nā makahiki 5 a me 15.
• Nā mākua ma waena o 40 a me 60 mau makahiki.
• Nā wāhine.

Pono hoʻi e hoʻomaopopo ʻia he mea laha ʻole kēia maʻi. Ma ka awelika, hoʻokahi wale nō i loko o 100,000 mau kānaka e loaʻa i kēia maʻi i kēlā me kēia makahiki. No laila hiki iā ʻoe ke ʻike i ka laha ʻole o kēia.

Pehea ka hopena o kēia maʻi i kou kino? Ka pilikia o ka maʻi ʻaʻai?

ʻO kahi maʻi i kapa ʻia ʻo dermatomyositis hiki ke hoʻopilikia i kou kino no ke koena o kou ola.

E noʻonoʻo, inā hōʻino nui kēia i kou mau ʻiʻo, ʻaʻole paha ʻoe e hiki ke hoʻohana a hoʻoneʻe paha i kahi ʻāpana o kou kino pono. He mau makahiki ka lōʻihi o ka ulu ʻana o kēia. Akā, hiki i kekahi poʻe ke loaʻa i ka nāwaliwali nui o nā ʻiʻo ma mua o nā poʻe ʻē aʻe.

ʻO kekahi mea ʻē aʻe, ua ʻike ʻia hoʻi ka dermatomyositis e hoʻonui i ka pilikia o ka hoʻomohala ʻana i kekahi mau ʻano maʻi kanesa .

ʻO ka Dermatomyositis a me ke kanesa

Ma kahi o 15% o ka poʻe me ka dermatomyositis e loaʻa i ka maʻi kanesa ma hope o ke ola. ʻO nā ʻano maʻamau o ka maʻi kanesa i ʻike ʻia i nā poʻe me ka dermatomyositis:

• Ka maʻi ʻōpū
• Ka maʻi ʻaʻai māmā
• ʻO ka maʻi ʻōpū
• Ka maʻi ʻaʻai umauma
• Ka maʻi ʻaʻai kolona

No laila, he mea nui loa e kamaʻilio me kāu kauka e pili ana i kou pilikia maʻi ʻaʻai a me nā hoʻokolohua āu e pono ai.

He aha nā hōʻailona o kēia maʻi?

ʻO nā hōʻailona nui ʻelua a me nā hōʻailona maʻamau o ka dermatomyositis ka nāwaliwali o nā ʻiʻo a me ka ʻulaʻula o ka ʻili.

Hiki i kekahi poʻe ke loaʻa i ka nāwaliwali o nā ʻiʻo a me ka ʻulaʻula o ka ʻili i ka manawa like. Eia nō naʻe, i kekahi manawa hiki ke loaʻa kekahi hōʻailona no nā pule, nā mahina, a i ʻole nā ​​makahiki me ka ʻole o kekahi.

Nāwaliwali o nā ʻiʻo

Hiki i ka nāwaliwali o nā ʻiʻo ke hoʻolilo iā ʻoe i mea paʻakikī ke hana i kekahi mau mea o kēlā me kēia lā. Eia kekahi laʻana:

• Noho pololei.
• Ke ala aʻe mai kahi noho (e like me ka noho a i ʻole ka sofa).
• Ke piʻi nei i nā alapiʻi.
• Ke ala ʻana mai ka moe ʻana ma luna o kahi moe.
• Ke holoi nei i kou lauoho.

E noʻonoʻo i kou manaʻo kōkua ʻole inā ʻaʻole hiki iā ʻoe ke hana i nā mea maʻalahi e like me kēia.

ʻEkika

Hiki i ka Dermatomyositis ke hoʻoulu i kahi ʻulaʻula ma kou ʻili (ʻoi aku hoʻi ma nā wahi i hōʻike ʻia i ka lā ). Hiki i ka ʻili ke loli ke kala a pehu. ʻO nā wahi maʻamau kahi e ʻike ʻia ai kēia ʻulaʻula:

• Nā makamaka a puni nā maka.
• ʻO ke alo o ka umauma a me nā poʻohiwi (i kekahi manawa i kapa ʻia ʻo 'V-sign rash').
• ʻO ke kua o ka ʻāʻī a me nā poʻohiwi (i kapa ʻia hoʻi ʻo 'shawl sign rash').
• Iwi poʻo.

