Ke manaʻo nei ʻoe e like me ke kaua ʻana o kou kino iā ʻoe mai loko mai? He Antisynthetase Syndrome paha ia!

Ke manaʻo nei ʻoe i kekahi manawa e hoʻopilikia nei kekahi mea iā ʻoe mai loko mai? Hiki paha i kou mau hono ke ʻeha wale, manaʻo ʻoe he pōkole iki ka hanu, a i ʻole e ʻike paha ʻoe i kekahi mau loli liʻiliʻi i kou ʻili. Mai hoʻokuke wale i kēia mau mea me he mea lā e hana nei. I kekahi manawa aia kahi moʻolelo paʻakikī ma hope o lākou. I kēia lā e kamaʻilio mākou e pili ana i kahi maʻi kakaikahi, akā hiki ke hoʻokele ʻia i kapa ʻia ʻo Antisynthetase Syndrome.

He aha ka Antisynthetase Syndrome? I ka ʻōlelo maʻalahi...

He maʻi laha ʻole ka Antisynthetase Syndrome. ʻO ka mea e hana ʻia ma kēia, aia ka mumū ma loko o ko mākou kino, ʻo ia hoʻi, kahi maʻi e like me ka mumū. He maʻi autoimmune maoli kēia. I kēia manawa ke nīnau nei ʻoe he aha ka maʻi autoimmune.

E noʻonoʻo, he ʻōnaehana pale maʻi ko ko kākou kino. Ua like ia me kahi pūʻali koa e pale ana i ko kākou ʻāina. Mālama nā ʻāpana a me nā ʻōpū o kēia ʻōnaehana iā kākou mai nā huakini, nā bacteria, a me nā virus e hoʻoulu ai i nā maʻi. Eia nō naʻe, i loko o kahi maʻi autoimmune, hele hewa kēia ʻōnaehana pale. Manaʻo ia he "ʻenemi" ko kākou mau ʻāpana olakino a me nā ʻiʻo a hoʻomaka e hoʻouka iā lākou. Ua like ia me ko kākou pūʻali koa ponoʻī e hoʻouka ana i ko kākou mau home ponoʻī. ʻAʻole hiki i nā kauka ke hoʻomaopopo pono i ke kumu o kēia.

I loko o ka Antisynthetase Syndrome, hiki i kā mākou ʻōnaehana pale ke hoʻopilikia i nā ʻāpana o ko mākou kino:

• Nā ʻiʻo
• Nā hono
• Nā māmā
• ʻIli
• Nā kīʻaha koko

ʻO ka mea nui loa, ʻo ia ke ʻike ʻana i ke kauka inā ʻike ʻoe i kekahi ʻeha hou o nā hono, nā loli o ka ʻili, a i ʻole ka paʻakikī o ka hanu ʻana, me ka hoʻowahāwahā ʻole ʻana.

Pehea ka laha ʻole o kēia maʻi?

He maʻi laha ʻole kēia (Antisynthetase Syndrome). He mea paʻakikī ke ʻōlelo pololei i ka nui o ka poʻe i loaʻa iā ia. No ka mea, he kakaikahi wale nō nā hihia i hōʻike ʻia i kēlā me kēia makahiki. I kekahi manawa, ua like kēia mau hōʻailona me nā hōʻailona o nā maʻi ʻē aʻe, a hiki ke ʻike ʻole ʻia.

He aha nā hōʻailona o ka Antisynthetase Syndrome?

ʻO nā hōʻailona āu e loaʻa ai e pili ana i ka maikaʻi o ka hana ʻana o kāu ʻōnaehana pale ma kou kino a me ka ʻino o kona hōʻino ʻana iā ia.

I ka manawa pinepine, loaʻa i nā poʻe me ka Antisynthetase Syndrome nā hōʻailona o kekahi mau maʻi ʻē aʻe. E nānā kākou i ke ʻano o lākou:

• Myositis: He mumū lōʻihi kēia o nā ʻiʻo. Hoʻopilikia kēia i ka ʻeha a me ka nāwaliwali o nā ʻiʻo.Hana ʻia ia. E noʻonoʻo, ua nāwaliwali loa ʻoe a hiki ʻole iā ʻoe ke hāpai i kou mau lima. I kekahi manawa ua nāwaliwali nā ʻiʻo o kou puʻu, e paʻakikī ai ke ale i ka meaʻai a me ka mea inu. Kāhea mākou i kēlā dysphagia .

