Ua ʻike anei ʻoe, a i ʻike paha, i ka pehu koke ʻana o kekahi ʻaoʻao o kou maka, ka lehelehe pehu, ka ʻūlū ʻana ma kekahi ʻaoʻao o kou maka, a i ʻole kahi māwae ʻē i kou alelo? ʻAʻole paha kēia he mea maʻamau. He mau hōʻailona paha ia o kahi maʻi laha ʻole a mākou e kamaʻilio nei.
He aha ka Melkersson-Rosenthal Syndrome?
ʻAe, e nānā kākou i ke ʻano o ka Melkersson-Rosenthal Syndrome, a i ʻole MRS no ka pōkole. I ka pōkole, he maʻi neurological kakaʻikahi loa ia. ʻO ia hoʻi, hoʻopilikia nui ia i ka ʻōnaehana nerve i ko kākou maka. ʻO nā hōʻailona nui o kēia maʻi, ʻo ia ka pehu ʻana o ka maka, nā māwae ʻē i ke alelo (e like me nā ʻauwai hohonu), a me ka maʻi lolo o ka maka, ʻo ia ka nalowale o ka hana ma kekahi a i ʻole nā ʻaoʻao ʻelua o ka maka. E noʻonoʻo, i ka manawa koke, ua huki ʻia ke kihi o ka waha i lalo a ʻaʻole hiki iā ʻoe ke pani pono i kou mau maka.
Hiki i kēia maʻi `MRS` ke lilo i hōʻailona o kahi maʻi e hiki mai ana, e like me ka maʻi Crohn (kahi maʻi mumū mau o nā ʻōpū) a i ʻole sarcoidosis (kahi maʻi e hoʻoulu ai i nā puʻupuʻu liʻiliʻi a pehu i nā ʻāpana like ʻole o ke kino). I kekahi manawa kapa nā kauka i kēia maʻi he ``Orofacial Granulomatosis`` . He maʻi ia e hoʻoulu ai i nā puʻupuʻu liʻiliʻi a puʻupuʻu i kapa ʻia he granulomas, i hele pū ʻia me ka pehu a puni ka maka a me ka waha.
ʻO wai ka mea hiki ke loaʻa i kēia maʻi `MRS`? Pehea ka maʻamau?
I kēia manawa ke noʻonoʻo nei paha ʻoe, "ʻO wai ka mea hiki ke loaʻa i kēia?" ʻOiaʻiʻo, hiki ke ulu kēia maʻi i kapa ʻia ʻo `MRS` i kēlā me kēia makahiki. Eia nō naʻe, ʻoi aku ka maʻamau i nā poʻe ʻōpio, maʻamau i ko lākou mau makahiki he 20 mua, i ka wā e hoʻomaka ai nā hōʻailona e ʻike ʻia.
Akā i ka wā e pili ana i ke ʻano maʻamau o ia mea, he maʻi laha ʻole ka MRS. Ua ʻōlelo ʻia e hoʻopilikia ia i kahi pakeneka liʻiliʻi loa o ka heluna kanaka, ma kahi o 0.08%. Akā manaʻoʻiʻo nā kānaka ʻepekema no ka mea ua like nā hōʻailona me nā maʻi ʻē aʻe, nui paha ka poʻe i ʻike ʻole ʻia. ʻO ke ʻano kēia he nui paha ka poʻe e ʻeha nei i kēia maʻi ma mua o kēia helu. No laila, inā loaʻa iā ʻoe nā hōʻailona e like me kēia, mai haʻalele i ka noʻonoʻo ʻana, "He kakaikahi wale nō ka poʻe e hana nei i kēia, ʻaʻohe ala e loaʻa ai iaʻu." ʻO ka mea nui loa, ʻo ia ke ʻimi i ka ʻōlelo aʻo lapaʻau.
He aha nā kumu o ka 'MRS'?
