Ke manaʻo nei ʻoe i kekahi manawa ua luhi loa, ʻeha kou mau hono, a pehu kou mau manamana lima? I kekahi mau lā e loaʻa iā ʻoe kahi ʻulaʻula o ka ʻili, a i kekahi mau lā e manaʻo iki ʻoe i ka hanu ʻole. Hiki i kēia mau hōʻailona ke like me nā maʻi ʻē aʻe, no laila e noʻonoʻo paha ʻoe, "He aha ka pilikia iaʻu?" ʻAʻole paha ʻoe i maopopo inā he maʻi hoʻokahi kēia a i ʻole he hui pū ʻana o nā maʻi. I kēia lā e kamaʻilio mākou e pili ana i kahi kūlana e hoʻoulu ai i kekahi o kēia mau hōʻailona, he mea paʻakikī iki ia, akā he mea nui e makaʻala. Ua kapa ʻia kēia ʻo Mixed Connective Tissue Disease (MCTD).
I ka ʻōlelo maʻalahi, he aha ka MCTD?
He maʻi autoimmune kakaikahi ka MCTD. ʻAe, he aha ka maʻi autoimmune? I ka ʻōlelo maʻalahi, loaʻa iā mākou kahi ʻōnaehana pale i loko o ko mākou kino. Ua like ia me kahi pūʻali koa ma ko mākou ʻāina. ʻO kāna hana ka ʻike a hoʻouka i nā ʻenemi e like me nā germs, viruses, a me nā bacteria e komo i loko o ke kino a pale iā mākou mai nā maʻi. Akā i kekahi manawa, hele hewa kā mākou mau pale ponoʻī. Ma kahi o nā ʻenemi haole, kuhihewa lākou i ko mākou mau ʻiʻo olakino a me nā cell no nā "ʻenemi" a hoʻomaka e hoʻouka iā lākou. ʻO ia ka mea a mākou e kapa nei he maʻi autoimmune.
ʻO ka mea e hana ʻia ma MCTD, ʻo ia ka hui pū ʻana o nā hōʻailona o ʻekolu mau maʻi pili nui. ʻO ia ke kumu i kapa ʻia ai he "hui pū ʻia." ʻO nā maʻi ʻekolu:
- ʻO ka systemic lupus erythematosus (SLE): ʻO kēia ka maʻi a mākou e kapa pinepine ai ʻo "lupus" no ka pōkole.
- Scleroderma: ʻO ke ʻano nui o kēia ka mānoanoa a me ka paʻakikī o ka ʻili.
- Polymyositis: ʻO kēia ke kumu o ka nāwaliwali o nā ʻiʻo a me ka mumū.
Ma waho aʻe o kēia mau maʻi nui ʻekolu, hiki i kekahi poʻe ke ʻike i nā hōʻailona o nā maʻi pili ʻē aʻe, e like me dermatomyositis , rheumatoid arthritis , a i ʻole Sjögren's syndrome . ʻO ia ke kumu i kapa ai nā kauka i kēia ʻano he "Overlap Syndrome," a i ʻole kahi ʻano kahi e hui pū ai kekahi mau maʻi.
He aha nā hōʻailona o ka MCTD?
ʻO kekahi o nā pilikia nui me kēia, ʻaʻole ʻike ʻia nā hōʻailona i ka manawa hoʻokahi. Hiki iā lākou ke ʻike ʻia i ka hala ʻana o ka manawa, kekahi ma hope o kekahi. No laila, he mea paʻakikī iki ke ʻike iā ia he MCTD i nā pae mua. E nānā kākou i nā hōʻailona nui āu e ʻike ai.
