Ke heheʻe nei kou cartilage? E aʻo kākou e pili ana i kēia maʻi ʻē (Relapsing Polychondritis)?

I kekahi manawa hiki iā ʻoe ke ʻike i ka ʻeha ʻē a me ka pehu ʻana ma nā wahi like ʻole o kou kino, ʻeā? ʻOi loa aku hoʻi ma nā wahi e like me kou mau pepeiao a me kou ihu. ʻAʻole paha kēia he mau mea wale nō. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi i lohe pinepine ʻole ʻia, akā he mea nui loa ia e ʻike. Ua kapa ʻia kēia ʻo Relapsing Polychondritis . ʻOiai he paʻakikī iki ka inoa, e hoʻomaopopo maʻalahi kākou.

He aha kēia maʻi?

I ka ʻōlelo maʻalahi, ʻo ka Relapsing Polychondritis kahi maʻi laha ʻole e hoʻopilikia ana i ke cartilage i loko o ko mākou kino. ʻO ka mea e hana ʻia, ʻo ia ka mumū ʻana o ke cartilage (pehu ʻana, ʻulaʻula, a me ka ʻeha) a i ka hala ʻana o ka manawa, e emi mālie ana ke cartilage (heheʻe a mae). I kēia manawa ke noʻonoʻo nei paha ʻoe i ke ʻano o kēia cartilage. He ʻiʻo hoʻohui kūikawā ke Cartilage i loko o ko mākou kino. Ke hoʻomanaʻo nei ʻoe, e hoʻopā i ko mākou mau pepeiao, e hoʻopā i mua o ko mākou ihu. Aia kekahi ʻāpana palupalu iki, akā ikaika iki ma kēlā mau wahi, ʻo ia hoʻi ke cartilage. Loaʻa kēia mau mea ma nā wahi he nui o ko mākou mau hono, ka ʻāʻī, a me ka trachea. Hoʻopilikia nui kēia maʻi 'Relapsing Polychondritis' i:

• I ke kāʻei i loko o kou mau pepeiao .
• I ke kāʻei ma kou ihu .
• Aia kou larynx (ka pahu a mākou e kamaʻilio nei) i loko o kou puʻu .
• Kou ʻōpū hanu (trachea) .

Ua kapa ʻia kēia maʻi e kekahi mau inoa ʻē aʻe, akā ʻoi aku ka ʻano lapaʻau: 'Chronic atrophic polychondritis', 'Generalized or systemic chondromalacia', 'Meyenburg-Altherr-Uehlinger syndrome', 'Relapsing perichondritis', 'Von Meyenburg disease'. Eia naʻe, ʻo ka inoa i hoʻohana pinepine ʻia ʻo 'Relapsing Polychondritis'.

ʻO wai ka mea hiki ke loaʻa i kēia? Pehea ka maʻamau?

Hiki i kēia maʻi ke hoʻopilikia i kekahi. Eia nō naʻe, hoʻomaka pinepine ia i nā kānaka ma waena o 40 a me 60 mau makahiki. Ma ke ʻano o kona maʻamau, he maʻi laha ʻole ia. Wahi a nā kānaka noiʻi, hoʻopilikia ia ma kahi o hoʻokahi i loko o ʻelua haneli kanawalukūmālima tausani (285,000) mau kānaka. ʻO ia hoʻi, hoʻopilikia ia i kahi helu liʻiliʻi loa o ka poʻe i loko o kahi heluna nui. ʻO ia ke kumu i ʻōlelo nui ʻole ʻia ai kēia maʻi i loko o ke kaiāulu.

No ke aha lā kēia e hana nei? He aha ke kumu?

ʻO ka nīnau a ka poʻe he nui, "No ke aha i loaʻa ai kēia maʻi?" ʻO kaʻoiaʻiʻo, ʻaʻole i ʻike pono nā kānaka ʻepekema i ke kumu o ka Relapsing Polychondritis. Eia nō naʻe, manaʻoʻiʻo kekahi poʻe ʻepekema he maʻi autoimmune ia.I kēia manawa, ke noʻonoʻo nei paha ʻoe, "He aha kēia maʻi autoimmune?" I ka ʻōlelo maʻalahi, he ʻōnaehana pale ko ko kākou kino. ʻO kāna hana ke pale iā kākou mai nā maʻi ma ke kaua ʻana i nā germs haole. Ua like ia me ka loaʻa ʻana o kahi hui o nā koa i loko o ko kākou kino. Akā i nā maʻi autoimmune, hoʻomaka hewa kā kākou mau koa ponoʻī e hoʻouka i kā kākou mau cell a me nā ʻiʻo olakino . I ka Relapsing Polychondritis, ua manaʻo ʻia e hoʻouka ana ka ʻōnaehana pale i ko kākou cartilage ma kēia ʻano. Akā, ʻaʻole maopopo i ke kumu o kēia.

