Ke luhi loa nei ʻoe i kekahi manawa? I ka manawa like, ua ʻike anei ʻoe i nā hōʻailona ʻē e like me ka ʻeha o nā hono, nā manamana lima pehu, a i kekahi manawa e mae a uliuli kou mau manamana lima ke hōʻike ʻia i ke anu? Ke hopohopo nei hoʻi ʻoe i nā hōʻailona o kēia mau maʻi e ʻike ʻia ana i ka manawa hoʻokahi? A laila he ʻano laha ʻole paha kēia i kapa ʻia ʻo Mixed Connective Tissue Disease, a i ʻole MCTD e like me kā mākou e kapa nei no ka pōkole. Mai hopohopo, e kamaʻilio maʻalahi kākou e pili ana i kēia.
He aha maoli ka MCTD?
I ka ʻōlelo maʻalahi, he maʻi autoimmune ka MCTD. E noʻonoʻo i kēia ʻano: aia ka ʻōnaehana pale o ko mākou kino, ʻo ia hoʻi ka ʻōnaehana pale, e pale iā mākou mai nā maʻi. Akā, i loko o kēia ʻano maʻi, manaʻo hewa ko mākou ʻōnaehana pale ponoʻī he ʻenemi ko mākou mau ʻiʻo olakino ponoʻī a hoʻomaka e hoʻouka iā lākou.
ʻO ke ʻano kūikawā o MCTD, ʻaʻole ia he maʻi hoʻokahi, akā, he hui pū ʻana o nā hōʻailona o ʻekolu mau maʻi pili nui ʻē aʻe. ʻO ia ke kumu i kapa ʻia ai ʻo "Mixed". Ua kapa ʻia hoʻi ʻo "overlap syndrome". ʻO nā maʻi ʻekolu:
- ʻO ka systemic lupus erythematosus (SLE): Kapa pinepine mākou i kēia ʻo 'lupus'.
- Scleroderma: ʻO kēia ke kumu e mānoanoa a paʻakikī ai ka ʻili.
- Polymyositis: ʻO kēia ke kumu o ka nāwaliwali o nā ʻiʻo a me ka pehu ʻana.
Hiki i kekahi poʻe ke hōʻike i nā hōʻailona o nā kūlana e like me dermatomyositis, rheumatoid arthritis, a i ʻole Sjögren's syndrome ma waho aʻe o kēia mau hōʻailona.
He aha nā hōʻailona o ka MCTD?
ʻAʻole pinepine kēia mau hōʻailona a pau e ʻike ʻia i ka manawa hoʻokahi. Hōʻike pinepine lākou kekahi ma hope o kekahi i ka hala ʻana o ka manawa. No laila, hiki ke paʻakikī ke ʻike mua i ka MCTD.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Manaʻo luhi a make ke ola | Ke luhi mau nei me ke kumu ʻole. Manaʻo me he mea lā ua make kou kino. |
| Wela o ke kino (kuni) | ʻAʻole ia he kuni nui, he wela iki wale nō o ke kino e mau ana. |
| ʻEha ʻiʻo a me nā hono | ʻEhaʻeha a me ka nāwaliwali o nā ʻiʻo, a me nā hono pehu a ʻoʻoleʻa me ka ʻeha. |
| ʻO ka hanana o Raynaud | He hōʻailona maʻamau kēia no nā kānaka he nui. Ke hoʻopilikia ʻia e ke anu a i ʻole ke kaumaha, emi ke kahe o ke koko i nā lima, nā wāwae, ka ihu, a me nā pepeiao, e lilo koke ai lākou i ke keʻokeʻo, a laila polū. A laila lilo hou lākou i ʻulaʻula a hoʻi i ka maʻamau. Hiki iā ʻoe ke manaʻo i ka mae a i ʻole ka ʻeha i loko o kēia manawa. |
| Ka pehu ʻana o nā manamana lima | Pehu a unahi nā manamana lima. I kekahi manawa e nalowale ana kēia ma hope o kekahi mau lā, akā i ka hala ʻana o ka manawa, hiki i kekahi poʻe ke hoʻopāʻakāka i ka ʻili e paʻakikī ai ke kulou i ko lākou mau manamana lima (sclerodactyly). |
| Nā kiko ʻili | Nā kiko a i ʻole nā hōʻeha ʻulaʻula a ʻulaʻula-ʻeleʻele paha ma nā puʻupuʻu lima. |
Pehea ka manaʻo o ka MCTD ke lapalapa?
Hiki i nā kānaka me kēia maʻi ke loaʻa i kekahi manawa nā hōʻailona koʻikoʻi loa . Kāhea mākou i kēia he 'flare-up'. I loko o kēia manawa, hiki i ka ʻeha o nā hono a me nā ʻehaʻeha ke lilo i mea hiki ʻole ke hoʻomanawanui. E like me kekahi me ka 'Rheumatoid arthritis', hiki i nā hono ke pehu, ʻoʻoleʻa, a ʻeha. Hiki i ka 'Raynaud's phenomenon' ke hana pinepine a ʻoi aku ka koʻikoʻi.
