Kei a koe ēnei tohu? Me ako tātou mō te Adult-Onset Still's Disease (AOSD)!

Ka mamae, ka kirika, ka mamae hoki ō hononga i ētahi wā mō ngā rā? Tērā pea he whero te kiri. Mena kei a koe ēnei tohu, tera pea kei a koe te mea e kōrerohia ana i tēnei rā: Te Mate Pākeke-Tūmau (AOSD). He mate onge tēnei, engari he mea nui kia mōhio koe ki tēnei.

He aha te mate pāwera o te hunga pakeke (AOSD)?

He whakarāpopototanga noa iho, ko te AOSD he mate mumura e pā ana ki te tinana katoa, ka pupuhi, ka mamae hoki ngā hononga . Ka mamae pea ngā hononga, ka mamae ngā uaua, ka puta te kirika puta noa i te rā, me te kiri mākūkū. Hei tāpiri, ka puta anō hoki ētahi atu tohu ā-tinana.

Ko tēnei mate, e kiia nei ko te AOSD, he momo pakeke o te mate Still's disease, (Juvenile Idiopathic Arthritis - JIA) rānei e pā ana ki ngā tamariki. Ko te nuinga o te wā ka pā ki ngā taiohi i waenga i te 16 me te 35 tau te pakeke. Pērā i te mate i roto i ngā tamariki, i ētahi wā ka roa ake i te tau, kātahi ka ngaro, ka puta mai, ka haere tonu rānei i roto i te wā. Ka puta pinepine mai, ka haere tonu mai ngā tohu flares, ka haere mai, ka haere tonu rānei mō te wā roa. Waihoki, he tino ngawari ēnei tohu i ētahi wā, ā, i ētahi wā ka tino kino. Heoi, he pai ngā rongoā hei whakahaere i ngā tohu ina puta mai.

He aha ngā momo matua o tēnei mate?

He rerekē te pānga o te AOSD ki te katoa. He uaua ki te kī tika me pēhea te pānga ki a koe. Engari kua kitea e ngā tākuta e toru ngā huarahi matua e puta ai ngā tohu:

Monophasic AOSD (Monophasic AOSD)

Ko te tikanga o te "Monophasic" ko te puta kotahi noa iho o ngā tohu. Ka roa pea tēnei mō ētahi wiki, marama rānei, engari kāore i te neke atu i te tau. Ka taea e tēnei momo te tīmata ohorere, ā, ka tere hoki te ngaro atu. Whakaarohia, i pāngia tō tātou hoa a Kasun e ēnei tohu me te kirika me te mamae o ngā hononga, ā, i muri i te toru marama ka ora ake ia i te rongoā, ā, kāore ia i hoki mai. Koinei te ingoa o tēnei (Monophasic AOSD).

AOSD Polyphasic (AOSD Polyphasic)

Ko te tikanga o te "Polyphasic" he maha ngā wā ka puta ngā tohu. Ka puta pea ēnei i ētahi wā, i ētahi wā i ia wiki torutoru, i ia marama, i ia tau rānei. Heoi, i roto i te wā, ka poto ake, ka iti ake te kaha o ēnei tohu.

AOSD Mau tonu (AOSD Mau tonu)

Ko te tikanga o te "Mau Pūmau" he tohu kei te haere tonu, he maha rānei ngā wā ka pā mai te mate . Pērā i ngā mate pēnei i te Rūmatoid Arthritis, he nui ake te tūponotanga o tēnei mate (Chronic AOSD) ki te whakararu i ō hononga mō te wā roa.

E kitea ana ngā momo e toru i roto i te ōwehenga ōrite. Heoi, kāore e taea te kī ko tēhea momo i te tīmatanga. I ētahi wā, ahakoa e whakaarohia ana he "monophasic" he "polyphasic" rānei, ka taea e ia te huri hei "chronic" AOSD.

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He aha ngā tohu o te AOSD?

Haunga ngā tohu matua e kitea ana i roto i tēnei mate, kei reira anō ētahi atu tohu noa.

Ngā tohu matua

• Te kirika: Ina kaha te kitea o ngā tohu, ka pāngia te nuinga o te tangata e te kirika e rua ngā wā i te rā , kotahi i te ata, kotahi i te ahiahi. I te nuinga o te wā ka neke ake tēnei kirika i te 39 nekehanga Celsius (102 nekehanga Fahrenheit).
• Ponana kiri: Ka puta mai he ponana māwhero, he rite ki te tae hāmana i te wā e tino pāngia ana e te kirika . Tērā pea ka ngaro atu i te wā e heke ana te kirika. I te tīmatanga ka puta ki te uma, ki ngā ringa, me ngā waewae, engari ka horapa puta noa i te tinana.
• Mamae hononga: He maha ngā tāngata e pāngia ana e te mamae hononga , ā, he tokomaha anō hoki e pupuhi ana, e kōpikopiko ana. Tērā pea ka pā ki ētahi hononga torutoru i te tīmatanga, engari i roto i te wā, ka pā pea tēnei mamae ki ngā hononga puta noa i te tinana.
• Mamae uaua: Tērā pea ka mamae hoki ō uaua , ina koa ka tino teitei te kirika.