ʻAe, e nānā kākou i ke kumu o kēia kūlana 'MRS'. ʻO kaʻoiaʻiʻo, ʻaʻole i hiki i nā kānaka ʻepekema ke loaʻa ke kumu pololei . Akā aia kekahi mau mea i manaʻo ʻia e kōkua i kēia kūlana:
- ʻO ka maʻi o Crohn: E like me kaʻu i ʻōlelo ai ma mua, he maʻi mumū mau kēia o nā ʻōpū. Ua ʻike ʻia he nui ka pilikia o ka poʻe me kēia maʻi i ka hoʻomohala ʻana iā MRS.
- Hoʻoilina hoʻoilina: ʻO ia hoʻi, hiki ke hoʻoili ʻia mai kēlā hanauna a i kēia hanauna. Inā ua loaʻa i kekahi o ka ʻohana kēia maʻi, hiki nō hoʻi ke lilo i kumu. Akā, ʻaʻole i hōʻoia ʻia kēia.
- ʻO ka hopena hypersensitivity: ʻO kēia ka wā e pane nui ai ka ʻōnaehana pale o ko mākou kino i kahi mea (a mākou e kapa nei he 'antigen' a i ʻole 'allergen' - ʻo ia hoʻi he mea ia e hoʻoulu ai i kahi allergy). Ua like ia me ka allergy, akā ʻoi aku ka paʻakikī.
- ʻO Sarcoidosis: He maʻi nō hoʻi kēia e hoʻoulu ai i nā puʻupuʻu liʻiliʻi (granulomas) e hana ʻia ma nā ʻāpana like ʻole o ke kino. Ua manaʻo ʻia hoʻi e pili ana kēia maʻi iā MRS.
- ʻO ka maʻi viral a bacteria paha: Aia kekahi manaʻo e hiki ke hana ʻia kēia ʻano ma hope o kahi maʻi i hoʻokumu ʻia e kahi virus a bacteria paha.
He maʻi Autoimmune anei ʻo `MRS`?
I kēia manawa, ke noʻonoʻo nei paha kekahi poʻe, "He `(maʻi Autoimmune)` anei kēia?" ʻO ia hoʻi, he kūlana anei ia kahi e hoʻouka ai ka ʻōnaehana pale ponoʻī o ko mākou kino i kā mākou mau hunaola olakino ponoʻī? ʻO ka ʻoiaʻiʻo, ʻaʻole i manaʻo ʻia ʻo `MRS` he `(maʻi Autoimmune)`.
Ua hoʻokaʻawale ʻia kēia he maʻi neurological . ʻO ia hoʻi, he pilikia ia me ka lolo a i ʻole ka ʻōnaehana nerve. Ua kapa ʻia hoʻi he maʻi granulomatous . ʻO ia hoʻi, he maʻi mau, pehu, puʻupuʻu (granuloma) e hana ʻia ana i loko o nā ʻiʻo o ke kino. Ua maopopo iā ʻoe? No laila, ʻaʻole ia e hāʻule pololei i loko o ka māhele o "autoimmune."
He aha nā hōʻailona o ka maʻi 'MRS'?
ʻAe, e nānā kākou i nā hōʻailona o kēia maʻi `MRS`, a i ʻole ke kūlana `(Orofacial Granulomatosis)` aʻu i ʻōlelo ai ma mua. ʻEkolu mau hōʻailona nui i ʻike ʻia ma kēia. Ua kapa ʻia kēia mau mea ʻo ka `classic triad of symptoms' .
1. Palsy maka: He ʻano kēia kahi e nāwaliwali ai a he mae paha ma kekahi ʻaoʻao o ka maka, i kekahi manawa ma nā ʻaoʻao ʻelua. ʻAʻole paha kēia e ʻike ʻia i nā pae mua, akā hiki ke ʻike ʻia i nā pae ma hope. I ka holomua ʻana o ka maʻi, hiki ke hoʻonui ʻia ka lōʻihi o kēia palasyo. E noʻonoʻo, ʻaʻole hiki ke hoʻoneʻe i kekahi ʻaoʻao o kou waha, pilikia i ka pani ʻana i kou mau maka, a i ʻole e kahe ana kekahi kihi o kou waha i waho i ka wā e inu ai i ka wai.
