He ngoikore tō kiri me ō uaua? Me kōrero tātou mō te dermatomyositis!

Ka pā mai ētahi wā he ponana kiri rerekē ki a koe? Kei te ngoikore hoki ō uaua? Me mōhio anō pea koe ki tētahi mate e kiia nei ko te dermatomyositis. He mate onge tēnei, engari he mea tika kia mōhio koe.

He aha te mate kiriuhi?

He whakarāpopototanga noa iho, he mate onge te dermatomyositis e ngoikore ai ō uaua, ā, ka puta he ponana e rite ana ki te ekisema . Nō roto i tētahi rōpū mate nui ake e kiia nei ko te myopathy. Ko te tikanga ka pā ki ngā uaua. I ētahi wā, ki te kaha rawa , ka pā ki te manawa me te horomi. Whakaarohia, ko ō tātou uaua te mea e neke ai tātou, nō reira, he uaua rawa ina pakaru.

Ko te Dermatomyositis tētahi momo o tētahi atu mate uaua e kiia nei ko te polymyositis. Heoi, i tēnei wā, haunga ngā uaua, ka pāngia hoki te kiri. Koia te take i tāpirihia ai te kupu 'derma' (e pā ana ki te kiri) ki te ingoa.

Mena kei a koe tētahi o ēnei tohu, he mea nui kia toro atu ki te tākuta tonu. I ētahi wā, ka roa pea ēnei tohu mō ngā marama ka puta. Engari i ētahi wā ka tere te puta. Mena ka tīmata wawe te maimoatanga, ka taea te ārai i ngā raruraru nui.

Ahakoa he tino onge, ka taea e tēnei mate, e kiia nei ko te dermatomyositis, te whakamomori i te ora, inā koa i roto i te tau tuatahi i muri i te tīmatanga o ngā tohu. Kua kitea hoki ka piki ake te tūponotanga o te whakawhanake i ētahi momo mate pukupuku.

He aha te rerekētanga i waenga i te Dermatomyositis me te Lupus?

He āhua rite te Dermatomyositis ki te lupus me ētahi atu mate pūnaha ārai mate. Heoi, kāore anō kia tino mōhiotia e ngā tohunga te pūtake o te dermatomyositis. Koia te take kāore i te whakarōpūtia hei āhua pūnaha ārai mate.

Nā, ki te mea he lupus tōu, tera pea ka pāngia koe e te mamae o ngā hononga, te kiri mārō me te ekisema, tae atu ki ngā raruraru ki ō whekau o roto (ina koa ko tō roro, ō pukahukahu, ō whatukuhu, me tō ngākau). Tērā pea ka puta ake ō tohumate, kātahi ka memeha haere, kātahi ka hoki mai anō – e kiia ana ēnei he putanga ohorere.

Heoi, ko te dermatomyositis te tohu o te ngoikore o te uaua me te mate o ngā kiko , me te puta o te kiri mākūkū. Ka kitea mā roto i ngā whakamātautau toto, ngā koiora, me ngā whakamātautau whakaahua.

Ahakoa he dermatomyositis, he lupus rānei, he mea nui kia tātaritanga me te rongoā wawe tonu. Mēnā ka kite koe i ētahi tohu hou, me toro atu ki te tākuta tonu.

Ko wai te hunga tino tūpono ka pāngia e tēnei mate? He pēhea te noa o tōna pānga?

Ka pāngia te tangata e te dermatomyositis, engari he nui ake te tūponotanga ka pāngia ētahi rōpū. Ko ētahi o ēnei ko:

• Ngā tamariki nohinohi i waenga i te 5 me te 15 tau.
• Ngā pakeke i waenga i te 40 me te 60 tau te pakeke.
• Ngā wāhine.

Me mōhio anō hoki he tino onge tēnei mate. I te toharite, kotahi anake i roto i te 100,000 tāngata ka pāngia e tēnei mate i ia tau. Nō reira, ka kite koe i te onge o tēnei mate.

He aha te pānga o tēnei mate ki tō tinana? Te mōrearea o te mate pukupuku?

Ka pāngia tō tinana e te mate e kiia nei ko te dermatomyositis mō te toenga o tō oranga.

Whakaarohia, mēnā ka tino kino tēnei ki ō uaua, kāore pea koe e kaha ki te whakamahi, ki te neke rānei i tētahi wāhanga o tō tinana. He maha ngā tau e roa ai te whanaketanga o tēnei. Engari, tera pea ka tere ake te ngoikore o ngā uaua o ētahi tāngata i ētahi atu.

Ko tētahi atu mea, kua kitea hoki ka piki ake te mōrearea o te whakawhanake i ētahi momo mate pukupuku e te dermatomyositis.

