Kei te pēhia koe e te āhua nei kei te whawhai mai tō tinana ki a koe mai i roto? Tērā pea he mate pāwera tēnei!

Kei te rongo koe i ētahi wā kei te whakararuraru tetahi mea i a koe mai i roto? Tērā pea he mamae noa iho ō hononga, he poto te manawa, he kite rānei koe i ētahi huringa iti i roto i tō kiri. Kaua e whakakore noa i ēnei mea hei mea e tupu ana. I ētahi wā he kōrero uaua ake kei muri i a rātou. I tēnei rā ka kōrero tātou mō tētahi mate onge engari ka taea te whakahaere, ko te Antisynthetase Syndrome.

He aha te Antisynthetase Syndrome? He māmā noa iho...

He tino onge te mate Antisynthetase Syndrome. Ko te mea ka puta i tēnei ko te mumura puta noa i te tinana, arā, he mate pēnei i te mumura. He mate pūnaha ārai mate tēnei. Inaianei kei te pātai koe he aha te mate pūnaha ārai mate.

Whakaarohia, he pūnaha ārai mate tō tō tātou tinana. He rite ki tētahi ope taua e tiaki ana i tō tātou whenua. Ka tiaki ngā pūtau me ngā whekau o tēnei pūnaha i a tātou mai i ngā iroriki, ngā huakita, me ngā huaketo e puta ai ngā mate. Heoi, i roto i tētahi mate ārai mate, ka hē te pūnaha ārai mate nei. E whakaaro ana ia ko ō tātou ake pūtau me ngā kiko hauora he "hoariri" ā, ka tīmata te whakaeke i a rātou. He rite ki tō tātou ake ope taua e whakaeke ana i ō tātou ake kāinga. Ahakoa ngā tākuta, kāore tonu e taea te mārama he aha tēnei e puta ai.

I roto i te mate Antisynthetase Syndrome, ka pāngia e te pūnaha ārai mate ngā wāhanga e whai ake nei o te tinana:

• Ngā uaua
• Ngā hononga
• Ngā pūkahukahu
• Kiri
• Ngā uaua toto

Ko te mea nui ko te toro atu ki te tākuta mēnā ka kite koe i tētahi mamae hononga hou, i tētahi panoni kiri, i tētahi uauatanga rānei ki te manawa, me te kore e aro noa ki tēnā.

E hia te onge o tēnei mate?

He mate tino onge tēnei (Antisynthetase Syndrome). He uaua ki te kī tika e hia ngā tāngata e pāngia ana e tēnei mate. Nā te mea he iti noa iho ngā kēhi e pūrongohia ana i ia tau. I ētahi wā, he rite ēnei tohu ki ngā tohu o ētahi atu mate, ā, kāore pea e kitea.

He aha ngā tohu o te mate Antisynthetase?

Ko ngā tohu ka puta ake i a koe, ka whakawhirinaki ki te pai o te mahi a tō pūnaha ārai mate i roto i tō tinana me te kino o tana kino ki a ia.

He maha ngā wā, ka pāngia te hunga whai mate pāwera e te mate Antisynthetase, ā, ka kitea ngā tohu e hono ana ki ētahi atu mate. Me titiro tātou ki ēnei tohu:

• Myositis: He mumura roa tēnei o ngā uaua. Ka mamae, ka ngoikore hoki ngā uaua.Ka tupu. Whakaarohia, kei te ngoikore rawa koe, kāore e taea e koe te hiki i ō ringa. I ētahi wā ka ngoikore ngā uaua o tō korokoro, ka uaua ai te horomi i te kai me te inu. Ka kiia tēnā he dysphagia .

• "Ngā ringaringa o te mīhini": Kāore ianei tēnei i te ingoa tauhou? Koinei te wāhi e matotoru ai, e ngatata ai te kiri o ngā nikau me ngā taha o ngā maihao. He rite ki ngā ringaringa o te mīhini e mahi ana me te hinu me te hinu i te rā roa.

• Mate pūkahukahu interstitial (ILD): Koinei te wā e pakaru ai te kiko i waenganui i ngā pēke hau iti (alveoli) i roto i ō tātou pūkahukahu me ngā oko toto e karapoti ana i a rātou. Ka puta pea he poto o te manawa (dyspnea) , he maremare maroke , he ngenge , me te mamae o te uma . He rite ki te hinga i runga i te arawhata.