| Hōʻailona | He wehewehe maʻalahi |
|---|---|
| Manaʻo luhi loa a me ke ola ʻole | Manaʻo luhi loa ʻoiai me ka hana ʻole ʻana i kekahi mea. Manaʻo e like me ka noho ʻana ma kahi moe i ka lā a pau. |
| kuni haʻahaʻa | ʻOiai inā ʻaʻole ʻoe i ke kuni kiʻekiʻe, manaʻo ʻoe e like me ka loaʻa ʻana o ka wela mai loko mai o kou kino, a ʻeha kou kino. |
| ʻEha hui a me nā ʻiʻo | ʻEha a pehu nā hono me ke kumu ʻole. Lilo nā ʻiʻo i nāwaliwali a ʻeha. |
| ʻO ka hanana o Raynaud | Ke hoʻokuʻu ʻia i ke anu (e.g. i loko o ka lumi ea hoʻoluʻu, ka lawe ʻana i kahi mea mai loko mai o ka pahu hau), e emi ana ke kahe ʻana o ke koko i nā manamana lima, nā manamana wāwae, ka ihu, a me nā pepeiao, e hoʻomāʻeleʻele ai iā lākou, make ke ola, a laila lilo i polū/poni. Ke hoʻomehana hou ʻia, lilo lākou i ʻulaʻula a hoʻi i ka maʻamau. |
| Manamana lima pupuhi | Ua like nā manamana lima me nā sausage a pehu. I kekahi manawa e nalowale ana kēia ma hope o kekahi mau lā. Eia nō naʻe, i kekahi poʻe, i ka hala ʻana o ka manawa, lilo ka ʻili ma nā manamana lima i ʻoʻoleʻa, lahilahi, a paʻakikī ke kulou (sclerodactyly). |
| Nā ʻōhū ʻili | Hiki ke ʻike ʻia nā kiko a i ʻole nā palapala ʻulaʻula a ʻulaʻula paha, ʻoi aku hoʻi ma nā puʻupuʻu lima. |
Pehea ka manaʻo o ka MCTD i ka wā o ka flare up?
ʻAʻole like mau ka manaʻo o ke kanaka me MCTD. I kekahi manawa e emi iho nā hōʻailona a maʻamau. Akā i kekahi manawa e ʻoi koke ka ʻino o ka maʻi. Kāhea mākou i kēia he 'flare-up'. I loko o kēia mau manawa, ʻoi aku ka ʻino o kāu mau hōʻailona.
- Hiki ke loaʻa ka ʻeha nui a me ka pehu ʻana i nā hono. E like me kekahi me ka rheumatoid arthritis, hiki i nā hono ke paʻakikī a ʻeha loa a hiki ʻole iā lākou ke kulou i ko lākou mau manamana lima i ke kakahiaka.
- Hiki i ka maʻi ʻo Raynaud ke koʻikoʻi loa. ʻOiai he anu iki wale nō ke kumu e mae koke ai nā manamana lima, make ke ola, a ʻeleʻele ke kala.
- E luhi loa paha ʻoe, me he mea lā ua loaʻa iā ʻoe ke kuni no nā lā, me nā ʻehaʻeha o nā ʻiʻo a me ka manaʻo ua nāwaliwali loa ʻoe e hana i kekahi mea.
He aha ke kumu o ka MCTD? ʻO wai ka mea i pilikia nui?
ʻO kaʻoiaʻiʻo, ʻaʻole i loaʻa i nā kānaka noiʻi ke kumu pololei o ka MCTD. ʻAʻole ia he maʻi i hoʻoili pololei ʻia mai nā mākua a i nā keiki, ʻo ia hoʻi he maʻi hoʻoilina. Eia nō naʻe, ua ʻike ʻia inā loaʻa i kekahi o ka ʻohana kekahi maʻi pili, hiki i kekahi ke loaʻa iki i kēia maʻi.
Ma waho aʻe o kēlā, ke manaʻo nei au aia kekahi mau kumu o waho e hoʻopilikia nei i kēia.
- ʻO kekahi mau maʻi viral .
- Ka ʻike ʻia ʻana i kekahi mau kemika , e like me ka polyvinyl chloride a me ka silica.
ʻOiai hiki ke loaʻa kēia maʻi i kēlā me kēia makahiki, ʻike pinepine ʻia ia i nā wahine ma waena o 20 a me 30 mau makahiki .