Te mate kiri me te mate pukupuku

Tata ki te 15% o te hunga e pāngia ana e te dermatomyositis ka pāngia e te mate pukupuku i muri mai i te oranga. Ko ngā momo mate pukupuku e kitea whānuitia ana i roto i te hunga e pāngia ana e te dermatomyositis ko:

• Matepukupuku ovarian
• Matepukupuku pūkahukahu
• Lymphoma
• Matepukupuku ū
• Matepukupuku koroni

Nō reira, he mea tino nui kia kōrero koe ki tō tākuta mō tō mōrearea ki te mate pukupuku me ngā whakamātautau e hiahiatia ana e koe.

He aha ngā tohu o tēnei mate?

Ko ngā tohu matua e rua, ko ngā tohu tino kitea o te dermatomyositis, ko te ngoikore o te uaua me te ponana kiri.

Tērā pea ka pāngia ētahi tāngata e te ngoikore o te uaua me te ponana kiri i te wā kotahi. Heoi, i ētahi wā ka noho tonu tētahi tohu mō ngā wiki, ngā marama, ngā tau rānei, me te kore tetahi atu e pāngia.

ngoikore o te uaua

Ka uaua pea te mahi i ētahi mahi o ia rā nā te ngoikore o te uaua. Hei tauira:

• Te noho tika.
• Te whakatika ake i te tūnga noho (pērā i te tūru, i te sofa rānei).
• Te piki i ngā arawhata.
• Te ara ake i te takotoranga i te moenga.
• Te horoi i ō makawe.

Whakaarohia te ngoikore o tō wairua mēnā kāore e taea e koe te mahi i ngā mea ngāwari pēnei.

Ekisema

Ka pā mai pea he ponana ki tō kiri i te dermatomyositis (ina koa i ngā wāhi e pāngia ana e te rā ). Ka rerekē pea te tae o te kiri, ka pupuhi hoki. Ko ngā wāhi e tino kitea ana tēnei ponana ko:

• Ngā kamo me te taha o ngā kanohi.
• Te taha mua o te uma me ngā pakihiwi (e kiia ana i ētahi wā he 'pōrearea tohu-V').
• Te tuara o te kaki me ngā pakihiwi (e kiia ana ko te 'tohu ponana shawl').
• Angaanga.

Ētahi atu tohu

Hei tāpiri, ka taea e te dermatomyositis te whakaputa i ngā tohu pēnei i:

• Te rerekētanga o te kiri me ngā puku i ngā ringaringa, inā koa i te taha o ngā ponapona (e kiia ana i ētahi wā ko ngā papule Gottron).
• Ngā putunga konupūmā i raro i te kiri, i roto i ngā uaua, i roto rānei i ngā kiko honohono.
• Ngā puku i roto i ngā turi, i ngā tuke rānei.
• Te ngatata o te kiri huri noa i te whao me ngā oko toto e kitea ana i te pito o te whao.
• Mamae hononga.

Ka pāngia ētahi tāngata (ina koa ko ngā tamariki nohinohi) e te dermatomyositis, ka tipu haere i te pakeketanga, ā, kāore e puta anō ngā tohu. Heoi, i roto i te 80% o ngā wā, ka noho hei mate mau tonu – arā, ka hoki mai anō i ia wā, i ia wā – ā, ka puta ngā tohu puta noa i te oranga.

He aha te take o tēnei?

Kāore anō kia mōhiotia e ngā tohunga te tino pūtake o te dermatomyositis, engari e whakaarohia ana he maha ngā āhuatanga e whai wāhi ana ki tēnei:

• Ngā āhuatanga ira: E ai ki ētahi rangahau he mate ira pea te dermatomyositis, arā, ka taea te tuku iho i roto i ngā whakatipuranga.
• Ngā raruraru ārai mate ā-tinana: E ai ki te kōrero i mua ake nei, he mate rite te dermatomyositis ki te maha o ngā mate ārai mate ā-tinana e whakaekehia ai e te pūnaha ārai mate o te tinana ngā kiko hauora.
• Ngā mate huaketo: He taunakitanga kei reira e whakaatu ana ka pāngia ētahi tāngata e te mate huaketo, ahakoa kua memeha, ka puta ai he mate e kiia nei ko te dermatomyositis.
• Ngā āhuatanga taiao: Kua kitea hoki e ētahi rangahau ko te hunga e noho ana i ngā rohe he nui te parahanga, he kino rānei te kounga o te hau, ka nui ake te tūponotanga ka pāngia rātou e te dermatomyositis.

Me pēhea te tautuhi i tēnei mate?