• Te mate pūkahukahu: Koinei te wā e pāngia ai ngā hononga e rima, neke atu rānei, i te wā kotahi. Ka puta te mamae, te pakari, me te pupuhi i ngā hononga . Tērā pea ka pakari koe ina ara ake koe i te ata.

• Te āhuatanga o Raynaud (te mate tuarua o Raynaud): I tēnei āhuatanga, ka huri te tae o ngā pito o ngā maihao me ngā matimati (ka mā, kātahi ka kikorangi, kātahi ka whero) ā, ka ngoikore, ina koa ka pāngia e te makariri. He rite ki ō maihao e ngoikore ana i muri i te tango i te poraka hukapapa mai i te pouaka tio.

• Te kirika: Ka pāngia ētahi tāngata e te kirika, engari kāore he mate i roto i ō rātou tinana. Ko te tikanga o tēnei ka piki te pāmahana o te tinana nā te mahi a te pūnaha ārai mate.

He aha te take o te mate Antisynthetase?

Kāore anō kia mōhiotia te tino pūtake o tēnei mate . Engari kua kitea e ngā tākuta he maha ngā tāngata whai mate nei he momo paturopi motuhake kei roto i ō rātou toto. E tohu ana ēnei paturopi kei te whakaeke tō rātou pūnaha ārai mate i ō rātou ake tinana, kaua ki te tiaki i a rātou. Ka karangatia ēnei e mātou ko (autoantibodies) , ko tōna tikanga he "autoantibodies".

Nā, tirohia, ko ngā paturopi he pūmua e tiaki ana i a tātou ina uru mai tetahi mea kino ki roto i ō tātou tinana. He rite ki ngā tohu matū e whakamahia ana e tō tātou pūnaha ārai mate. Ka tohu ēnei paturopi i ngā whakaeke kino pēnei i te huakita me te huaketo hei "mōrearea". Engari ki te mea he mate pūnaha ārai mate tōu, ka whakaputa hē tō pūnaha ārai mate i ngā paturopi ka tukuna e rātou hei whakaeke i ngā kiko hauora.

Ko te hunga whai mate Antisynthetase Syndrome he maha ā rātou autoantibodies e whakaeke ana i ngā whākōkī e kiia nei ko ngā tRNA synthetases . He mea nui, he whai hua hoki ēnei tRNA synthetases e hiahiatia ana e ō tātou tinana kia mahi tika ai.

He mea ngaro tonu te take e tīmata ai tā tātou pūnaha ārai mate ki te hanga i ēnei autoantibodies. Heoi, ki te mea kei roto i ō toto ēnei autoantibodies, he tino tūponotanga kei a koe te mate Antisynthetase Syndrome.

He pēnei te āhua, whakaarohia te tangata e tahu ana i ngā pahū ahi i mua i tō whare. Ina titiro koe i te ata i muri mai, kei reira ngā kongakonga pahū ahi me ngā ara kua wera e marara ana i runga i te whenua. Kāore pea koe e mōhio ko wai i tahu i ngā pahū ahi, nōnahea i tahuna ai, he aha rānei. Engari he taunakitanga kei reira i puta ai. I roto i te Mate Antisynthetase, kaua ko te haruru e rangona ana e koe ina tahu koe i ngā pahū ahi me te mataku o ngā kurī, engari ka pāngia koe e ngā tohu i kōrerohia e tātou i mua ake nei.

Ko wai te hunga tino mōrearea ki te pangia e tēnei mate?

Ka taea e te tangata katoa te pāngia e te mate Antisynthetase. Heoi, ko ngā wāhine me te hunga neke atu i te 50 tau te pakeke ka nui ake te tūponotanga ka pāngia e tēnei mate. E rua pea te tūponotanga ka pāngia ngā wāhine e tēnei mate i ngā tāne.

Me pēhea te tautuhi i te mate Antisynthetase?

Ka tātaritatia tēnei mate e te tākuta i runga i ō tohumate, i te whakamātautau tinana, me ētahi atu whakamātautau.

Me toro atu pea koe ki tētahi tākuta tohunga mō ngā mate pūnaha ārai mate, e kiia nei ko te tākuta rumatiki . Māna koe e tirotiro, ka pātai atu hoki mō ō tohumate. Me kōrero e koe ki te tākuta he aha ō tohumate, nōnahea koe i kite tuatahi ai, me te mea kei te kino ake aua tohumate.

