Kei te mōhio koe ki te Lupus (Systemic Lupus Erythematosus - SLE) ? Me kōrero tāua!

Ka pāngia koe e te ngenge, te mamae o te tinana, te mamae o ngā hononga, te kiri rānei e te ponana? Mēnā kāore i te kotahi, i te rua rānei ngā wā ka pāngia koe e ēnei āhuatanga i te wā kotahi, engari he maha ngā wā, tera pea he mate e kiia nei ko te lupus te take. Kaua e manukanuka, ahakoa te ahua nui o tēnei ingoa, he āhuatanga ka taea te whakahaere i te nuinga o te wā mēnā ka mōhiotia tika koe, ā, ka whiwhi maimoatanga tika. I tēnei rā, ka kōrero tātou mō te lupus i roto i tētahi huarahi māmā ka taea e koe te mārama.

He aha te Lupus? Kia mārama tātou.

Ki te kī māmā noa, he mate te lupus e puta mai ana i te hapa o te pūnaha ārai mate o tō tātou tinana. I te nuinga o te wā, ka tiakina tātou e tō tātou pūnaha ārai mate mai i ngā mate me ngā huakita. Engari ko te mea e tupu ana i roto i te tinana o te tangata whai lupus ko te whakaeke hē a tēnei pūnaha ārai mate i ngā pūtau me ngā kiko hauora o tōna ake tinana. Whakaarohia, ko te mea e tupu ana i konei he rite ki te ope taua e tiaki ana i tō tātou whenua, e whakaeke hē ana i ngā tāngata o tō tātou ake whenua. Ka kiia tēnei e ngā tākuta he 'mate ārai mate '.

Ina whakaeke te pūnaha ārai mate i tēnei ara, ka puta te mumura , arā, te pupuhi, te whero, me te mamae, ki ngā wāhanga rerekē o te tinana. Ka pā tēnei ki tētahi wāhanga o te tinana. Hei tauira:

• Tō kiri
• Toto
• Ngā Hononga
• Ngā whatukuhu
• Roro
• Ngākau
• Ngā pūkahukahu

He mea tino nui kia toro atu ki te tākuta mēnā ka kite koe i tētahi mamae hou, i tētahi ponana kiri, i ngā huringa rānei o tō kiri, makawe, kanohi rānei.

He aha ngā momo matua o te lupus?

Ina kōrero ngā tākuta mō te lupus, ka karangatia e rātou ko te "Systemic Lupus Erythematosus (SLE)". Koinei te momo lupus tino noa . Ko te tikanga o te "SLE" ka pā te mate ki tō tinana katoa. He maha atu anō ngā momo:

• Lupus erythematosus kiri: I roto i tēnei momo lupus, ko tō kiri anake ka pā ki tēnei mate .
• Lupus i puta mai i te rongoā: Ka taea e ētahi rongoā te whakaputa i ngā tohu lupus hei pānga taha. Heoi, he wā poto noa iho tēnei . Ko te tikanga ka memeha pea ngā tohu i muri i te whakamutu i te rongoā.
• Lupus pēpi hou: He tino onge tēnei. I ētahi wā ka pāngia ngā pēpi hou e te lupus. Ehara i te mea ka pāngia ngā pēpi katoa e te lupus e ngā whaea, engari tera pea he iti noa te mōrearea.

He aha ngā tohu o te lupus?

He mate te Lupus e puta mai ana i ngā huarahi rerekē. Ko te tikanga he rerekē ngā tohu i waenga i te tangata me te tangata , ā, he rerekē anō hoki te kaha o te mate. He tino kino ngā tohu o ētahi tāngata, ko ētahi he ngawari ake ngā tohu.

Ko ngā tohu o te lupus kāore e mau tonu.Ka haere mai, ka haere atu. Ka kiia e mātou ngā wā ka piki ake ngā tohu he "whakapūtanga." I roto i ēnei wā, ka tino kino ngā tohu, ā, kāore e taea e koe te mahi i ō mahi o ia rā. Tērā anō hoki ngā wā ka iti haere, ka kore rānei he tohu. Ka kiia ēnei ko te "whakamāmā".

I te nuinga o te wā ka puta haere ngā tohu. I te tīmatanga, kotahi, e rua rānei ngā tohu ka puta, engari i muri mai ka puta mai ētahi atu tohu, ka rerekē rānei ngā tohu o mua.