Ētahi atu tohu noa

• Korokoro mamae.
• Mamae puku.
• Te ahua o te ngenge nui.
• Ko te mate pōuri he kare o te ora, he kare o te māuiui.

He aha te āhua o te whai AOSD?

Ina hoki, i te tīmatanga, he rite te ahua o te AOSD ki te mate huaketo, ki te makariri noa rānei . He rite tonu ngā tohu pēnei i te kirika, te mamae o te tinana, me te mamae o te korokoro ki ngā mate maha atu. Tērā pea ka tīmata kōrua ko tō tākuta te whakapae mena kāore anō ēnei tohu kia memeha i muri i ngā wiki e rua, e toru rānei.

He aha i puta ai tenei mate AOSD?

Ko te mumura i roto i tō tinana te take o ngā tohu o te AOSD . I te nuinga o te wā, ka puta tēnei mumura i roto i tō tātou pūnaha ārai mate hei whawhai i ngā mate me te whakaora i ngā patunga. Me noho rangitahi noa iho. Engari i roto i ētahi mate, pērā i te AOSD, he raruraru tō pūnaha ārai mate ki tētahi mea , ā, ka puta tonu tēnei mumura ahakoa kāore he mate hei whawhai, he patunga rānei hei whakaora.

Kāore anō kia tino mōhiotia e ngā kairangahau te take o tēnei āhuatanga. Pērā i te Juvenile Idiopathic Arthritis, ka kiia te Adult Still's Disease he " idiopathic ". Ko te tikanga kāore i te mōhiotia te tino take . Te āhua nei ehara i te mea he ira.

Me pēhea te tautuhi i te AOSD?

He rite tonu ngā tohu o te AOSD ki ētahi atu mate. Nā te mea he mate onge, kāore pea ngā tākuta e whakaaro wawe. Nō reira , ka roa pea te wā ki te kimi i te tautuhi tika .

I muri i te arotake i ō tohu me tō hītori hauora, ka whakahau tō tākuta i ngā whakamātautau toto me ngā whakamātautau whakaahua hei ako atu mō tō āhua. Ka taea e ngā whakamātautau pēnei i te hihi-X, te matawai ultrasound rānei te rapu i te mumura me te pupuhi i roto i ō hononga. Ka taea e ngā whakamātautau toto te whakakore i ētahi atu āhuatanga. Mena kei roto i tō whakamātautau toto he taumata tiketike rawa o te ferritin, me te maha o ngā toto toto ma , ka tohu pea ēnei tohu i te AOSD.

He aha ngā maimoatanga mō te AOSD?

He maha ngā momo rongoā ārai-mumura e rongoāhia ana e ngā tākuta mō te AOSD. He rerekē ngā momo rongoā e pai ana mō ia tangata. Tērā pea me whakamātau koe kia kitea ai te mea e pai ana mō ō tohumate. Kia kitea rā anō te mea tika, me haere tonu pea koe ki te tango i te rongoā mō te wā roa, ahakoa kāore he tohumate. Ko reira anake ka taea ai e koe te aukati i te kino haere o te mumura.

Ka pā mai pea ngā pānga taha ki ētahi rongoā mēnā ka roa te whakamahinga. Mēnā kei te tango koe i ēnei rongoā, ka whakarerekētia e tō tākuta ngā rongoā i ētahi wā hei karo i ngā pānga taha.

Ko ētahi o ngā rongoā e whakamahia ana mō te maimoatanga ko:

• Ngā rongoā anti-inflammatory kore-steroidal (NSAID).
• Ngā corticosteroids (ngā steroids hangai) (Ngā corticosteroids - ngā steroids hangai).
• Ngā rongoā ārai-rūmātiki e whakarerekē ana i te mate (DMARDs).
• Ngā rongoā koiora (Biologics).

He pēhea te kino o te AOSD?

I te nuinga o te wā, ka nui ake te pānga o te AOSD ki tō kounga o te oranga i tō hauora mō te wā roa . Arā, ka pāngia pea koe e te mamae me te whakararuraru i ngā mahi o ia rā, engari kāore e tino kino ki tō tinana mō te wā roa.

Heoi, ka taea e ētahi tāngata te whakawhanake i tētahi momo mate rumatiki e ahu whakamua ana, e heke ana te kaha . He nui ake te tūponotanga ka puta tēnei i roto i te AOSD mau tonu i ērā atu momo. Mena he nui te mumura o ō hononga, ā, he roa te wā e mau ana, ka memeha haere. I te memeha haere o te whakamarie e karapoti ana i ō hononga nā te mumura, ka tīmata pea ō hononga ki te neke haere i te wāhi tika. Ka taea e tēnei pupuhi me te hekenga o ngā hononga te arahi ki ngā āhua kino o ō hononga.