Hei tāpiritanga, me whai koe i ētahi whakamātautau hei whakaū kei a koe te Antisynthetase Syndrome, me te whakakore i ētahi atu āhuatanga ka puta ai ngā tohu rite.

He aha ngā whakamātautau e whakamahia ana hei tautuhi i te mate?

Ehara tēnei i te whakamātautau kotahi hei whakaū i te mate. He wāhanga tēnei o te tukanga e kiia nei ko te tātaritanga rerekē . Ko te tikanga ka whakahaerehia e tō tākuta ētahi whakamātautau hei kimi i te pūtake o ō tohu, hei whakakore i ētahi atu āhuatanga, ā, hei whakamutunga ka tautuhia koe he mate Antisynthetase Syndrome. Ko ētahi o ngā whakamātautau ka mahia pea māu ko:

• Ngā whakamātautau toto: Hei tirotiro i te mahi a tō pūnaha ārai mate, me te kite mēnā he autoantibodies kei a koe, he tohu tēnei o te Antisynthetase Syndrome. Ka taea hoki e ngā whakamātautau toto te tirotiro i te pikinga o ngā taumata o ētahi whākōkī ka tukuna ki roto i te toto ina pakaru ngā uaua.
• Te tātari mimi: Hei tirotiro i te mahi a te whatukuhu me te tirotiro mō ngā mate pāwera, ngā raruraru rānei i roto i te mimi e pā ai ō tohumate.
• Ngā whakamātautau mahi a ō pukahukahu: Tirohia mēnā kei te pāngia ō pukahukahu, tō pūnaha manawa rānei.
• Ngā matawai tomography rorohiko (CT) me ētahi atu whakamātautau whakaahua: Tangohia ngā whakaahua o ngā kiko me ngā whekau i roto i te tinana.
• (Whakamātautau Hiko - EMG):Tirohia te mahi a ngā uaua.
• He matawai whakaahua aukume (MRI) o ngā uaua e pāngia ana: hei tirotiro mō te mumura.
• He whakamātautau te koiora e tango ana i tētahi wahi iti o te uaua, o te kiko rānei o te pukahukahu.

Me pēhea te rongoā i te mate Antisynthetase?

Kāore he rongoā mō te mate Antisynthetase Syndrome. Heoi, ka taea e tō tākuta te āwhina i a koe ki te kimi i tētahi huinga maimoatanga hei āwhina i te whakahaere i ō tohumate, te whakaiti i ōna pānga ki tō oranga o ia rā, me te whakaiti i te kino ki ō whekau.

Ko te momo maimoatanga e hiahiatia ana e koe ka whakawhirinaki ki te wāhi o ō tohu me te kaha o aua tohu. Anei ētahi o ngā maimoatanga e whakamahia whānuitia ana:

• Corticosteroids: He rongoā ēnei hei whakaiti i te mamae me te pupuhi. He maha ngā wā ka tohua e ngā tākuta ngā corticosteroids me ngā rongoā e kiia nei ko ngā immunosuppressants.
• Ngā rongoā ārai mate: Ka mahi ēnei rongoā mā te aukati i tō pūnaha ārai mate kei whakaeke i ngā pūtau me ngā kiko hauora. Ko te momo rongoā e hiahiatia ana e koe ka whakawhirinaki ki ngā whekau e pāngia ana. Ko ngā rongoā ārai mate e tino kitea ana ko te methotrexate, te azathioprine, me te mycophenolate . Tērā pea ka hiahia koe ki te cyclophosphamide, te rituximab, te tacrolimus rānei .
• Te Maimoatanga mō te Mate Pūkahukahu Interstitial (ILD): Tērā pea ka hoatu he rongoā ki a koe hei whakangāwari i te manawa, te rongoā hāora rānei mēnā e hiahia ana koe ki te hāora tāpiri. Me mahi tahi koe me te tākuta pūkahukahu hei whakahaere i ō raruraru manawa.
• Whakaora tinana: Ka taea e te kaiwhakaora tinana te āwhina i a koe ki te whakapai ake i te whānuitanga o te nekehanga o tō tinana. Ka taea e rātou te āwhina ki te whakahaere i ngā tohu e pā ana ki te uaua, te tūtohu rānei i ngā mahi manawa hei whakapakari i ō pukahukahu. Tērā pea me whai whakaora pūkahukahu koe.

He aha ngā mea ka tupu mēnā kei a au te mate Antisynthetase?