Anei ētahi o ngā tohu tino kitea:

• Mamae hononga, mamae uaua, mamae uma (ina koa i te wā e manawa hōhonu ana)
• Ānini
• He ponana kiri (he ponana āhua pūrerehua e rere ana puta noa i ngā paparinga me te ihu i ngā taha e rua o te mata - ka kitea te "ponana pūrerehua")
• Kirika
• Te ngaro o te makawe
• Ngā mate waha
• Te ngenge mau tonu (te ngenge tonu)
• Te uaua ki te manawa ((Dyspnea))
• Ngā repe pupuhi
• Te pupuhi o ngā ringa, ngā waewae, te mata rānei
• Pōhēhētanga
• Ngā toto totoka

Ka taea e te Lupus te whakararu i ētahi atu raruraru hauora, pēnei i:

• Te aro ki te hihi o te rā ( te aro ki te hihi o te rā)
• Kanohi maroke
• Te pouri, ētahi atu raruraru hauora hinengaro rānei
• Ngā mate haurangi ('Hōngongoi')
• Te hekenga o te hemoglobin i roto i te toto (anemia)
• Te mate a Raynaud (te mā, te kikorangi o ngā maihao me ngā matimati i te rangi makariri)
• Te osteoporosis (te angiangi o ngā wheua)
• Mate ngakau
• mate whatukuhu

He aha te take o te lupus?

Kāore anō kia mōhiotia e ngā tohunga te tino pūtake o te lupus , engari kua kitea e ngā rangahau ka taea e ētahi mea te whai wāhi ki te whanaketanga o te lupus.

• Ngā āhuatanga ira: Ka nui ake te tūponotanga ka pāngia koe e te lupus mēnā he rerekētanga (ngā whakarerekētanga ira) kei roto i ō ira. Ko te tikanga, mēnā kei roto i tō whānau tētahi o te mate, he iti noa te tūponotanga ka pāngia anō hoki koe e te lupus.
• Ngā homoni: E whakaarohia ana ko te urupare a te tinana ki ētahi homoni, inā koa ko te estrogen, he wāhi nui ki te whanaketanga o te lupus. Koia te take he nui ake te kitea o te lupus i roto i ngā wāhine.
• Ngā āhuatanga taiao: Ka pā pea ngā mea kei te taiao e noho ana koe, hei tauira, te parahanga o te hau me te pānga o te rā ki tō tupono ki te mate lupus.
• Tō hītori hauora: Mena he kaipaipa koe, he nui te ahotea, he mate pūnaha ārai mate rānei tōu, ka piki ake pea tō tupono ki te whakawhanake i te lupus.

Ko wai kei te nui ake te mōrearea ki te whakawhanake i te lupus?

Ka taea e te tangata katoa te pāngia e te lupus, engari he nui ake te mōrearea o ētahi rōpū:

• Ngā Wahine: Tērā pea ko ngā wāhine i waenga i te 15 me te 44 tau te pakeke.
• Ngā tāngata mangu.
• Ngā Pāniora.
• Ngā Āhia (nō tēnei rōpū anō hoki mātou).
• Ngā Taketake o Amerika, ngā Taketake o Alaska, me ngā Iwi Taketake.
• Ngā tāngata o Te Moana-nui-a-Kiwa.
• Ngā tāngata he mate lupus tō tētahi o ō rātou mātua.

Me pēhea te tātaritanga o te lupus?

He uaua pea te tātaritanga i te lupus i ētahi wā. Nā te mea he maha ngā wāhanga rerekē o te tinana e pāngia ana, ka rerekē rawa ngā tohu. Ka tātaritangahia e te tākuta te lupus mā te tirotiro tinana me te mahi i ētahi whakamātautau .

Ka whakarongo pai te tākuta, te nēhi rānei ki ō tohumate. Kōrerotia ngā mea katoa e mōhio ana koe mō te wā i tīmata ai koe ki te pāngia e ngā tohumate, ngā huringa i kitea e koe, me ngā mate o mua i pā ki a koe me ngā rongoā e tangohia ana e koe i tēnei wā.

Kaua e wehi ki te kōrero ki tō tākuta i tētahi mea e rerekē ana ki a koe, ahakoa he mea iti noa iho. Kāore he tangata e mōhio ana ki tō tinana i a koe anō.

He aha ngā whakamātautau e mahia ana hei tautuhi i te lupus?

Kāore he whakamātautau kotahi hei whakaū kei a koe te lupus. He tikanga noa iho te whakamahi a ngā tākuta i te "taataritanga rerekē" hei whakakore i ētahi atu mate . Ko te tikanga tēnei ka mahia e rātou ētahi whakamātautau hei kimi i te take o ō tohumate, hei whakarite hoki kāore he take o ētahi atu mate i mua i te whakatau kei a koe te lupus. Ko ētahi o ngā whakamātautau ka taea te whakamahi mō tēnei ko:

• Ngā whakamātautau toto: Ka tirohia e ēnei te mahi a tō pūnaha ārai mate, mēnā he mate pāwera koe, he mate pēnei i te anemia, he iti rānei te maha o ngā pūtau toto.
• Te tātari mimi: Ka āwhina tēnei ki te tirotiro i tō mimi mō ngā tohu o te mate urutā, o ētahi atu āhuatanga hauora rānei.
• Whakamātautau paturopi ā-karihi (ANA): Ka whakamātauhia tēnei mō ngā paturopi. Ko ngā paturopi he tohu pūmua e whakaatu ana i te hītori o te whawhai a te tinana ki te mate. He nui ngā taumata o ēnei paturopi ANA e te nuinga o te hunga whai lupus. E whakaatu ana tēnei he kaha rawa te pūnaha ārai mate.
• Kohikohi kiri, kohikohi tākihi rānei: I ētahi wā ka tangohia he wahi kiko iti mai i te kiri, i te tākihi rānei, ka tirotirohia i raro i te karu hiko hei tirotiro mēnā kua pakaruhia e te pūnaha ārai mate.

He aha ngā maimoatanga mō te lupus?

Ka tūtohu tō tākuta i tētahi maimoatanga mō te lupus hei whakahaere me te whakahaere i ō tohumate . Ko ngā whāinga matua i konei ko:

• Te whakaiti i te kino ki ngā whekau o te tinana.
• Te whakaiti i te pānga o te lupus ki tō oranga o ia rā.
• Te aukati i ngā putanga o te mate pukupuku.
• Te whakaiti i te kaha o ngā tohu i ngā wā e kaha haere ana te mate.

He maha ngā tūroro lupus e hiahia ana ki te whakakotahitanga o ngā rongoā maha.Tērā pea ka hiahia koe ki ētahi o ngā rongoā e whai ake nei:

• Hydroxychloroquine: He rongoā tēnei nō roto i tētahi akomanga e kiia nei ko te rongoā ārai-rūmātiki whakarerekē-mate (DMARD). Ka āwhina i te whakamamae i ngā tohumate lupus me te whakahaere i te haere whakamua o te mate.
• Ngā rongoā anti-inflammatory kore-steroidal (NSAID): He rongoā kore-steroidal (OTC) ēnei e wātea ana hei whakaiti i te mamae me te mumura (pupuhi). Mā tō tākuta koe e kī ko tēhea momo NSAID e tika ana māu me te roa o te wā me tango e koe. Kaua e tangohia ēnei mō ngā rā neke atu i te 10 i te wā kotahi me te kore he tohutohu a tō tākuta.
• Corticosteroids: He rongoā kaha ēnei e tohua ana e te tākuta hei whakaiti i te mumura. Ko te Prednisone he corticosteroid e whakamahia whānuitia ana mō te lupus. Ka taea te hoatu hei pire, hei werohanga rānei ki roto i te hononga.
• Ngā rongoā ārai mate: Ka mahi ēnei rongoā mā te whakaiti me te whakahaere i te mahi a tō pūnaha ārai mate, ka āwhina i te aukati i te kino o te kiko me te mumura.

Haunga ēnei momo rongoā matua, me whai maimoatanga motuhake pea koe mō ngā tohu motuhake kei a koe, mō ētahi atu raruraru hauora rānei i puta mai i te lupus (hei tauira, te anemia, te toto toto tiketike, te angiangi o ngā wheua).

He aha ngā mea ka taea e koe te tumanako mēnā he lupus tōu?

He mate "mau tonu" te Lupus mō te wā katoa . Ko te tikanga me aro atu koe ki ngā tohumate o te lupus, me te whakahaere hoki i a koe anō puta noa i tō oranga.

He tino uaua te matapae i te mate Lupus. Ko te tikanga, ka rerekē pea te pānga ki a koe i ia wā, i ia wā. Nō reira, me toro atu koe ki tō tākuta i ia wā, kia aroturukihia ai ngā panoni o ō tohumate.

I a koe e ako ana ki te noho me te lupus, me mahi tahi koe me tētahi tīma tākuta . Mā tō tākuta whānau (kaiwhakarato tiaki tuatahi) e tūtohu ngā tohunga e hiahiatia ana e koe. I te nuinga o te wā, ka kite koe i tētahi tākuta rumatiki — he tākuta e tohunga ana ki te tātaritanga me te rongoā i ngā mate pūnaha ārai mate. Ko ngā tohunga kē atu e hiahiatia ana e koe ka whakawhirinaki ki ō tohu me te pānga ki tō tinana.

Ka taea te whakaora katoa i te lupus?

Engari, kāore anō kia kitea he rongoā mō te lupus i tēnei wā . 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, hei āwhina hoki i a koe ki te whakatutuki i tētahi wā e murua ai ō tohumate — he wā kāore he tohumate, he iti noa iho rānei.

Ka taea te ārai i te lupus?

Nā te mea kāore anō ngā tohunga kia tino mōhio he aha te take o te lupus, kāore he huarahi hei ārai i tēnei . Mena he lupus tētahi o ō mātua, kōrero ki tō tākuta mō tō mōrearea.