Nā hōʻailona ʻē aʻe

Eia kekahi, hiki i ka dermatomyositis ke hana i nā hōʻailona e like me:

• ʻO ke ʻano ʻili ʻole a me nā puʻupuʻu ma nā lima, ʻoi aku hoʻi a puni nā puʻu lima (i kekahi manawa i kapa ʻia ʻo Gottron papules).
• Nā waihona kalipuna ma lalo o ka ʻili, i loko o nā ʻiʻo, a i ʻole i loko o nā ʻiʻo pili.
• Nā puʻu ma nā kuli a i ʻole nā ​​kuʻekuʻe lima.
• Ka māwae ʻili a puni ke kui a me nā kīʻaha koko i ʻike ʻia ma ka piko o ke kui.
• ʻEha hui.

Hoʻomohala kekahi poʻe (ʻoi aku hoʻi nā kamaliʻi ʻōpio) i ka dermatomyositis, ulu aʻe i ka wā makua, a ʻaʻole loa e loaʻa hou nā hōʻailona. Eia nō naʻe, ma kahi o 80% o nā hihia, lilo ia i mea maʻi - ʻo ia hoʻi e hoʻi hou mai ana i kēlā me kēia manawa - a hoʻoulu i nā hōʻailona i ke ola holoʻokoʻa.

He aha ke kumu o kēia?

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: Hōʻike kekahi mau noiʻi he maʻi hoʻoilina paha ka dermatomyositis, ʻo ia hoʻi, hiki ke hoʻoili ʻia i nā hanauna.
• Nā pilikia Autoimmune: E like me ka mea i ʻōlelo ʻia ma mua, ʻo ka dermatomyositis kahi maʻi e like me nā maʻi autoimmune he nui kahi e hoʻouka ai ka ʻōnaehana pale o ke kino i nā ʻiʻo olakino.
• Nā maʻi viral: Aia kekahi mau hōʻike e hiki i kekahi poʻe ke hoʻomohala i kahi maʻi viral, ʻoiai ma hope o kona hoʻoholo ʻana, hiki ke hoʻoulu i kahi maʻi i kapa ʻia ʻo dermatomyositis.
• Nā kumu o ke kaiapuni: Ua ʻike ʻia kekahi mau noiʻi ʻo ka poʻe e noho ana ma nā wahi me ke kiʻekiʻe o ka haumia a i ʻole ka maikaʻi ʻole o ka ea e ʻoi aku ka nui o ka loaʻa ʻana o ka dermatomyositis.

Pehea e ʻike ʻia ai kēia maʻi?

Hoʻomaopopo pinepine ʻia ka Dermatomyositis ma o nā hoʻāʻo koko a me nā laʻana liʻiliʻi i lawe ʻia mai kou ʻili a me nā ʻiʻo (biopsies) .

E ho'āʻo kāu kauka i kou koko e ʻike:

• Inā paha he piʻi aʻe nā pae o nā enzymes mākala kikoʻī e hōʻike ana i ka hōʻino ʻia ʻana o nā mākala.
• ʻO nā autoantibodies nā pūnaewele e hōʻike ana e pane ana ka ʻōnaehana pale i kahi mea i ʻike ʻia he mea ʻino.

Pono paha ʻoe e lawe ʻia kahi biopsy ʻili mai ka ʻōpala. Makemake paha kāu kauka e lawe i kahi biopsy ʻiʻo e nānā i ka pehu ʻana i loko o kou mau ʻiʻo.

Hiki paha iā ʻoe ke loaʻa i kekahi o nā hoʻokolohua kiʻi. ʻAe kēia mau hoʻokolohua i kāu kauka e nānā i kou mau ʻiʻo, nā aʻalolo, nā māmā, a me nā ʻōpū ʻē aʻe. Hiki i kēia mau hoʻokolohua ke kōkua i ka hoʻoholo ʻana inā paha ma muli o ka dermatomyositis a i ʻole kekahi pilikia ʻē aʻe kāu mau hōʻailona. ʻO nā hoʻokolohua kiʻi maʻamau i hoʻohana ʻia e ʻike i ka dermatomyositis:

• Kiʻi Hoʻohui Magnetika (MRI)
• X-ray umauma.

I kekahi mau hihia, hiki i kāu kauka ke kauoha i kahi hoʻokolohua i kapa ʻia ʻo electromyography (EMG). Ana kēia hoʻokolohua i ka hana uila e hana ʻia ke hoʻoulu ʻia nā ʻiʻo a i ʻole nā ​​​​aʻalolo.

Pehea e mālama ʻia ai?