Ko te tikanga ka kitea te dermatomyositis mā roto i ngā whakamātautau toto me ngā tauira iti mai i tō kiri me ō uaua (biopsies) .

Ka whakamātauhia e tō tākuta tō toto kia kite ai:

• Mehemea kei te piki ake ngā taumata o ngā whākōkī uaua motuhake e tohu ana i te kino o te uaua.
• Ko ngā autoantibodies he pūtau e tohu ana kei te aro atu te pūnaha ārai mate ki tētahi mea e mōhiotia ana e ia he kino.

Me tango pea he koiora kiri mai i te ponana. Me tango pea e tō tākuta he koiora uaua hei tirotiro mēnā he pupuhi kei roto i ō uaua.

Tērā pea ka whai whakamātautau whakaahua koe. Mā ēnei whakamātautau ka taea e tō tākuta te tirotiro i ō uaua, io, pukahukahu, me ētahi atu okana. Ka taea e ēnei whakamātautau te āwhina ki te whakatau mēnā he dermatomyositis, he raruraru rānei ō tohu. Ko ngā whakamātautau whakaahua e whakamahia whānuitia ana hei tātaritanga i te dermatomyositis ko:

• Whakaahua Āhua Aukume (MRI)
• He hihi-X o te uma.

I ētahi wā, ka tonoa pea e tō tākuta he whakamātautau e kiia nei ko te electromyography (EMG). Ka inehia e tēnei whakamātautau te ngohe hiko e puta ana ina whakaohokia ngā uaua, ngā io rānei.

Me pēhea te rongoā?

Anei ētahi o ngā maimoatanga e wātea ana mō te dermatomyositis:

• Corticosteroids: Ka whakaitihia e tēnei momo rongoā te pupuhi o ō uaua.
• Whakaora tinana: Ka taea e te whakaora tinana (me te whakakori tinana whānui) te āwhina i te hanga anō i ngā kino i mahia e ō uaua. Ko te kaha ake o ō uaua, ko te pai ake o tō rātou kaha ki te tu atu i ngā kino i puta mai i te dermatomyositis.
• Ngā rongoā ārai mate: Ka ārai ēnei rongoā i tō pūnaha ārai mate ki te whakaeke i ngā pūtau me ngā kiko hauora. Ka taea e rātou te whakaiti i te kino o te pūnaha ārai mate o tō tinana ki ō uaua.
• Immunoglobulin ā-uaua (IVIg): He tāpiringa te IVIg ki tō toto toto, he wāhanga o te immunoglobulin kei roto i tō toto. Ka taea te hoatu i te maimoatanga IVIg me ngā rongoā ārai mate, hei maimoatanga rerekē rānei.
• Whakaora kōrero: Mena he ngoikore ō uaua i roto, i te taha rānei o tō korokoro, ka taea e te whakaora kōrero te whakapakari i ngā uaua o tō korokoro e āwhina ana i a koe ki te horomi kai.

Ko te momo maimoatanga e hiahiatia ana e koe ka whakawhirinaki ki te wāhi o ō tohu me te kaha o aua tohu. Kōrero ki tō tākuta mō ngā mea hei tumanako atu me te wā e hiahiatia ai ētahi maimoatanga.

Me pēhea te whakahaere i ngā tohu?

Ko te whakahaere i ngā tohu o te dermatomyositis he mahi roa pea – ko tōu oranga katoa pea.

• Ki te hoatu e tō tākuta, e tō kaiwhakaora tinana, e tō kaiwhakaora kōrero rānei he whakakorikori tinana ki a koe, me mahi kia rite ki ngā tohutohu, kia rite ki te maha o ngā wā e tohutohuhia ana e rātou. Mā tēnei ka āwhina i a koe kia kaha tonu ō uaua.
• Tangohia te rongoā kia rite ki te whakahaunga a te tākuta, mō te wā katoa.
• Āraia te pānga ki ngā hihi UV. Whakawhāitihia te wā i raro i te rā, kaua e whakamahi i ngā moenga tanning o roto, ā, noho ki roto, ki te atarangi rānei ina kei waho koe.
• I ngā wā katoa e mōhio ana koe kei te haere koe ki wahoWhakamahia he pare-rā. Kia tino mōhio kei roto i tō pare-rā he SPF 50 neke atu rānei, ā, pania anō i ia rua hāora.

Mena he dermatomyositis tōu, he mea nui kia toro atu koe ki tō tākuta i ia wā, i ia wā. Ka taea e ia te aroturuki i ō tohu me te tirotiro i ngā huringa o ō uaua, o tō kiri rānei.

He aha ngā mea ka taea e koe te tumanako atu i a koe e noho tahi ana me tēnei mate?