Me pēhea te ārai i te putanga mai o te lupus?

Ahakoa kāore e taea te ārai i te lupus, he maha ngā mea ka taea e koe te mahi hei whakaiti me te ārai i ngā putanga mai o te mate. Kei roto i tēnei ko te karo i ngā mea ka kino ake ai ō tohu.

• Āraia te pā ki te rā: Mō ētahi tāngata, ka kino ake ngā tohu o te lupus i te roa o te pā ki te rā. Nō reira, whakawhāitihia tō wā ki waho i ngā wā tino pīrahi o te rā (i waenganui i te 10 i te ata me te 4 i te ahiahi). Ki te haere koe ki waho, mauria he hāte ringaringa roa, he pōtae, me ngā kākahu tiaki rā. Whakamahia he hinu ārai rā me te SPF o te 50 neke atu rānei .
• Kia kaha tonu: Ka uaua te neke, te whakakorikori rānei i ngā hononga i ētahi wā. Heoi, ko te nekehanga mārie me te whakakorikori tinana ngā huarahi pai hei whakaiti i ngā tohu pēnei i te mamae me te pakari. He huarahi pai te hikoi, te eke pahikara, te kaukau, te yoga, me te tai chi hei whakakorikori i tō tinana me te kore e nui rawa te pēhanga ki ō hononga. Pātai atu ki tō tākuta mō ngā whakakorikori tinana e haumaru ana māu.
• Kia nui te moe, kia tiakina hoki tō hauora hinengaro: He taumahatanga pea te noho me te lupus i ētahi wā. Mā te nui o te moe (7-9 hāora mō te pakeke) me te whakaiti i te ahotea ka āwhina i ētahi tāngata ki te karo i ngā whakaekenga ohorere. Ka taea e te tohunga hinengaro, e te kaitohutohu hauora hinengaro rānei te āwhina i a koe ki te whakawhanake i ngā tikanga whakatau i te ahotea.

Āhea ahau me toro atu ki te tākuta?

Ki te puta he tohu hou ki a koe, ki te kite rānei koe kei te huri haere ō tohu, me toro atu ki te tākuta tonu. Ahakoa ngā huringa iti o ō tohu, he mea nui tonu.

Ki te mea kei te whakaaro koe kāore tō maimoatanga o nāianei e whakahaere i ō tohumate lupus, kōrero ki tō tākuta . Ki te mea kei te piki haere ō tohumate, kei te kino haere rānei, kōrero ki tō tākuta. Ka taea e tō tākuta te āwhina i a koe ki te whakarerekē i tō maimoatanga ina hiahiatia.

Mēnā he āhuatanga ohorere, arā, ki te pāngia koe e ēnei tohu, haere tonu ki te hōhipera, waea atu rānei ki te 1990:

• Ki te kore e taea e koe te manawa.
• Mena he mamae nui.
• Ki te whakaaro koe kei te pāngia koe e ngā tohu o te mate ngakau.

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

Ina kite koe i tētahi tākuta, he mea pai kia pātai koe i ēnei pātai:

• He lupus tōku, he mate pūnaha ārai mate rānei?
• He aha ngā momo rongoā e hiahiatia ana e au?
• Kia pēhea te auau o taku kitenga i a koe ('ngā whakaritenga whai muri')?
• Me toro atu rānei ahau ki ētahi atu tohunga?
• Ka taea e koe te kōrero mai ki ahau mō ngā rōpū tautoko, ngā ratonga hauora hinengaro rānei hei āwhina i ahau?

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

He āhuatanga whakarihariha, he āhuatanga ngoikore hoki te Lupus i ētahi wā. Ehara i te mea ngāwari te noho me te mamae, te mumura, me te kore whakamarie puta noa i tō tinana. Engari, kaua e wareware ki te mihi ki a koe anō . He mahi uaua te noho me te mate pūmau, nō reira me mihi koe mō te kaha i whakapaua e koe ki te whakahaere i ō tohumate i ia rā.

Ki te whakaaro koe he mea āwhina te kōrero ki tētahi mō ō whakaaro me ō kare ā-roto, pātai atu ki tō tākuta mō ngā ratonga hauora hinengaro me ngā rōpū tautoko.

Kaua e wehi ki te kōrero ki tō tākuta me te pātai atu. Ahakoa ngā panonitanga iti o ō tohumate, tera pea he tohu kei te rerekē te pānga o te lupus ki a koe. Kia maumahara, ki te mea kei te whakaaro koe kāore tetahi mea e tika ana i roto i tō tinana, ko koe te kaiwhakawā pai rawa atu.

Lupus , SLE, ngā mate pūnaha ārai mate, mamae hononga, ponana kiri, maimoatanga lupus, ngā tohu lupus