He aha nā pilikia e hiki ke hana ma muli o ka MCTD?
ʻAʻole wale ka MCTD he maʻi hono. Inā ʻaʻole mālama ʻia, hiki iā ia ke hōʻino i nā ʻōpū koʻikoʻi a hoʻoulu i nā pilikia koʻikoʻi. No laila, he mea nui loa ka makaʻala i kēia.
E hoʻomanaʻo, ʻaʻole e loaʻa kēia mau pilikia a pau i kēlā me kēia maʻi, akā he mea nui e ʻike i nā pilikia.
ʻO nā pilikia nui e hiki ke hana:
- ʻO ke koko kiʻekiʻe o ka puʻuwai: ʻO kēia ka pilikia weliweli loa o ka MCTD. I ka ʻōlelo maʻalahi, he piʻi ʻana o ke kaomi i loko o nā kīʻaha koko e lawe ana i ke koko mai ka puʻuwai a i nā māmā. Hoʻokau kēia i ka nui o ke kaumaha ma ka puʻuwai a hiki ke alakaʻi i nā kūlana koʻikoʻi e like me ka hāʻule ʻana o ka puʻuwai. ʻO kēia kūlana ke kumu nui o ka make i nā poʻe maʻi MCTD.
- ʻO ka maʻi māmā interstitial: Ka mumū a me ka ʻeha o ka ʻiʻo māmā, hiki ke hoʻopilikia i ka hanu ʻana.
- 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 pololei ai nā kauka i kēia maʻi?
E like me kā mākou i kūkākūkā ai ma mua, hiki i nā hōʻailona o MCTD ke ʻike ʻia kekahi ma hope o kekahi i ka hala ʻana o ka manawa, e paʻakikī ai i nā kauka ke ʻike. Hiki ke hala nā makahiki e hōʻoia ai he MCTD ia. Aia kekahi kauka loea i kēia mau kūlana, i kapa ʻia he rheumatologist . Inā loaʻa iā ʻoe kēia mau hōʻailona, e kuhikuhi paha kāu kauka iā ʻoe i kekahi o kēia mau loea.
ʻEhā mau hiʻohiʻona nui e kōkua i ka hoʻokaʻawale ʻana i ka MCTD mai nā maʻi pili ʻē aʻe:
1. Nā pae kiʻekiʻe o kahi antibody i kapa ʻia ʻo anti-U1-RNP i loko o ke koko: Hiki ke ʻike ʻia kēia me kahi hoʻāʻo koko kūikawā. He mea kūikawā kēia antibody i nā poʻe maʻi MCTD.
2. ʻAʻohe pilikia koʻikoʻi o nā puʻupaʻa a me nā pilikia kikowaena o ke kino: He mea maʻamau kēia mau pilikia i ka lupus (SLE). Eia nō naʻe, he mea kakaikahi lākou i ka MCTD.
3. Ke kū ʻana o ka maʻi ʻāʻī koʻikoʻi a me ke koko kiʻekiʻe pulmonary: ʻOi aku ka maʻamau o kēia mau hōʻailona ma ka MCTD ma mua o ka lupus a i ʻole scleroderma wale nō.
4. ʻO ka hanana Raynaud a me ka pehu ʻana o nā manamana lima: ʻOiai he 25% wale nō o nā maʻi lupus i loaʻa kēia mau hōʻailona, he mea maʻamau loa ia i waena o nā maʻi MCTD.
He aha nā lāʻau lapaʻau no MCTD?