Eia kekahi mau lāʻau lapaʻau i loaʻa no ka dermatomyositis:

• Corticosteroids: Hoʻemi kēia ʻano lāʻau lapaʻau i ka pehu ʻana i kou mau ʻiʻo.
• Hoʻōla kino: Hiki i ka hoʻōla kino (a me ka hoʻoikaika kino ma ke ʻano laulā) ke kōkua i ke kūkulu hou ʻana i ka pōʻino i hana ʻia e kou mau ʻiʻo. ʻO ka ikaika o kou mau ʻiʻo, ʻoi aku ka maikaʻi o ko lākou hiki ke kū i ka pōʻino i hana ʻia e ka dermatomyositis.
• Nā lāʻau lapaʻau immunosuppressant: Ke kāohi nei kēia mau lāʻau i kāu ʻōnaehana pale mai ka hoʻouka ʻana i nā ʻāpana olakino a me nā ʻiʻo. Hiki iā lākou ke hōʻemi i ka pōʻino o ka ʻōnaehana pale o kou kino i kou mau ʻiʻo.
• ʻO ka immunoglobulin intravenous (IVIg): ʻO IVIg kahi mea hoʻohui i kou plasma koko, ʻo ia kahi ʻāpana o ka immunoglobulin i loaʻa maoli i loko o kou koko. Hiki ke hāʻawi ʻia ka lāʻau IVIg me nā lāʻau immunosuppressive, a i ʻole he lāʻau ʻē aʻe.
• Hoʻōla ʻōlelo: Inā he nāwaliwali kou i nā ʻiʻo i loko a i ʻole a puni kou puʻu, hiki i ka hoʻōla ʻōlelo ke hoʻoikaika i nā ʻiʻo i loko o kou puʻu e kōkua iā ʻoe e ale i ka meaʻai.

ʻO ke ʻano o ka lāʻau lapaʻau āu e pono ai e pili ana i kahi o kou mau hōʻailona a me ke koʻikoʻi o lākou. E kamaʻilio me kāu kauka e pili ana i ka mea e manaʻo ai a me ka wā e pono ai kekahi mau lāʻau lapaʻau.

Pehea e mālama ai i nā hōʻailona?

ʻO ka mālama ʻana i nā hōʻailona o ka dermatomyositis he hana lōʻihi ia - malia paha kou ola holoʻokoʻa.

• Inā hāʻawi kāu kauka, mea hoʻoponopono kino, a mea hoʻoponopono ʻōlelo paha iā ʻoe i nā hoʻoikaika kino, e hana pololei iā lākou e like me ke kuhikuhi ʻana, no ka nui o nā manawa a lākou e haʻi aku ai iā ʻoe. E kōkua kēia i ka mālama ʻana i kou mau ʻiʻo i ka ikaika e like me ka hiki.
• E lawe i ka lāʻau lapaʻau e like me ke kauoha a ke kauka, no ka manawa holoʻokoʻa.
• E pale i ka ʻike ʻana i nā kukuna UV. E kaupalena i kou manawa i ka lā, e pale i ka hoʻohana ʻana i nā moena tanning i loko, a e noho i loko o ka hale a i ʻole ma ka malu i ka wā e noho ana ʻoe ma waho.
• I kēlā me kēia manawa āu e ʻike ai e puka ana ʻoeE hoʻohana i ka sunscreen. E hōʻoia i loaʻa i kāu sunscreen kahi SPF o ka liʻiliʻi he 50, a e hoʻopili hou i kēlā me kēia ʻelua hola.

Inā loaʻa iā ʻoe ka dermatomyositis, he mea nui e ʻike pinepine i kāu kauka. Hiki iā ia ke nānā i kāu mau hōʻailona a nānā i nā loli i kou mau ʻiʻo a i ʻole kou ʻili.

He aha kāu e manaʻo ai i ka wā e ola ai me kēia maʻi?

ʻAʻohe lāʻau ola mau loa no ka dermatomyositis, no laila hiki iā ʻoe ke manaʻo e hoʻokele i kāu mau hōʻailona no ke koena o kou ola.

ʻOiai me ka mālama ʻia ʻana, ma kahi o 80% o ka poʻe i loaʻa i ka dermatomyositis mau loa (i kekahi manawa i kapa ʻia ʻo polycyclic dermatomyositis). ʻO ke ʻano kēia e hele mai a hele aku paha kāu mau hōʻailona i kou ola a pau. E ʻike i ke kauka i ka wā e ʻike ai ʻoe i kekahi mau hōʻailona o ka ʻoi aʻe o nā hōʻailona.

Ma kahi o ʻelua hapakolu o ka poʻe me ka dermatomyositis e loaʻa i kekahi ʻano kīnā kino ma muli o ka hōʻino ʻia ʻana o nā ʻiʻo.

He mea make ka Dermatomyositis ma kahi o 5% o ka poʻe i ʻike ʻia me ka maʻi. Kiʻekiʻe loa kēia pilikia i loko o ka makahiki mua o ka hōʻoia ʻana. Eia nō naʻe, ma kahi o 20% o ka poʻe me ka dermatomyositis e hele i ka hoʻomaha lōʻihi. ʻO ia hoʻi, hiki iā lākou ke ola me ka ʻole o nā hōʻailona no ka manawa lōʻihi.