He aha nā hōʻailona o kēia?

ʻAʻole maʻamau ka polychondritis relapsing he kūlana hoʻomau. Hele mai a hele i nā hanana a i ʻole nā ​​​​​​flares. Ke ʻike ʻia nā hōʻailona, ​​​​hiki iā lākou ke mau no kekahi mau lā a i ʻole nā ​​​​pule. A laila nalo lākou. Eia naʻe, hiki i nā hōʻailona ke hoʻi hou i nā makahiki he nui. Nā hōʻailona mua: No nā poʻe he nui, hoʻomaka ka maʻi me ka ʻeha, ka palupalu, ka pehu, a me ka ʻulaʻula i hoʻokahi a i ʻole nā ​​​​pepeiao ʻelua . ʻO ka mea nui, hoʻopilikia kēia mau hōʻailona i ke cartilage i loko a ma waho o ka pepeiao, akā ʻaʻole ka earlobe . I kekahi manawa hiki i ka pepeiao ke palupalu . E noʻonoʻo i kekahi lā, loaʻa koke i kāu hoaaloha ʻo Sunil kahi pepeiao ʻeha, ʻulaʻula, a pehu. Ua manaʻo ʻo ia he maʻi allergy wale nō. Ua hala ia i loko o kekahi mau lā. Akā ma hope o kekahi mau mahina, ua like hou ka pepeiao ʻē aʻe. Penei e hoʻomaka ai nā hōʻailona o kēia. Nā hōʻailona ʻē aʻe:

• ʻO ke komo ʻana o ke cartilage ihu: Hiki i kēia ke kumu o ka hiolo ʻana o ke alahaka o ka ihu, e hopena ai i kahi kūlana i kapa ʻia ʻo ka deformity ihu noho (ua like ka ihu me ka noho lio ma ke kua o ka lio).
• ʻEha hono : Hiki ke loaʻa ka ʻeha hono , e like me ka rumatika .
• Paʻa ka ihu .
• ʻEha ma waenakonu o ka umauma , kokoke i ka iwi umauma .
• ʻEha maka a me ka ʻulaʻula .
• Inā pilikia ka pepeiao o loko: Ka nalowale o ka lohe, ke kani mau ʻana o nā pepeiao (tinnitus) ,Hiki ke loaʻa nā mea e like me ka dizziness (vertigo) .
• Paʻakikī ka hanu ʻana: Hana ʻia kēia inā pilikia ka ʻōpū hanu (trachea). Hiki ke pilikia ka ʻōlelo ʻana inā pilikia ka larynx.

Mea nui: Hiki i ka paʻakikī o ka hanu ʻana ke lilo i mea koʻikoʻi, no laila e ʻimi koke i ke kōkua lapaʻau.

Nā hōʻailona kakaikahi: ʻAʻole ʻike pinepine ʻia kēia mau mea, akā hiki i kekahi poʻe ke ʻike iā lākou:

• Nā pilikia o ka valve puʻuwai.
• He kani puʻuwai ʻē aʻe (Heart murmur).
• Ka nalowale o ka ʻike.
• Maʻi puʻupaʻa.

Ma hea ? Pehea e ʻike ai nā kauka i kēia?

Inā loaʻa iā ʻoe kēia mau hōʻailona, ​​ʻoi aku ka maikaʻi o ke ʻike ʻana i ke kauka. Eia nō naʻe, ʻaʻohe hoʻokolohua hoʻokahi e hiki ai ke ʻike i ka Relapsing Polychondritis. ʻO ia hoʻi, ʻaʻohe hoʻokolohua koko hoʻokahi a i ʻole scan e hiki ke haʻi iā ʻoe "ʻo kēia ka Relapsing Polychondritis." E kānalua ke kauka he maʻi kou inā ua loaʻa iā ʻoe ma ka liʻiliʻi he ʻekolu o kēia mau hōʻailona no ka manawa lōʻihi. No ka laʻana, inā loaʻa iā ʻoe ka hui pū ʻana o nā hōʻailona e like me ka pehu ʻana o ke cartilage i loko o kou pepeiao, ka pehu ʻana o ke cartilage i loko o kou ihu, a me ka ʻeha hui, hiki i kāu kauka ke kānalua i kēia. I kekahi manawa, e kōkua i ka hōʻoia ʻana i ka hōʻailona:

• Hiki ke hana i kahi biopsy ma ka lawe ʻana i kahi ʻāpana o ke cartilage mai ka pepeiao .
• Hiki ke hana ʻia kekahi mau hoʻāʻo koko (e kāpae i nā kūlana olakino ʻē aʻe a nānā i nā hōʻailona o ka mumū).