2. Ka pehu ʻana o ka maka: ʻIke pinepine ka poʻe me MRS i ka pehu ʻana o ka maka (Orofacial edema). He mea maʻamau ka pehu ʻana o ka lehelehe (Cheilitis granulomatosis). Pehu pinepine ka lehelehe luna ma mua o ka lehelehe lalo. Hiki ke maloʻo, māwae, ʻeha, a hiki ke ʻulaʻula-ʻeleʻele nā lehelehe. I kekahi poʻe, hiki i nā lehelehe ke paʻakikī e like me ka pōhaku. ʻAʻole wale nā lehelehe, akā, ʻo nā papālina, nā lihilihi maka, a i kekahi manawa hiki i ke poʻo ke pehu. Hiki i kēia pehu ke lilo i mea ʻoi aku ka koʻikoʻi a mau loa i ka wā e hoʻi hou mai ai ka maʻi.
3. ʻAlelo ʻūlū:ʻO kēia ke kumu o nā māwae hohonu e like me ke awāwa e hana ʻia ma luna o ke alelo. Ua kapa pū nā kauka i kēia he "alelo Scrotal" a i ʻole "Lingua plicata". ʻAʻole ʻeha kēia, akā hiki i kekahi poʻe ke ʻike i ka pehu, ka maneʻo, a me ka wela o ke alelo. Hiki iā ia ke hoʻolilo i ka nalowale o ka ʻono a alakaʻi i nā maʻi waha.
ʻO ka mea nui, ʻaʻole i loaʻa i nā kānaka a pau kēia mau ʻano ʻekolu. Loaʻa paha i kekahi poʻe hoʻokahi a ʻelua paha o kēia mau ʻano ʻekolu. Loaʻa paha i kekahi poʻe nā ʻano ʻekolu a pau.
ʻAʻole mau kēia mau hōʻailona. Hele mai a hele aku lākou. I ka manawa mua, hiki ke mau wale nō lākou no kekahi mau hola. Akā i ka wā e hoʻi mai ai lākou ma hope, hiki ke ʻoi aku ka koʻikoʻi a lōʻihi ka lōʻihi.
Nā hōʻailona ʻē aʻe
Ma waho aʻe o kēia mau hōʻailona nui, aia kekahi mau hōʻailona ʻē aʻe:
- Pōʻino
- ʻEha poʻo migraine
- Ke kani ʻana i nā pepeiao (tinnitus) a i ʻole ka nalowale o ka lohe
- Ma hope o ka lilo ʻana o ka maʻi i mea koʻikoʻi a ho'ōla ʻia, hiki ke ʻike ʻia nā ʻōpala ma ka maka i kekahi manawa .
- Paʻakikī ke ale ʻana
- Nā pilikia ʻike: Nā maka maloʻo, ka ʻike pōwehiwehi, a me ka mumū o ka maka (uveitis).
Pehea e ʻike ʻia ai ʻo MRS?
I kēia manawa, ke noʻonoʻo nei paha ʻoe, "Pehea lā wau e ʻike pono ai he ʻo kēia ʻo 'MRS'?" ʻOiaʻiʻo, he paʻakikī iki ke ʻike i ka ʻano o 'MRS'. No ka mea, hiki ke huikau ʻia kona mau hōʻailona me nā kūlana ʻē aʻe. No ka laʻana, hiki ke like kona mau hōʻailona me 'Allergic reactions' a i ʻole 'Bell's palsy', kekahi kūlana e hoʻoulu ai i ka maʻi lolo o ka maka.
ʻO ka maʻamau, ʻike ke kauka i ka MRS ma ka nānā ʻana i kou mōʻaukala inā loaʻa iā ʻoe ma ka liʻiliʻi ʻelua o nā hōʻailona maʻamau ʻekolu aʻu i ʻōlelo ai ma mua. I kekahi manawa, no ka hōʻoia ʻana i ka hōʻailona a me ka kāpae ʻana i nā kūlana ʻē aʻe, hiki ke lawe ʻia kahi ʻāpana liʻiliʻi o ka ʻiʻo mai kou lehelehe no ka hoʻāʻo ʻana (he biopsy). E nānā kēia i ke alo o nā granulomas.