• "Nā lima o ka mīkini": ʻAʻole anei he inoa ʻē kēia? ʻO kēia kahi e mānoanoa ai ka ʻili ma nā poho lima a me nā ʻaoʻao o nā manamana lima a māwae. Ua like ia me nā lima o kahi mīkini e hana ana me ka ʻaila a me ka ʻaila i ka lā a pau.

• ʻO ka maʻi māmā interstitial (ILD): ʻO kēia ka wā e hōʻino ʻia ai nā ʻiʻo ma waena o nā ʻeke ea liʻiliʻi (alveoli) i loko o ko kākou mau māmā a me nā kīʻaha koko a puni lākou. Hiki i kēia ke hana i ka pōkole o ka hanu (dyspnea) , ka ʻū maloʻo , ka luhi , a me ka ʻeha o ka umauma . Ua like ia me ka hāʻule ʻana i lalo o kahi alapiʻi.

• ʻO Polyarthritis: ʻO kēia ka wā e hoʻopilikia ʻia ai ʻelima a ʻoi aku paha nā hono i ka manawa like. Hoʻoulu kēia i ka ʻeha, ka ʻoʻoleʻa, a me ka pehu ʻana i nā hono . Hiki paha iā ʻoe ke manaʻo he ʻoʻoleʻa ke ala ʻoe i ke kakahiaka.

• ʻO ka hanana ʻo Raynaud (ka lua o ka maʻi Raynaud): Ma kēia, loli ke kala o nā manamana lima a me nā manamana wāwae (lilo i ke keʻokeʻo, a laila polū, a laila ʻulaʻula) a lilo i mea mae, ʻoiai ke kau ʻia i ke anu. Ua like ia me kou mau manamana lima e mae ana ma hope o ka lawe ʻana i kahi pahu hau mai loko mai o ka pahu hau.

• Kuni: Hiki i kekahi poʻe ke loaʻa i ke kuni me ka ʻole o ka maʻi i loko o ko lākou kino. ʻO ke ʻano kēia, piʻi ka mahana o ke kino ma muli o kēia hana a ka ʻōnaehana pale.

He aha ke kumu o ka Antisynthetase Syndrome?

ʻAʻole ʻike ʻia ke kumu kikoʻī o kēia maʻi . Akā ua ʻike nā kauka he nui ka poʻe me kēia maʻi he ʻano antibodies kūikawā i loko o ko lākou koko. Hōʻike kēia mau antibodies e hoʻouka ana kā lākou ʻōnaehana pale i ko lākou kino ponoʻī ma kahi o ka pale ʻana iā lākou. Kāhea mākou i kēia mau mea (autoantibodies) , ʻo ia hoʻi "nā antibodies ponoʻī".

I kēia manawa, e nānā, he mau protein nā antibodies e pale mai iā kākou ke komo mai kahi mea ʻino i loko o ko kākou kino. Ua like lākou me nā hōʻailona kemika a kā kākou ʻōnaehana pale e hoʻohana ai. Hōʻailona kēia mau antibodies i nā mea hoʻouka kaua ʻino e like me nā bacteria a me nā virus ma ke ʻano he "pōʻino." Akā inā loaʻa iā ʻoe kahi maʻi autoimmune, hana hewa kāu ʻōnaehana pale a hoʻokuʻu i nā antibodies e hoʻouka i nā ʻiʻo olakino.

ʻO ka poʻe me ka Antisynthetase Syndrome he mau autoantibodies ko lākou e hoʻouka ana i nā enzymes i kapa ʻia ʻo tRNA synthetases . He mau enzymes koʻikoʻi a pono kēia mau tRNA synthetases e pono ai ko mākou kino e hana pono.

He mea pohihihi nō ke kumu e hoʻomaka ai kā mākou ʻōnaehana pale e hana i kēia mau autoantibodies. Eia nō naʻe, inā loaʻa iā ʻoe nā hōʻike o kēia mau autoantibodies i loko o kou koko, he mea hiki loa ke loaʻa iā ʻoe ka Antisynthetase Syndrome.

