Kei te ngoikore anō hoki koe? He mate pea tēnei e kiia nei ko te myopathy!

Kei te ahua ngoikore, kei te ngenge rānei ō waewae i ētahi wā? He uaua ki a koe te mahi i ngā mea ngāwari noa iho pēnei i te whakatika ake i te tūru, te hiki i tētahi mea taumaha, te heru rānei i ō makawe? Ki te ahua ngoikore haere ō uaua, kāore he take e kitea ana, kaua e whakakore noa i tēnei mea he mea noa. Ko te take pea o ēnei tohu he mate e kiia nei ko te 'myopathy', ka kōrerohia e tātou i tēnei rā. Kaua e manukanuka, ka kōrerohia e tātou tēnei i roto i tētahi huarahi māmā e mārama ai koe.

He aha te myopathy? He māmā noa iho...

Ko te myopathy, he rōpū mate e pā ana ki ngā uaua e piri ana ki ō tātou wheua. Ka pakaru ēnei mate i ō tātou muka uaua, ka ngoikore hoki. Pērā i te ngoikore o te mīhini o te motuka, ka uaua te taraiwa, ina ngoikore ngā uaua, ka uaua hoki ki ō tātou tinana te mahi i ngā mahi o ia rā.

He rerekē ngā momo myopathy?

Ae, he rerekē ngā momo whakarōpūtanga o ngā myopathies. E rua ngā wāhanga matua: ko ngā myopathies tuku iho me ngā myopathies whiwhi . Me titiro tātou ki ia momo.

He aha ngā Myopathies Tuku Iho?

Koinei ngā momo myopathy e puta mai ana i te tukunga iho o tētahi whakarerekētanga ira rerekē kei roto i te tinana i te whānautanga, mai i tō tātou whaea, i tō tātou pāpā rānei.

• Ngā mate pūkahukahu whānau:

Ko te tikanga ka tīmata ngā tohu i te whānautanga, i te tamarikitanga rānei. Heoi, ka puta pea i ētahi wā i te pakeketanga, i muri mai rānei. Ko tētahi āhuatanga motuhake o tēnei momo ko te ngoikore kāore i te herea ki ngā uaua e tata ana ki waenganui o te tinana, engari ka pā ki ngā uaua o te tinana katoa, ā, he maha ngā wā kāore te mate e ahu whakamua.

• Ngā mate pūkahukahu mitochondrial:

He iti ngā wheketere o roto i ō tātou pūtau e kiia nei ko ngā mitochondria hei hanga pūngao. Ko tēnei momo myopathy ka puta mai i tētahi hapa o ēnei mitochondria. Haunga te ngoikore o te uaua, ka pā anō hoki ēnei āhuatanga ki ētahi atu pūnaha okana, pērā i te ngākau, te roro, me te pūnaha gastrointestinal. Ka puta pea ēnei nā ngā whakarerekētanga ira, ahakoa he hītori whānau, kāore rānei.

• Ngā mate pūkahukahu pākia:

Ko tēnei myopathy i puta mai i ngā hapa o ngā ira e hanga ana i ngā whākōkī e āwhina ana i ngā uaua kia mahi tika, kia neke tika hoki. Ka taea e ia te whakangenge i te wā e whakakorikori ana, te mamae o ngā pakihiwi me ngā huha i te wā e whakakorikori ana, te mate rānei e kiia nei ko te rhabdomyolysis, e pakaru ai ngā muka uaua me te kore e whara. I ētahi wā ka puta mai, ka ngaro atu ngā tohu, me te ngoikore o te uaua, kātahi ka hoki ki te āhua noa.

• Ngā mate pukupuku uaua:

I ēnei wā, ka ngoikore haere ngā uaua, ka memeha haere nā te mea he rerekē, he kore rānei o ngā pūmua tautoko hanganga e hiahiatia ana e te kiko uaua. I ia wā, ka pāngia ngā ringa me/ngā waewae rānei ki ngā taumata rerekē. I ētahi wā, ka pāngia hoki ngā uaua o ngā kanohi, o te mata rānei.

He aha ngā myopathy kua riro mai?

Koinei ngā momo myopathies ka puta ake i muri mai i te ao. Ka taea te puta mai i ngā momo āhuatanga maha, tae atu ki ētahi atu mate, ngā mate pāwera, te pānga ki ētahi rongoā, me ngā kore taurite o te electrolyte i roto i te tinana.

• Te mate pūkahukahu ā-tinana/mumura:

Ko te mea ka tupu i roto i tēnei, ka whakaekea e te pūnaha ārai mate o tō tātou tinana ō tātou ake uaua. Nō reira, ka ngoikore te mahi a ngā uaua. He rite ki te whakaeke a ō tātou ake parepare i a rātou anō.

• Te myopathy paitini:

Ka puta tēnei āhuatanga ina whakararuraru te paitini, te rongoā rānei i te hanganga, i te mahi rānei o ngā uaua.