Eia kekahi, hiki i ke kauka ke kuhikuhi iā ʻoe i kekahi mau loea ʻē aʻe, no ka mea hiki i kēia ke hoʻopilikia i nā ʻōnaehana he nui. ʻO kēia mau mea:
- Kauka ʻaleʻale
- Kauka ʻili
- Gastroenterologist - E nānā i nā mea e like me ka maʻi o Crohn.
- ʻO ka mea lapaʻau pale maʻi
- Kauka maka
Aia kekahi lāʻau lapaʻau no ka `MRS`? He aha nā lāʻau lapaʻau?
ʻAe, ʻo ka nīnau nui a ka poʻe he nui i kēia manawa, "Aia kekahi lāʻau lapaʻau piha no kēia maʻi 'MRS'?" ʻO ka mea kaumaha, ʻaʻohe lāʻau lapaʻau paʻa no 'MRS' i kēia manawa.
I kekahi manawa nalo nā hōʻailona me ka ʻole o ka lāʻau lapaʻau, akā hiki iā lākou ke hana hou.
No laila, pehea ʻoe e mālama ai? Inā hoʻi hou nā hōʻailona a hoʻopilikia, aia kekahi mau lāʻau lapaʻau e hiki ke kōkua i ka hōʻemi ʻana i ka ʻeha, pale i ka maʻi, a hoʻomaikaʻi i ke ʻano. ʻO lākou kēia:
- Nā lāʻau lapaʻau antibiotic: Inā loaʻa kahi maʻi bacteria.
- Nā Antihistamine: E hōʻemi i nā hōʻailona like me ka maʻi a me ka pehu.
- Corticosteroids: He mau lāʻau lapaʻau ikaika kēia e hōʻemi ana i ka mumū a me ka pehu. Hiki ke hāʻawi ʻia iā lākou ma ke ʻano he inikini pololei i loko o ka wahi pehu, a i ʻole he mau pila.
- Nā Immunosuppressants: Kōkua kēia i ka hōʻemi ʻana i ka mumū ma o ka kaohi iki ʻana i ka hana o ka ʻōnaehana pale.
- ʻO Methotrexate: He lāʻau lapaʻau kēia e kaohi ai i ka pale ʻana a hōʻemi i ka mumū.
- Nā lāʻau anti-inflammatory nonsteroidal (NSAIDs): E hōʻemi i ka ʻeha a me ka pehu (e.g., Ibuprofen, Diclofenac).
- ʻOki kino: Hiki ke hana ʻia ke ʻoki kino i kekahi manawa e hōʻemi i ka pehu ʻana i nā lehelehe pehu loa a i ʻole e hōʻoluʻolu i ke kaomi ma nā aʻalolo maka. Eia naʻe, ʻaʻole hana pinepine ʻia kēia.
- Nā mea hoʻopaʻa TNF-alpha: He ʻano lāʻau lapaʻau kūikawā kēia e kōkua ai i ka hoʻōki ʻana i ka mumū. Hāʻawi pinepine ʻia lākou inā ʻaʻole holo pono nā lāʻau ʻē aʻe.
Ua hoʻolālā ʻia kēia mau lāʻau lapaʻau e kāohi i nā hōʻailona a hōʻemi i ka ʻoluʻolu ʻole. Na kāu kauka e hoʻoholo i ka lāʻau lapaʻau kūpono loa iā ʻoe.
Hiki ke pale ʻia ke kūlana `MRS`?
Hiki ke pale ʻia kēia maʻi `MRS`? ʻOiaʻiʻo, ʻoiai ʻaʻole maopopo loa i nā kānaka ʻepekema nā kumu o kēia, ʻaʻohe ala i hōʻoia ʻia e pale aku ai. No laila, pono mākou e kālele i ka ʻike mua ʻana i nā hōʻailona a me ka ʻimi ʻana i ka lāʻau kūpono.