Kāore he rongoā tuturu mō te dermatomyositis, nō reira ka taea e koe te whakahaere i ō tohumate mō te toenga o tō oranga.

Ahakoa te maimoatanga, tata ki te 80% o te iwi he dermatomyositis mau tonu (e kiia ana ko te polycyclic dermatomyositis). Ko te tikanga ka puta mai, ka ngaro atu pea ō tohu puta noa i tō oranga. Tirohia he tākuta ina kite koe i ngā tohu e kino haere ana.

Tata ki te rua hautoru o te hunga e pāngia ana e te dermatomyositis ka pāngia e tētahi momo hauātanga tinana nā te pakaru o ngā uaua.

E 5% pea o te hunga kua tāpaetia ki te mate ka mate i te dermatomyositis. He tino teitei tēnei mōrearea i roto i te tau tuatahi o te tāpaetanga. Heoi, e 20% pea o te hunga e pāngia ana e te dermatomyositis ka ora mō te wā roa. Ko te tikanga ka taea e rātou te ora me te kore he tohu mō te wā roa.

Ka taea e ētahi tohu me ētahi atu āhuatanga te whakanui ake i te mōrearea o te mate. Ko ētahi tauira:

• Mena ka roa ake te maimoatanga i te ono marama.
• Mena kua neke atu i te 60 tau tō pakeke.
• Mena ka pāngia koe e ngā tohu kino.
• Mena kei roto i tō korokoro, i ō pukahukahu, i tō ngākau rānei ngā tohu.
• Mena kei a koe te mate pukupuku, mena rānei kua puta he mate hou.

Āhea koe me toro atu ki te tākuta?

Ki te kite koe i te ngoikore hou o ō uaua, inā koa he ponana kiri tōu, me toro atu ki te tākuta tonu. Ko te wawe o te tautuhi i te dermatomyositis, ko te wawe hoki ka taea e koe te tīmata i te maimoatanga. Ka taea e tēnei te whakaiti i te tūponotanga o ngā tohu kino me ētahi atu raruraru.

Pātai atu hoki kia hia te auau o tō haerenga ki te tākuta hei aroturuki i ō tohu me ngā huringa ki ō uaua, ki tō kiri rānei.

He aha ngā pātai me pātai atu koe ki tō tākuta?

He mea noa te pātai ina ako koe mō tētahi mate pēnei. Ka taea e koe te pātai atu ki tō tākuta i ngā pātai pēnei:

• He dermatomyositis tōku, he mate rānei tētahi atu?
• He aha ngā momo whakamātautau me mahi e au?
• He aha te momo maimoatanga e hiahiatia ana e au, ā, kia pēhea te roa?
• Me tirotirohia te mate pukupuku?

He mea noa te mataku nui ina rongo koe kei a koe tētahi mate pēnei i te dermatomyositis.He ohorere te rongo mō tētahi mate e pā ana ki te oranga katoa, ā, tera pea ka mate. Engari me mahi i ia taahiraa i ia taahiraa. Ko te wawe o te tautuhi i tō mate, ko te wawe hoki o te tīmatanga o te maimoatanga.

Kōrero ki tō tākuta mō te whakamahere i tō maimoatanga me te whakahaere i ngā tohumate. Māna e whakamārama ngā mea hei tumanakohia i muri mai, me ngā huringa me mahi e koe hei whakarite mō te kino haere o ō tohumate dermatomyositis.

Ngā mea hei maumahara poto

He mate onge te Dermatomyositis e puta ai te ngoikore o te uaua me te ponana kiri.

• Ka taea tēnei te pā ki te tangata katoa, engari he nui ake te kitea i roto i ngā tamariki 5-15 tau te pakeke, ngā pakeke 40-60 tau te pakeke, me ngā wāhine.
• He mea tino nui te rapu tohutohu hauora i te wā tonu ka kitea e koe ngā tohu. Mā te maimoatanga tere ka taea te whakaiti i ngā raruraru.
• Ahakoa kāore he rongoā tuturu mō tēnei, ka taea te whakahaere i ngā tohu mā te maimoatanga me te whakahaere.
• Kōrero hoki ki tō tākuta mō te mōrearea o te mate pukupuku.
• Kaua e manukanuka, kāore koe i te mokemoke. Mā te āwhina a ngā tākuta me te hunga e arohaina ana e koe, ka taea e koe te whakatau i tēnei āhuatanga.

` Te kiri māuiui, te ngoikore o te uaua, ngā mate kiri, ngā ponana, ngā mate pūnaha ārai mate, te mōrearea o te mate pukupuku, te whakaora tinana