He aha ka lāʻau lapaʻau no kēia?

ʻO ka mea pōʻino, ʻaʻohe lāʻau lapaʻau no ka Relapsing Polychondritis. ʻO ia hoʻi, ʻaʻohe lāʻau lapaʻau i kēia manawa. Eia naʻe, ʻaʻole ia manaʻo ʻaʻohe mea hiki ke hana ʻia. ʻO nā pahuhopu nui o ka mālama ʻana:

• Hoʻomaha i nā hōʻailona (hoʻemi i ka ʻeha, ka pehu).
• Ka hōʻemi ʻana i ka pilikia o nā pilikia.

Hoʻomaka pinepine ka lāʻau lapaʻau me nā lāʻau lapaʻau e like me:

• Colchicine: He lāʻau lapaʻau kēia i hāʻawi pinepine ʻia no ka gout.
• Corticosteroids: No ka laʻana , prednisone . He mau lāʻau lapaʻau ikaika kēia e hōʻemi ana i ka mumū.
• ʻO Dapsone: He lāʻau lapaʻau kēia i hoʻohana ʻia e hakakā i nā maʻi.
• Nā lāʻau anti-inflammatory non-steroidal (NSAID): Kōkua kēia i ka hōʻemi ʻana i ka ʻeha a me ka pehu.

Inā ʻoi aku ka koʻikoʻi o ke kūlana, hiki i nā kauka ke kuhikuhi i nā lāʻau lapaʻau e like me kēia:

• Nā lāʻau lapaʻau e kāohi ana i ka ʻōnaehana pale: No ka laʻana , cyclophosphamide a i ʻole azathioprineʻO ka hana a kēia mau mea, ʻo ia ka hōʻemi ʻana i ka hana o ka ʻōnaehana pale kino e hana hewa nei.
• ʻO Methotrexate: He lāʻau hoʻopau pale kēia i hoʻohana ʻia e mālama i nā maʻi e like me ka maʻi ʻaʻai.

I nā hihia koʻikoʻi loa, pono paha ke ʻoki ʻana:

• ʻO ke ʻoki ʻana i ka valve o ka puʻuwai: Inā ua hōʻino ʻia nā valve o ka puʻuwai.
• Tracheostomy: Inā paʻa loa ka ʻōpū makani, pono e hoʻokomo pololei ʻia kahi paipu mai ka puʻu i loko o ka ʻōpū makani.
• Nā ala e wehe ai i ke ala ea:
• Ke kau ʻana i kahi stent: Hoʻokomo ʻia kahi paipu liʻiliʻi, e like me ka stent laryngeal, i loko o ka larynx a i ʻole trachea e wehe mau ai.
• Ka hoʻonui ʻana o ke alaea: Hoʻohana ʻia kahi mea hana, e like me ka balloon, e hoʻonui i ke alaea i hāiki ʻia.
• ʻO ke ʻoki kino e hana hou i ka trachea a i ʻole ka larynx .

ʻAʻole anei hiki ke pale ʻia kēia?

ʻOiai ʻaʻole ʻike ʻia ke kumu kikoʻī o ka Relapsing Polychondritis , he mea paʻakikī ke ʻōlelo pehea e pale aku ai. I kēia manawa, ʻaʻohe mau hoʻolālā pale kikoʻī .

He maʻi make anei kēia? He aha ka lōʻihi o ke ola?

He mea weliweli paha kēia, akā maikaʻi ke ola o ka poʻe me ka Relapsing Polychondritis . Ua hōʻike ʻia nā haʻawina he 95% o nā maʻi e ola mau ana i 8 mau makahiki ma hope o ka hōʻoia ʻana. Eia nō naʻe, hiki iā ia ke hana i nā pilikia e hoʻoweliweli ai i ke ola . He mea weliweli loa ka paʻakikī o ka hanu ʻana . Aia kekahi pilikia o ka lohe mau ʻana a i ʻole ka nalowale ʻana o ka ʻike . No laila, he mea nui loa ia e hoʻolohe i nā hōʻailona a lawe i ka lāʻau e like me ke kauoha a kāu kauka.