Hiki i kekahi mau hōʻailona a me nā kumu ʻē aʻe ke hoʻonui i ka pilikia o ka make. ʻO nā hiʻohiʻona:

• Inā hoʻopaneʻe ʻia ka lāʻau lapaʻau ma mua o ʻeono mahina.
• Inā ʻoe ma luna o 60 mau makahiki.
• Inā ʻike ʻoe i nā hōʻailona koʻikoʻi.
• Inā he mau hōʻailona kou ma kou puʻu, māmā, a puʻuwai paha.
• Inā loaʻa iā ʻoe ka maʻi kanesa a inā paha e ulu hou ana.

Āhea ʻoe e ʻike ai i ke kauka?

Inā ʻike ʻoe i ka nāwaliwali hou i kou mau ʻiʻo, ʻoiai inā he ʻulaʻula kou ʻili, e ʻike koke i ke kauka. ʻO ka wikiwiki o ka ʻike ʻia ʻana o ka dermatomyositis, ʻo ka wikiwiki o ka hoʻomaka ʻana i ka lāʻau. Hiki i kēia ke hōʻemi i ka pilikia o nā hōʻailona koʻikoʻi a me nā pilikia ʻē aʻe.

E nīnau pū i ka pinepine o kou ʻike ʻana i kāu kauka e nānā i kāu mau hōʻailona a me nā loli i kou mau ʻiʻo a i ʻole kou ʻili.

He aha nā nīnau āu e nīnau ai i kāu kauka?

He mea maʻamau ka loaʻa ʻana o nā nīnau i ka wā e aʻo ai e pili ana i kahi maʻi e like me kēia. Hiki iā ʻoe ke nīnau i kāu kauka i nā nīnau e like me:

• Loaʻa iaʻu ka dermatomyositis a i ʻole kekahi maʻi ʻē aʻe?
• He aha ke ʻano o nā hoʻokolohua e pono iaʻu e hana?
• He aha ke ʻano o ka lāʻau lapaʻau e pono ai iaʻu, a pehea ka lōʻihi?
• Pono anei au i ka nānā ʻana i ka maʻi kanesa?

He mea maʻamau ke makaʻu maoli i ka wā e lohe ai ʻoe he maʻi kou e like me dermatomyositis.He mea hoʻohoka ka ʻike ʻana e pili ana i kahi maʻi e ola a hiki ke make. Akā, e hana i hoʻokahi ʻanuʻu i ka manawa. ʻO ka wikiwiki o kou ʻike ʻia ʻana, ʻo ka wikiwiki o kou hoʻomaka ʻana i ka lāʻau.

E kamaʻilio me kāu kauka e pili ana i ka hoʻolālā ʻana i kāu huakaʻi lapaʻau a me ka hoʻokele ʻana i nā hōʻailona. E wehewehe ʻo ia i ka mea e manaʻo ai ma hope a me nā hoʻololi āu e pono ai e hana e hoʻomākaukau ai inā e ʻoi aʻe ka ʻino o kāu mau hōʻailona dermatomyositis.

Nā mea e hoʻomanaʻo ai i ka pōkole

He maʻi laha ʻole ka Dermatomyositis e hoʻoulu ai i ka nāwaliwali o nā ʻiʻo a me nā ʻulaʻula ʻili.

• Hiki ke ulu aʻe kēia i loko o kekahi, akā ʻoi aku ka maʻamau i nā keiki 5-15 makahiki, nā pākeke 40-60 makahiki, a me nā wahine.
• He mea nui loa ia e ʻimi i ke kōkua lapaʻau i ka wā e ʻike ai ʻoe i nā hōʻailona. Hiki i ka mālama koke ʻana ke hōʻemi i nā pilikia.
• ʻOiai ʻaʻohe lāʻau lapaʻau mau loa no kēia, hiki ke kaohi ʻia nā hōʻailona me ka mālama ʻana a me ka hoʻokele ʻana.
• E kamaʻilio pū me kāu kauka e pili ana i kou pilikia o ka maʻi kanesa.
• Mai hopohopo, ʻaʻole ʻoe hoʻokahi. Me ke kōkua o nā kauka a me nā poʻe aloha, hiki iā ʻoe ke hoʻoponopono i kēia kūlana.

ʻO ka Dermatomyositis, nāwaliwali o nā ʻiʻo, nā maʻi ʻili, nā ʻōhūhū, nā maʻi autoimmune, ka pilikia o ka maʻi kanesa, ka lāʻau lapaʻau kino