He aha ke kumu o ka MCTD?
ʻAʻole i loaʻa ke kumu kikoʻī o kēia maʻi. ʻAʻole ia he maʻi i hoʻoilina pololei ʻia. Eia nō naʻe, ua ʻike ʻia e ka noiʻi inā loaʻa i kekahi o ka ʻohana nā maʻi pili i nā ʻiʻo, aia kekahi i kahi pilikia o ka loaʻa ʻana. Eia kekahi, ua manaʻo ʻia he hiki i kekahi mau virus, ka ʻike ʻana i nā kemika e like me ka 'polyvinyl chloride' a me ka 'silica' ke kumu o kēia.
ʻO wai ka mea i pilikia nui i ka loaʻa ʻana o kēia maʻi?
ʻO ka MCTD ka mea maʻamau i nā wahine ma waena o nā makahiki 20-40.Ma waena. Akā, ʻaʻole ia manaʻo ʻaʻole hiki i nā kāne a i ʻole nā kānaka o nā makahiki ʻē aʻe ke loaʻa. Hiki i kekahi, i kēlā me kēia makahiki, ke loaʻa i kēia maʻi.
He aha nā pilikia e hiki ke loaʻa mai ka MCTD?
He maʻi ka MCTD i hiki ke hoʻoulu i nā pilikia koʻikoʻi i kekahi manawa, no laila he mea nui loa ka mālama ʻana i ka maʻi.
E hoʻomanaʻo, ʻaʻole e loaʻa i nā kānaka a pau kēia mau pilikia āpau. Hiki ke pale ʻia ka nui o kēia mau mea me ka mālama kūpono.
Eia kekahi o nā pilikia nui:
- ʻO ke koko kiʻekiʻe o ka puʻuwai: ʻO kēia ke kumu nui o ka make ma waena o nā poʻe maʻi MCTD. Hana ʻia ia i ka wā e piʻi ai ke kaomi i loko o nā kīʻaha koko e lawe ana i ke koko i nā māmā.
- Ka maʻi o ka māmā interstitial: Ka mumū a me ka ʻeha o nā ʻiʻo o nā māmā.
- Maʻi puʻuwai
- Ka pōʻino o nā puʻupaʻa
- Ka pōʻino o ke ala ʻai
- Anemia
- Make ʻana o nā ʻiʻo (necrosis)
- Poho lohe
Pehea e ʻike ai ke kauka i ka MCTD?
E like me kā mākou i ʻōlelo ai ma mua, hiki ke paʻakikī ke ʻike i nā hōʻailona o kēia maʻi no ka mea e ʻike mālie ʻia ana i ka hala ʻana o ka manawa. Hiki ke hala nā makahiki e hoʻoholo ai inā he MCTD ia. Inā loaʻa iā ʻoe kēia mau hōʻailona, e kuhikuhi ʻia paha ʻoe i kahi kauka loea i nā maʻi hono a me nā maʻi autoimmune, i kapa ʻia he rheumatologist .
Ke nānā nei ke kauka i ʻehā mau mea nui e kānalua ai i ka MCTD:
1. Nā pae kiʻekiʻe o nā antibodies anti-U1-RNP i loko o ke koko: ʻO kēia ka hoʻāʻo nui no ka ʻike ʻana i ka MCTD.
2. ʻAʻohe pilikia koʻikoʻi o nā puʻupaʻa a i ʻole ka ʻōnaehana nerve waena: Hiki i kēia mau pilikia ke koʻikoʻi i nā poʻe maʻi lupus (SLE).
3. Ke alo ʻana o ka maʻi ʻāʻī koʻikoʻi a me ke koko kiʻekiʻe o ka pulmonary: ʻAʻole ʻike pinepine ʻia kēia mau mea i ka lupus a i ʻole scleroderma.
4. ʻO ka hanana Raynaud a me ka pehu ʻana o nā manamana lima: ʻIke ʻia kēia mau hōʻailona i 25% wale nō o nā maʻi lupus.
He aha nā lāʻau lapaʻau no MCTD?
ʻAʻohe lāʻau lapaʻau no MCTD i kēia manawa. Akā, he nui nā lāʻau lapaʻau kūpono e hiki ke kōkua iā ʻoe e kāohi i kāu mau hōʻailona, pale i nā pilikia, a ola i kahi ola maʻamau. Aia ka lāʻau lapaʻau i nā mea e like me ke koʻikoʻi o kāu mau hōʻailona a me nā ʻōpū i hoʻopilikia ʻia.