Pehea ka lōʻihi o kēia?

He maʻi mau ka Polychondritis hou. ʻO ke ʻano kēia, ʻaʻole ia he maʻi e hele mai a hele aku, akā , he maʻi no ke ola holoʻokoʻa . Eia nō naʻe, me ka mālama pono ʻana, hiki iā ʻoe ke hōʻemi i ke alapine o nā hōʻailona a hoʻemi i ke koʻikoʻi o nā hōʻailona ke kū mai lākou. No laila, he mea nui e kamaʻilio me kāu kauka a hoʻomohala i kahi hoʻolālā lapaʻau e kūpono iā ʻoe.

He aha hou aʻe kāu e nīnau ai i ke kauka?

Inā ʻōlelo kāu kauka he 'Relapsing Polychondritis' kou, hiki iā ʻoe ke nīnau i nā nīnau e like me kēia e aʻo hou aʻe e pili ana i ia mea:

• "E ke kauka, pehea ke koʻikoʻi o koʻu kūlana?"
• "He aha nā lāʻau lapaʻau maikaʻi loa iaʻu?"
• "Pono anei iaʻu e hana i nā hoʻokolohua kūikawā ma koʻu mau ʻōpū e like me koʻu mau maka, nā pepeiao, ka ʻōnaehana hanu, ka puʻuwai, a me nā puʻupaʻa?"
• "Pono anei au e ʻike i nā loea ʻē aʻe (e.g., pepeiao, ihu, loea puʻu, loea hui)?"
• "Aia kekahi mea hiki iaʻu ke hana pilikino e hoʻoikaika i koʻu cartilage, a i ʻole e hoʻolohi i kēia nalowale o ke cartilage?"
• "Aia kekahi noiʻi hou a i ʻole nā ​​hoʻokolohua lapaʻau e hana ʻia nei ma kēia maʻi?"

Ma ka nīnau ʻana i kēia mau nīnau, hiki iā ʻoe ke hoʻomaopopo maikaʻi i kou kūlana a komo ikaika i kāu mālama ʻana.

Āhea wau e ʻike ai i ke kauka i ka wā hikiwawe loa?

Inā loaʻa iā ʻoe ka Relapsing Polychondritis, he mea nui loa ia e mālama i nā manawa maʻamau me kāu kauka. Eia kekahi, inā pilikia ʻoe i ka hanu ʻana, nā loli i ka ʻike, a i ʻole ka lohe ʻana , mai kali a hiki i kāu manawa aʻe. E ʻimi koke i ke aʻo lapaʻau . I kekahi manawa hiki i kēia ke lilo i mau kūlana e pono ai ka mālama wikiwiki.

No laila, he aha nā mea e pono ai kākou e hoʻomanaʻo?

Ua maopopo paha iā ʻoe i kēia manawa ka mea a mākou i kamaʻilio ai, ʻo ia hoʻi ka 'Relapsing Polychondritis'. ʻO ka mea hope loa, ʻo nā mea nui e hoʻomanaʻo ai, ʻo ia kēia:

• He maʻi laha ʻole ka Relapsing Polychondritis kahi e pehu ai ke cartilage o ke kino a haki.
• ʻO ka hapa pinepine, ua kuhikuhi ʻia nā pepeiao a me ka ihu, akā hiki ke hoʻopilikia i nā wahi e like me ka puʻu, trachea, a me nā hono.
• ʻAʻole i ʻike ʻia ke kumu maoli o kēia, akā ua manaʻo ʻia he maʻi autoimmune ia.
• ʻOiai ʻaʻohe lāʻau lapaʻau piha, aia nā lāʻau lapaʻau e kāohi i nā hōʻailona a hōʻemi i nā pilikia.
• Ma muli o nā mea e like me ka paʻakikī o ka hanu ʻana he mea weliweli ia, he mea nui e hoʻolohe i nā hōʻailona a ʻike koke i ke kauka.

Inā loaʻa iā ʻoe a i ʻole kekahi āu i ʻike ai kekahi o kēia mau hōʻailona, ​​​​mai makaʻu e ʻike i ke kauka a loaʻa ka ʻōlelo aʻoaʻo. ʻO ka ʻike ʻana i nā maʻi āpau e kōkua iā ʻoe e ola i kahi ola olakino! Polychondritis Relapsing, Cartilage, ʻEha pepeiao, Pehu o ka ihu, Paʻakikī ka hanu ʻana, ʻEha hui, Maʻi Autoimmune, Mumura, Nā maʻi laha ʻole