Pehea lā ʻo `MRS`? E ola anei ʻo ia?
He aha ka wā e hiki mai ana no kekahi me MRS? ʻOkoʻa maoli kēia mai kēlā kanaka a kēia kanaka. Loaʻa i kekahi poʻe nā hōʻailona liʻiliʻi loa, e like me hoʻokahi manawa i kēlā me kēia mau makahiki, a nalowale lākou iā lākou iho. No kekahi poʻe, ʻike pinepine ʻia nā hōʻailona, e like me kēlā me kēia mau lā, a e ʻoi aku ka ʻino i kēlā me kēia manawa.
Hiki i kēia maʻi ke ola a pau, a hiki ke mau loa ka pehu ʻana. Akā, ʻaʻole manaʻo nā kānaka ʻepekema e pili ana kēia maʻi i ke ola o ke kanaka. ʻO ia hoʻi, hiki iā ʻoe ke ola i kahi ola maʻamau me ia, akā pono ʻoe e ola me nā hōʻailona. No laila, he mea nui loa nō hoʻi ka noho ikaika ʻana o ka noʻonoʻo.
Nā nīnau e nīnau aku ai i kāu kauka
Inā loaʻa iā ʻoe ʻo Melkersson-Rosenthal Syndrome, a i ʻole ke manaʻo nei ʻoe he loaʻa iā ʻoe, he mea maikaʻi ke nīnau i kāu kauka i kēia mau nīnau:
- Pehea lā e hiki ai iā ʻoe ke ʻōlelo maopopo he Melkersson-Rosenthal Syndrome kēia? ʻAʻole paha he mea ʻē aʻe?
- He aha nā loea ʻē aʻe e pono iaʻu e ʻike? (e.g., dermatologist, neurologist, etc.)
- Inā hoʻi hou mai nā hōʻailona, i ka manawa hea e pono ai iaʻu e ʻimi i ke kōkua lapaʻau? He aha nā hōʻailona e pono ai iaʻu e hopohopo nui?
- Pono anei au e hoʻāʻo ʻia no ka maʻi a Crohn a i ʻole ka sarcoidosis?
- He aha kaʻu e hana ai e pale aku ai i ka maʻi, ka pehu mau, a me ka ʻeha?
- Ke paipai nei ʻoe i ka hoʻāʻo ʻana i ka genetic? He aha ka mea hiki iā ia ke haʻi iā ʻoe?
- Ua ʻike anei ʻoe i kekahi mau hui kākoʻo e kōkua ana i nā poʻe me kēia mau kūlana? Aia kekahi mau pono ke komo au iā lākou?
No laila, he aha nā mea nui loa e pono ai kākou e lawe i ka home mai kēia moʻolelo?
He maʻi laha ʻole ʻo Melkersson-Rosenthal Syndrome (MRS) e hoʻopilikia ai i nā aʻalolo maka. Inā ʻike ʻoe i ka pehu koke ʻana o ka maka, ka maʻi lolo o ka maka, a i ʻole nā māwae ʻē i kou alelo, pono ʻoe e ʻike i ke kauka.
ʻOiai ʻaʻohe lāʻau lapaʻau kūikawā no kēia, aia nā lāʻau lapaʻau kūpono e kāohi i nā hōʻailona, hōʻemi i ka ʻoluʻolu ʻole, a pale i nā pilikia. No laila, mai hopohopo. Me ka ʻike mua ʻana a me ka mālama kūpono, hiki iā ʻoe ke ola maikaʻi me kēia maʻi. ʻAʻole ʻoe hoʻokahi, a hiki i kāu mau kauka a me nā mea aloha ke kōkua iā ʻoe.
ʻO ka maʻi Melkersson-Rosenthal, MRS, pehu maka, maʻi lolo o ka maka, ke alelo māwae, neuropathy, granulomatosis orofacial
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