| ʻAno lāʻau lapaʻau | Kumu o ka hoʻohana ʻana |
|---|---|
| Nā Corticosteroids | Laʻana: Prednisone. Hoʻēmi i ka mumū i loko o ke kino a kāohi i ka hana o ka ʻōnaehana pale. |
| Nā lāʻau antimalarial | E.g. Hydroxychloroquine. Kāohi i nā hoʻāla ʻana a kāohi i nā hōʻailona liʻiliʻi. |
| Nā mea pale i ke kahawai kalipuna | E kāohi i ka hanana ʻo Raynaud. Hoʻomaha kēia i nā ʻiʻo i loko o nā paia o ke kīʻaha koko. |
| Nā immunosuppressants ʻē aʻe | Inā pilikia nā ʻōpū nui (e like me nā māmā, ka puʻuwai), e kaohi pono i ka ʻōnaehana pale. |
| Nā lāʻau lapaʻau antihypertensive | E kāohi i ke koko kiʻekiʻe o ka pulmonary. |
He aha nā mea hiki iā ʻoe ke hana e mālama iā ʻoe iho?
Ma waho aʻe o ka lawe ʻana i ka lāʻau lapaʻau, hiki i ka hana ʻana i nā hoʻololi liʻiliʻi i kou nohona ke kōkua nui i ka kaohi ʻana i kēia mau hōʻailona.
- Ka hoʻohana ʻana i nā mea ʻeha: No ka ʻeha iki a me ka pehu, hiki iā ʻoe ke lawe i nā lāʻau anti-inflammatory non-steroidal (NSAID) e like me Ibuprofen, ma hope o ke kūkākūkā ʻana me kāu kauka .
- Ke pale ʻana iā ʻoe iho mai ke anu: He mea nui kēia e pale aku ai i ka hanana ʻo Raynaud. E komo i nā mīkina lima a me nā pale pepeiao i ka wā e hele ai i waho i ke anuanu. E hōʻemi i ka pili ʻana me ka wai anuanu a me ka hoʻomaʻalili nui ʻana.
- Ke pale ʻana i ka puhipaka:Hoʻopaʻa ka puhipaka i nā kīʻaha koko. Hiki i kēia ke hoʻonui i ka maʻi o Raynaud. No laila, inā ʻoe e puhipaka, he mea nui loa ia e haʻalele.
- E hōʻemi i ke kaumaha: Hiki i ke kaumaha ke hoʻoulu i ka hanana ʻo Raynaud. No laila e ho'āʻo e hōʻoluʻolu i kou manaʻo ma o nā mea e like me nā hoʻomaʻamaʻa hanu a me ka noʻonoʻo ʻana. E ʻimi i ke kōkua o kahi kākā'ōlelo olakino noʻonoʻo inā pono.
Āhea ʻoe e pono ai e ʻike i ke kauka?
Inā loaʻa iā ʻoe kekahi o nā hōʻailona a mākou i kūkākūkā ai ma mua, ʻoiai inā ke hoʻopilikia nei lākou i kāu mau hana o kēlā me kēia lā, he manaʻo maikaʻi e ʻike i ke kauka. Inā loaʻa iā ʻoe ka ʻeha ʻiʻo a i ʻole ka ʻeha hui hou, ka pehu ʻana i kou mau manamana lima, a i ʻole nā hōʻailona o Raynaud's, ʻoi aku ka maikaʻi e ʻike i ke kauka e nānā iā lākou.
ʻO kekahi mau nīnau hiki iā ʻoe ke nīnau i ke kauka:
* He aha ke kumu o koʻu mau hōʻailona?
* Loaʻa iaʻu ma mua o hoʻokahi maʻi pili?
* He aha nā hoʻokolohua e pono ai iaʻu e hana?
* He aha nā lāʻau lapaʻau no kēia maʻi?
* He aha kaʻu e hana ai e pale aku i nā ʻōhūhū?
Hiki ke paʻakikī ke ola me kēia maʻi i kekahi manawa. Akā me ka mālama kūpono a me ke ʻano o ka nohona, hiki iā ʻoe ke ola maikaʻi. E hoʻomau i ka launa pū me kāu kauka a kamaʻilio ākea e pili ana i kou mau hopohopo.
Leka Lawe-Home
- He maʻi paʻakikī a laha ʻole ka MCTD e hoʻoulu ai i nā hōʻailona o kekahi mau maʻi e hui pū.
- Ma muli o ka ʻike ʻia ʻana o nā ʻōuli kekahi ma hope o kekahi, hiki ke lōʻihi ka manawa e ʻike pono ai i ka maʻi.
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia kēia maʻi, hiki ke kaohi i nā hōʻailona, pale i nā pilikia, a ola i kahi ola maʻamau.
- ʻO ka pale ʻana iā ʻoe iho mai ke anu, ka pale ʻana i ka puhipaka, a me ka mālama ʻana i ke kaumaha e hele lōʻihi i ka hōʻemi ʻana i nā hōʻailona.
- E kamaʻilio mau me kāu kauka e pili ana i kou kūlana a e hoʻomau me nā hoʻokolohua a me nā lāʻau lapaʻau kūpono. ʻAʻole ʻoe hoʻokahi!











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