Ka taea e tō tākuta te āwhina i a koe ki te kimi i tētahi huinga maimoatanga hei whakahaere i ō tohumate.

He mate mau tonu te mate Antisynthetase. Ko te tikanga me whakahaere e koe ngā tohu mō te wā roa (tērā pea mō tō oranga katoa).

He mate mate (Antisynthetase Syndrome)?

Kāore te mate Antisynthetase Syndrome e mate i te nuinga o te wā . Ko te roanga o te oranga o te hunga e ora ana me tēnei mate kāore e tino pāngia. He maha ngā tāngata e noho ana me tēnei mate mō te toenga o ō rātou oranga, engari ka taea e rātou te whakahaere i ō rātou tohu mā te rongoā.

Heoi, ki te pāngia koe e te mate pūkahukahu interstitial kino, e tētahi atu raruraru rānei e pā ana ki tō pūnaha manawa, ka mate pea koe. Engari he tino onge. Mā tō tākuta koe e kī atu ki ngā mea hei tumanako atu, me ngā tohu rerekē pea e tohu wawe ana i ngā raruraru manawa kino.

Ka taea e au te ārai i te whanaketanga o te mate Antisynthetase?

Kāore he huarahi hei ārai i te mate Antisynthetase, nā te mea kāore ngā tohunga i te tino mōhio he aha te take, he aha rānei te mea e whakanui ai i te mōrearea.

Āhea ahau me toro atu ki te tākuta?

Ki te puta mai he tohu hou ki a koe, inā koa ka kino haere, me toro atu ki te tākuta . Ki te mea kei te whakaaro koe kāore ō tohu e whakahaeretia ana kia rite ki tō mua i te wā i rongoatia ai koe, ki te mea rānei kei te uaua haere ō mahi o ia rā i ō tohu, me kōrero ki tō tākuta.

Āhea ahau me haere ki te rūma whawhati tata?

Mena kei a koe tētahi o ēnei tohu, haere tonu ki te rūma whawhati tata, waea atu rānei ki te 911 (ki tō nama whawhati tata rānei) :

• Te uaua ohorere ki te manawa.
• Te poto rawa o te manawa (te āhua kāore e taea te manawa).
• He kikorangi te kiri, ngā ngutu, ngā maikuku rānei (cyanosis).
• Te mamae o te uma, te taumaha rānei.

He aha ngā pātai me pātai atu e au ki taku tākuta?

• Kei a au te mate Antisynthetase, tētahi atu mate pūnaha ārai mate rānei?
• He aha ngā momo whakamātautau me mahi e au?
• He aha ngā maimoatanga pai rawa atu hei whakahaere i aku tohumate?
• Me whai rongoā tinana, me whai whakaora manawa rānei ahau?
• Kia pēhea te mōrearea o ngā raruraru nui o te pukahukahu ki ahau?

He aha ētahi atu ingoa mō te mate Antisynthetase?

I ētahi wā ka karangatia e ngā tākuta te mate Antisynthetase ki ētahi atu ingoa. Hei tauira:

• (Te mate ngoikore o te Antisynthetase)
• (mate AS)
• (Te mate Anti-Jo1)

He ingoa rerekē ēnei katoa mō te āhua kotahi.

Hei whakamutunga, ngā mea hei maumahara (Karere hei tango ki te kāinga)

He āhuatanga onge te mate Antisynthetase Syndrome, e whakaeke ana tō pūnaha ārai mate i tō tinana, kaua e tiaki i a koe. Kōrero ki tō tākuta mō ngā maimoatanga hei āwhina i te whakaiti i te pānga o ō tohu ki tō oranga o ia rā.

He tino whakarihariha te noho me te mate pūnaha ārai mate – ka rite ki te mea kei te tinihanga tō tinana i a koe. Mena kei te hiahia āwhina koe ki te urutau ki ngā huringa o tō ao, ki te aro atu rānei ki te mate, pātai atu ki tō tākuta mō ngā huarahi hei tiki tohutohu hauora hinengaro. He mea noa te pouri me te pouri, engari kāore koe e hiahia ki te pā ki tēnei mate ko koe anake.

`Te Mate Antisynthetase, te mate pūnaha ārai mate, te myositis, te mate pūkahukahu interstitial, te āhuatanga o Raynaud, ngā autoantibodies, te mamae o ngā hononga, te ngoikore o te uaua