Penei ke ʻano, e noʻonoʻo i kekahi e hoʻā ana i nā mea puhi ahi ma ke alo o kou hale. Ke nānā ʻoe iā ia i ke kakahiaka aʻe, aia nā ʻāpana o nā mea puhi ahi a me nā ala i puhi ʻia i hoʻopuehu ʻia ma ka honua. ʻAʻole paha ʻoe i ʻike pono i ka mea nāna i hoʻā i nā mea puhi ahi, i ka wā i hoʻā ʻia ai, a i ʻole ke kumu. Akā aia nā hōʻike i hana ʻia ai. I ka Antisynthetase Syndrome, ma kahi o ka walaʻau āu e lohe ai i ka wā e hoʻā ai ʻoe i nā mea puhi ahi a makaʻu nā ʻīlio, ʻike ʻoe i nā hōʻailona a mākou i kamaʻilio ai ma mua.

ʻO wai ka mea i pilikia nui i ka loaʻa ʻana o kēia maʻi?

Hiki i kekahi ke loaʻa i ka Antisynthetase Syndrome. Eia nō naʻe, ʻoi aku ka nui o ka loaʻa ʻana o kēia maʻi i nā wahine a me nā poʻe ma luna o 50 mau makahiki . ʻOi aku ka pālua o ka loaʻa ʻana o kēia maʻi i nā wahine ma mua o nā kāne.

Pehea e ʻike ʻia ai ka Antisynthetase Syndrome?

Hoʻoponopono ke kauka i kēia maʻi ma muli o kāu mau hōʻailona, ​​​​kahi hoʻokolokolo kino, a me kekahi mau hoʻokolohua ʻē aʻe.

Pono paha ʻoe e ʻike i ke kauka loea i nā maʻi autoimmune, i kapa ʻia he rheumatologist . E nānā ʻo ia iā ʻoe a nīnau iā ʻoe e pili ana i kāu mau hōʻailona. Pono ʻoe e haʻi i ke kauka i kāu mau hōʻailona, ​​​​i ka wā i ʻike mua ai ʻoe iā lākou, a inā paha he mea e hoʻonui ai iā lākou.

Eia kekahi, pono ʻoe e hana i kekahi mau hoʻokolohua e hōʻoia i loaʻa iā ʻoe ka Antisynthetase Syndrome a e kāpae i nā kūlana ʻē aʻe e hiki ai ke hana i nā hōʻailona like.

He aha nā hoʻokolohua e hoʻohana ʻia e ʻike ai i ka maʻi?

ʻAʻole kēia he hoʻāʻo hoʻokahi e hiki ke hōʻoia pono i ka maʻi. ʻO kēia kekahi hapa o ke kaʻina hana i kapa ʻia ʻo ka differential diagnosis . ʻO ke ʻano kēia e hana kāu kauka i kekahi mau hoʻāʻo e ʻike i ke kumu o kāu mau hōʻailona, ​​​​e kāpae i nā kūlana ʻē aʻe, a ma ka hope loa e hōʻoia iā ʻoe me ka Antisynthetase Syndrome. ʻO kekahi o nā hoʻāʻo āu e loaʻa ai:

• Nā hoʻāʻo koko: No ka nānā ʻana i ke ʻano o ka hana ʻana o kāu ʻōnaehana pale a e ʻike inā he mau autoantibodies kou, ʻo ia ka hōʻailona o ka Antisynthetase Syndrome. Hiki i nā hoʻāʻo koko ke nānā no ka piʻi ʻana o nā pae o kekahi mau enzymes i hoʻokuʻu ʻia i loko o ke koko ke hōʻino ʻia nā ʻiʻo.
• Urinalysis: E nānā i ka hana o nā puʻupaʻa a e nānā i nā maʻi a i ʻole nā ​​​​pilikia ʻē aʻe i loko o ka mimi e hiki ke hoʻoulu i kāu mau hōʻailona.
• Nā hoʻāʻo hana puʻuwai: E nānā e ʻike inā ua hoʻopilikia ʻia kou mau māmā a i ʻole ka ʻōnaehana hanu.
• ʻO nā scan tomography computed (CT) a i ʻole nā ​​​​hoʻokolohua kiʻi ʻē aʻe: E kiʻi i nā kiʻi o nā ʻiʻo a me nā ʻōpū i loko o ke kino.
• (Electromyography - EMG):E nānā i ka hana o nā ʻiʻo.
• ʻO ke kiʻi ʻana o ka magnetic resonance imaging (MRI) o nā ʻiʻo i hoʻopilikia ʻia: e nānā no ka mumū.
• ʻO ka biopsy kahi hoʻokolohua e pili ana i ka lawe ʻana i kahi ʻāpana liʻiliʻi o ke kino a i ʻole ka ʻiʻo māmā.