ʻO ka mea mua, ʻaʻohe lāʻau lapaʻau no MCTD. Akā, mai hopohopo. Nui nā lāʻau lapaʻau kūpono e hiki ke kōkua iā ʻoe e hoʻokele i kāu mau hōʻailona, pale i nā pilikia, a ola i kahi ola maʻamau. Aia ka lāʻau lapaʻau i ke ʻano o kāu mau hōʻailona, ke koʻikoʻi o kou kūlana, a me nā ʻōpū i hoʻopilikia ʻia.
| ʻAno lāʻau lapaʻau | Hana a me ka hoʻohana |
|---|---|
| Nā Corticosteroids Laʻana: prednisone | Hana kēia mau mea ma ka hōʻemi ʻana i ka mumū i loko o ke kino a me ka kaohi ʻana i ka hana hewa o ka ʻōnaehana pale. Hiki ke hāʻawi ʻia iā lākou ma nā dosis haʻahaʻa inā ʻaʻole koʻikoʻi ka maʻi, a ma nā dosis kiʻekiʻe inā koʻikoʻi. |
| Nā lāʻau antimalarial Eia kekahi laʻana: hydroxychloroquine | Kōkua kēia i ka pale ʻana i nā hoʻouka kaua a kaohi i nā hōʻailona maʻalahi. |
| Nā mea pale i ke kahawai kalipuna | Kōkua kēia i ka kaohi ʻana i ka hanana ʻo Raynaud ma ka hoʻomaha ʻana i nā ʻiʻo i loko o nā paia o nā kīʻaha koko, e ʻae ana i ke koko e kahe maʻalahi. |
| Nā immunosuppressants ʻē aʻe | Inā ua hōʻino ʻia nā ʻōpū nui e like me nā māmā a me nā puʻupaʻa, pono paha e hāʻawi i nā lāʻau lapaʻau ikaika e like me kēia e kaohi hou aku i ka hana o ka ʻōnaehana pale kino. |
| Nā lāʻau lapaʻau antihypertensive | He mea nui kēia mau mea no ka mālama ʻana i ka hypertension pulmonary. |
Pehea ʻoe e mālama ai iā ʻoe iho?
Ma waho aʻe o ka lawe ʻana i ka lāʻau lapaʻau a kāu kauka i kuhikuhi ai, ʻo ka hana ʻana i nā hoʻololi liʻiliʻi i kou nohona e hiki ai ke maʻalahi ka noho ʻana me kēia maʻi.
- Ka hoʻohana ʻana i nā lāʻau ʻeha: No ka ʻeha iki a me ka mumū, hiki iā ʻoe ke kamaʻilio me kāu kauka e pili ana i ka lawe ʻana i nā lāʻau anti-inflammatory non-steroidal (NSAID) - e like me ka ibuprofen - no ka laʻana. Akā, mai hoʻohana mau i kēia mau mea me ka ʻole o ke kūkākūkā ʻana me ke kauka .
- E pale i kou mau lima mai ke anu: He mea nui loa kēia inā loaʻa iā ʻoe ka maʻi ʻo Raynaud. E ʻaʻahu i nā mīkina lima i nā lā anuanu. E hoʻomehana i kou mau lima i ka wā e noho ai i loko o nā lumi ea. E makaʻala i ka lawe ʻana i nā mea mai loko mai o ka friji.
- E pale loa i ka puhipaka: ʻO ka puhipaka ke kumu o ka hoʻopaʻa hou ʻana o nā kīʻaha koko, kahi e hiki ai ke hoʻonui i ka maʻi ʻo Raynaud.
- E hōʻemi i ke kaumaha: ʻO ke kaumaha kekahi kumu nui o Raynaud's. No laila e ho'āʻo e hōʻoluʻolu i kou manaʻo ma ka hana ʻana i nā mea e like me nā hoʻomaʻamaʻa hanu a me ka noʻonoʻo ʻana. Inā pono, he manaʻo maikaʻi nō hoʻi e ʻimi i ke kōkua o kahi kākā'ōlelo olakino noʻonoʻo.
Ke noho nei me MCTD no ka manawa lōʻihi
ʻOiai he maʻi lōʻihi ka MCTD, he mea nui e aʻo e noho me ia. ʻOiai ke lawe nei i nā lāʻau lapaʻau e like me corticosteroids no ka manawa lōʻihi, hiki ke loaʻa kekahi mau hopena ʻaoʻao.
- Ka nāwaliwali o nā iwi ma muli o ka osteoporosis.