He tino onge, ka pāngia hoki ō whekau o roto e ngā mate mumura e pā ana ki te AOSD, pērā i tō ngākau me ō pukahukahu. Ka taea e tēnei te arahi ki ngā raruraru kino atu. Ahakoa kāore pea te AOSD e pā ki tō roanga o te ora, he onge noa iho te mate o ēnei mate tuarua.

He aha ngā raruraru nui ka puta?

Ko ētahi o ngā raruraru onge engari he nui:

• Te mate pāwera o te ngākau.
• Te mate ngakau.
• Te toto totoka o roto o te toto (DIC).
• Te toto toto tiketike o te pūkahukahu.
• Te rerenga wai i roto i te pleural.
• Te mate pūkahukahu interstitial.
• Te mate pukupuku toto totoro (HLH).

Ka taea te whakaora katoa i te AOSD?

Kāore e taea e ngā rongoā te whakaora i te AOSD, engari ka taea e rātou te āwhina ki te pehi i ngā tohu. Mō ētahi tāngata, ka ngaro katoa pea ngā tohu i roto i te wā, ā, kāore e hoki mai. Ka kiia tēnei ko te "whakamaarama," ko te "whakamaarama" rānei o te mate. Ki te tomo koe ki te "whakamaarama," ka taea e koe te whakamutu i te tango i tō rongoā. Engari mō ētahi tāngata, kāore te AOSD e tino memeha. Me tango rongoā tonu pea rātou hei whakahaere i te mumura.

He uaua ki te kī tika he aha te momo mate ka pā mai ki a koe. Heoi, e whakapono ana ētahi tākuta mā ō tohu tōmua ka taea e koe te tohu . Mena ka mamae, ka pupuhi ō hononga i te tīmatanga, he nui ake te tūponotanga ka roa te wā.

Me pēhea tā tātou tiaki i a tātou anō i a tātou e noho tahi ana me te AOSD?

He tokomaha te hunga e noho tahi ana me te AOSD ka taea te noho noa, te noho whakamarie me te rongoā tika . Mō ētahi atu, ka raru rātou i te mamae mau tonu me te ngenge mau tonu, ka pā ki ō rātou oranga o ia rā. Ahakoa kei te raru tonu koe i ngā tohu o te AOSD, tera pea ka pāngia koe e ngā pānga taha o te rongoā e tangohia ana e koe, pērā i te pikinga o te taumaha me te hurihanga o te wairua.

Ina he taumahatanga tonu te ao nā ngā mea kāore e taea te whakahaere, he mea nui ake te tiaki i a koe anō . Mā te moe pai, te kai totika, me te whakakori tinana auau, iti te pānga, ka pai ake tō wairua whānui.

He mate ngaro te AOSD e puta ohorere mai ana, kāore hoki he take e mōhiotia ana. Ina puta tuatahi mai, tera pea ka roa te wā e pāngia ana koe e te mate rerekē. Tērā pea ka roa te wā me te kaha o tō tākuta ki te rapu i te āhua o te mate. Waimarie, ina kitea tō mate, ka taea e koe te tīmata maimoatanga, ā, ka tīmata haere te pai haere.

Ahakoa me whakamātau, me mahi hapa pea kia kitea ai te maimoatanga e tino pai ana māu, ka taea e te nuinga o te tangata te whakahaere i ō rātou tohu me te ārai i ngā raruraru nui o te rongoā . Ahakoa te roa o tō AOSD, ko tō tākuta te hoa pai rawa atu māu ki te whakahaere.

Hei whakamutunga, he karere hei kawe ki te kāinga

• He mate hononga mumura onge te AOSD e pā ana ki te tinana katoa, ā, ka pā ki ngā pakeke.
• Ko te kirika pinepine, te ponana kiri, me te mamae o ngā hononga me ngā uaua ngā tohu matua.
• Kāore i te mōhiotia te tino take o tēnei, engari e whakaarohia ana nā te mumura i puta mai i ngā panonitanga o te mahi a te pūnaha ārai mate.
• Ka roa pea te wā e tautuhia ai te mate, nā te mea he rite ngā tohu ki ētahi atu mate.
• Ka taea e te rongoā te āwhina i te whakahaere i ngā tohumate, ā , mō ētahi, ka taea te whakaora katoa i te mate.
• Mā te maimoatanga tika me te tiaki pai i a koe anō, ka taea e te nuinga o te tangata te noho i te oranga noa.
• Ki te pā mai ēnei tohu ki a koe, me toro atu ki te tākuta, me te rapu tohutohu . Kaua e manukanuka, kei reira ngā otinga mō ngā mea katoa.

Kia ora pai koe!

Te mate a te pakeke, te mate pukupuku o te uma, te kirika, te ponana kiri, ngā mate pūnaha ārai mate, te maimoatanga