Pehea e mālama ʻia ai ka Antisynthetase Syndrome?

ʻAʻohe lāʻau lapaʻau no ka Antisynthetase Syndrome. Eia nō naʻe, hiki i kāu kauka ke kōkua iā ʻoe e ʻimi i kahi hui pū ʻana o nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i kāu mau hōʻailona, ​​​​e hōʻemi i ko lākou hopena i kou ola o kēlā me kēia lā, a hoʻemi i ka hōʻino ʻana i kou mau kino.

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. Eia kekahi o nā lāʻau lapaʻau i hoʻohana pinepine ʻia:

• Corticosteroids: He mau lāʻau lapaʻau kēia e hōʻemi ana i ka ʻeha a me ka pehu. Hoʻomaopopo pinepine nā kauka i nā corticosteroids me nā lāʻau i kapa ʻia he immunosuppressants.
• Nā Immunosuppressants: Hana kēia mau lāʻau lapaʻau ma ka hoʻōki ʻana i kāu ʻōnaehana pale mai ka hoʻouka ʻana i nā cell a me nā ʻiʻo olakino. ʻO ke ʻano o ka lāʻau lapaʻau āu e pono ai e pili ana i nā ʻōpū i hoʻopilikia ʻia. ʻO nā immunosuppressants maʻamau ka methotrexate, azathioprine, a me mycophenolate . Pono paha ʻoe i ka cyclophosphamide, rituximab, a i ʻole tacrolimus .
• Lapaʻau no ka Maʻi ʻUlu Interstitial (ILD): Hiki ke hāʻawi ʻia iā ʻoe ka lāʻau lapaʻau e maʻalahi ai ka hanu ʻana, a i ʻole ka lāʻau lapaʻau oxygen inā makemake ʻoe i ka oxygen keu. Pono ʻoe e hana pū me kahi pulmonologist e hoʻokele i kāu mau pilikia hanu.
• Hoʻōla kino: Hiki i kahi mea hoʻōla kino ke kōkua iā ʻoe e hoʻomaikaʻi i ka neʻe ʻana o kou kino. Hiki iā lākou ke kōkua i ka hoʻokele ʻana i nā hōʻailona pili i nā ʻiʻo a i ʻole e kuhikuhi i nā hoʻomaʻamaʻa hanu e hoʻoikaika i kou mau māmā. Pono paha ʻoe i ka hoʻoponopono hou ʻana o ka pulmonary .

He aha ka mea e hana inā loaʻa iaʻu ka Antisynthetase Syndrome?

Hiki i kāu kauka ke kōkua iā ʻoe e loaʻa i kahi hui pū ʻana o nā lāʻau lapaʻau e hiki ai ke hoʻokele i kāu mau hōʻailona.

He maʻi mau ka Antisynthetase Syndrome. ʻO ke ʻano kēia, pono ʻoe e mālama i nā hōʻailona no ka manawa lōʻihi (hiki paha i kou ola holoʻokoʻa).

He mea make anei (Antisynthetase Syndrome)?

ʻAʻole make pinepine ka Antisynthetase Syndrome. ʻAʻole i hoʻopilikia nui ʻia ke ola o ka poʻe e noho nei me kēia maʻi. Noho ka nui o ka poʻe me kēia maʻi no ke koena o ko lākou ola, akā hiki iā lākou ke kaohi i kā lākou mau hōʻailona me ka lāʻau lapaʻau.