- ʻO ka make ʻana o nā ʻiʻo ma muli o ka emi ʻana o ke kahe koko i nā ʻiʻo.
- Ka nāwaliwali o nā ʻiʻo.
- Maʻalahi i nā maʻi.
Pono ʻoe e kipa aku i kāu kauka i ka manawa i hoʻonohonoho ʻia e mālama a nānā i kēia mau hopena ʻaoʻao. E hahai pono i nā kuhikuhi a ke kauka.
Inā e hoʻolālā ana kahi wahine me MCTD e hānau i kahi pēpē, he mea nui e kamaʻilio mua me kāna kauka . Hiki ke ʻoi aku ka ʻino o ke kūlana i ka wā hāpai. Eia kekahi, ʻo nā pēpē i hānau ʻia e nā makuahine me MCTD he haʻahaʻa paha ke kaumaha hānau.
Āhea wau e ʻike ai i ke kauka?
Inā loaʻa iā ʻoe kekahi o nā hōʻailona i ʻōlelo ʻia ma kēia ʻatikala, ʻoiai inā ke hoʻopilikia nei lākou i kāu mau hana o kēlā me kēia lā, pono ʻoe e ʻike i ke kauka. Inā loaʻa iā ʻoe kekahi ʻeha hui a ʻeha paha, pehu i kou mau manamana lima, a i ʻole nā hōʻailona o ka 'Raynaud's phenomenon', e ʻimi i ke aʻo lapaʻau.
Ke hele ʻoe e ʻike i ke kauka, hiki iā ʻoe ke nīnau i kēia mau nīnau:
- He aha ke kumu o koʻu mau hōʻailona?
- He ʻoi aku koʻu ma mua o hoʻokahi maʻi pili?
- He aha ke ʻano o nā hoʻokolohua e pono iaʻu e hana?
- He aha nā lāʻau lapaʻau no koʻu maʻi?
- He aha kaʻu e hana ai e pale aku i ka maʻi mai ka ʻino ʻana?
Ke noho nei me kēia maʻi, e noʻonoʻo paha ʻoe pehea lā kou ola i loko o 10 mau makahiki. Hōʻike ka ʻikepili me ka mālama pono ʻana, hiki i kahi 80% o nā maʻi ke ola ma ka liʻiliʻi he 10 mau makahiki ma hope o ka hōʻoia ʻana. Akā ʻo kāu kauka ponoʻī wale nō ke hāʻawi iā ʻoe i ka ʻike maikaʻi loa a pololei loa e pili ana i kēia. No ka mea, hilinaʻi ia i nā mea he nui, e like me ke ʻano o kou maʻi a me nā ʻōpū i hoʻopilikia ʻia.
Leka Lawe-Home
- He maʻi autoimmune paʻakikī ka MCTD e hoʻohui i nā hōʻailona o kekahi mau maʻi ʻē aʻe, e like me lupus, scleroderma, a me polymyositis.
- Hiki ke ʻike ʻia nā hōʻailona like ʻole e pili ʻole ana, e like me ka ʻeha o nā hono, ka luhi nui, ka pehu ʻana o nā manamana lima, a me ke kala ʻana o nā manamana lima i ke anuanu (ʻo Raynaud's).
- ʻOiai ʻaʻole hiki ke ho'ōla loa ʻia kēia maʻi, aia nā lāʻau lapaʻau kūpono e hiki ke kaohi i nā hōʻailona, pale i nā pilikia, a hiki iā ʻoe ke ola i kahi ola maʻamau.
- He mea nui e ʻimi i ke kōkua o kahi loea, e like me ke kauka rheumatologist, no ka ʻike ʻana a me ka mālama ʻana.
- ʻO ke kipa ʻana i ke kauka i ka manawa kūpono, ka pale ʻana i ka puhipaka, ka pale ʻana iā ʻoe iho mai ke anu, a me ka kaohi ʻana i ke kaumaha he mau mea nui ia no ka mālama ʻana i nā maʻi.
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