Eia nō naʻe, inā loaʻa iā ʻoe ka maʻi māmā interstitial koʻikoʻi a i ʻole kekahi pilikia ʻē aʻe e hoʻopilikia ai i kou ʻōnaehana hanu, hiki ke make. Akā he mea kākaʻikahi loa ia. E haʻi aku kāu kauka iā ʻoe i ka mea e manaʻo ai, a me nā hōʻailona e loli nei paha he mau hōʻailona mua o nā pilikia hanu koʻikoʻi.

Hiki iaʻu ke pale aku i ka hoʻomohala ʻana o ka Antisynthetase Syndrome?

ʻAʻohe ala e pale aku ai i ka Antisynthetase Syndrome, no ka mea, ʻaʻole maopopo i ka poʻe akamai ke kumu o ia mea a i ʻole ka mea e hoʻonui ai i ka pilikia.

Āhea wau e ʻike ai i ke kauka?

Inā loaʻa iā ʻoe nā hōʻailona hou, ʻoiai inā e ʻoi aku ka ʻino, e ʻike i ke kauka . Inā manaʻo ʻoe ʻaʻole i kaohi ʻia kāu mau hōʻailona e like me ka wā ma mua me kāu lāʻau lapaʻau, a inā paha e paʻakikī ana kāu mau hōʻailona i kāu hana o kēlā me kēia lā, e kamaʻilio me kāu kauka.

Āhea wau e hele ai i ka lumi pilikia?

Inā loaʻa iā ʻoe kekahi o kēia mau hōʻailona, ​​e hele koke i ka lumi pilikia a kāhea aku paha i ka 911 (a i ʻole kāu helu pilikia kūloko) :

• Ka paʻakikī koke o ka hanu ʻana.
• Ka pōkole nui o ka hanu (manaʻo e like me ʻaʻole hiki iā ʻoe ke hanu).
• Polū ke kala o ka ʻili, nā lehelehe, a i ʻole nā ​​​​mākuʻi lima (cyanosis).
• ʻEha a kaumaha paha ka umauma.

He aha nā nīnau e pono iaʻu e nīnau aku i kaʻu kauka?

• Loaʻa iaʻu ka Antisynthetase Syndrome a i ʻole kekahi maʻi autoimmune ʻē aʻe?
• He aha ke ʻano o nā hoʻokolohua e pono ai iaʻu e hana?
• He aha nā lāʻau lapaʻau maikaʻi loa e kāohi ai i kaʻu mau hōʻailona?
• E pono anei iaʻu ka hoʻōla kino a i ʻole ka hoʻoponopono hanu?
• Pehea ka pilikia oʻu no nā pilikia koʻikoʻi o ka māmā?

He aha nā inoa ʻē aʻe no ka Antisynthetase Syndrome?

I kekahi manawa, kapa nā kauka i ka Antisynthetase Syndrome ma nā inoa ʻē aʻe. Eia kekahi laʻana:

• (ʻO ka maʻi hemahema Antisynthetase)
• (maʻi AS)
• (ʻO ka maʻi Anti-Jo1)

He mau inoa like ʻole kēia a pau no ke kūlana like.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai (Leka Lawe-Home)

He ʻano laha ʻole ka Antisynthetase Syndrome kahi e hoʻouka ai kāu ʻōnaehana pale i kou kino ma kahi o ka pale ʻana iā ʻoe. E kamaʻilio me kāu kauka e pili ana i nā lāʻau lapaʻau e hiki ke kōkua i ka hōʻemi ʻana i ka hopena o kāu mau hōʻailona i kou ola o kēlā me kēia lā.

Hiki ke hoʻonāukiuki loa ka noho ʻana me kahi maʻi autoimmune - hiki ke manaʻo ʻia e like me ke kolohe ʻana o kou kino iā ʻoe. Inā makemake ʻoe i ke kōkua e hoʻololi i nā loli i kou ola a i ʻole ke kū ʻana me ke kūlana, e nīnau i kāu kauka e pili ana i nā ala e loaʻa ai ke aʻo ʻana no ke olakino noʻonoʻo. He mea maʻamau ka manaʻo kaumaha a me ke kaumaha, akā ʻaʻole pono ʻoe e hele wale ma waena.

`ʻO ka maʻi Antisynthetase, ka maʻi autoimmune, myositis, ka maʻi māmā interstitial, ka hanana Raynaud, nā autoantibodies, ka ʻeha hui, ka nāwaliwali o ke kino