• Ngā paitini: Waipiro, toluene (he matū pupuhi e kitea ana i roto i ngā mea pēnei i te peita e hongihia ana e ētahi tāngata hei haurangi).
• Ngā Rongoā: Ngā rongoā ārai ārai mate (hei tauira, pembrolizumab, nivolumab), corticosteroids (hei tauira, prednisone), ngā rongoā whakaheke cholesterol (statins), amiodarone, colchicine, chloroquine, ngā rongoā ārai huaketo me ngā aukati protease mō te mate HIV, omeprazole.

• Ngā mate pūkahukahu endocrine:

Ka puta tēnei āhuatanga ina pāngia ngā uaua e te mahi a ngā homoni i roto i te tinana.

• Repe tairoiti: Ahakoa he nui ake te kitea o ngā taumata iti o te homoni tairoiti (hypothyroidism), ka puta anō hoki ngā raruraru nā te nui o ngā taumata homoni tairoiti (hyperthyroidism).
• Repe parathyroid: Ka piki ake ngā taumata konupūmā i roto i te toto i te hyperparathyroidism.
• Te repe adrenal: 'Te mate a Addison' me te 'te mate a Cushing'.

• Ngā mate pāwera o te roro:

Ka pāngia te mahi a te uaua e ngā momo mate urutā.

• Ngā mate urutā: HIV, rewharewha, Epstein-Barr.
• Ngā mate kitakita: 'pyomyositis kitakita'.
• 'Te mate Lyme'.
• Ngā mate pirinoa: 'trichinosis', 'toxoplasmosis', 'cysticercosis'.
• Ngā mate harore: Candida, Coccidiomycosis.

• Ngā taurite kore o te irahiko:

Ka pā te pikinga, te hekenga rānei o ngā taumata o ētahi irahiko nui i roto i te tinana ki te mahi a ngā uaua.

• Pāhare pākawa: kua heke ('hypokalemia'), kua piki ('hyperkalemia').
• Konupora: Kua piki ake ('Hypermagnesemia').

• Te myopathy mate kino i roto i te wāhanga tiaki nui:

He āhuatanga tēnei e pā ana ki ngā peka me ngā uaua manawa o te hunga e tino mate ana , ā, e rongoatia ana i roto i te wāhanga tiaki nui (ICU) . Ka puta pea tēnei i te kore e nekeneke mō te wā roa, i te whakamahinga rānei o ngā rongoā whakangāwari uaua, corticosteroids, me ngā pire moe i whakamahia i te wā e rongoatia ana.

Ko wai te hunga ka nui ake te tūponotanga ka pāngia e te myopathy? He pēhea te noa o tēnei mate?

Ka taea e te tangata te pāngia e te myopathy, engari he nui ake te mōrearea o ētahi tāngata.

Ngā āhuatanga ka whakapiki ake i te mōrearea:

• Mena he myopathy tō tetahi o te whānau, he nui te tūponotanga ka riro i a ia tēnei mate mā te ira tuku iho.
• He tāne. Ko ētahi momo myopathy ka tukuna mā te ira-X, nō reira ka nui ake te pānga ki ngā tāne i ngā wāhine. Heoi, ko ngā momo myopathy whānau e tukuna ana mā ētahi atu ira-chromosome ka pā ki te katoa.
• He mate pūnaha ārai mate, mate pūnaha io, mate endocrine rānei kei a koe.
• Te pānga ki ētahi rongoā, ki ētahi paitini rānei (tirohia te wāhanga mō te myopathy paitini i kōrerotia i mua ake nei).

Ka rerekē te horapa o te myopathy i runga i te momo. Hei tauira, ko te myopathy ka puta ake i muri mai i te oranga:

• He nui ake te kitea o ngā mate pūkahukahu mumura me ngā mate pūnaha endocrine i ētahi atu momo, ā, he nui ake te kitea o ngā wāhine i ngā tāne.
• I waenga i te 9 me te 32 i roto i te 100,000 tāngata e pāngia ana e te mate mumura o ngā karu kanohi.
• I waenganui i te 25% me te 79% o ngā pakeke e pāngia ana e te hypothyroidism ka pāngia e ngā tohu e pā ana ki te uaua, engari ko te auau o te myopathy mārama he iti iho pea i te 10%.

Ko ngā mate pūkahukahu whānau tino noa ko ngā mate ngoikore o te uaua, e kitea nuitia ana i roto i ngā tāne.

• Ko ngā mate pukupuku uaua a Duchenne me Becker ngā momo tino noa, e pā ana ki te 7 i roto i te 100,000 tāngata puta noa i te ao.
• Kotahi i roto i te 5,000 tāngata e pāngia ana e ngā mate mitochondrial, ā, ko te nuinga o ēnei ka pā ki te uaua angiangi.
• He tino onge ētahi atu momo myopathies whānautanga.

Nā, he aha ngā tohu o te myopathy?

He maha ngā tohu noa o te maha o ngā momo myopathy. Ko ēnei:

• Te ngoikore o te uaua.Tērā pea ko ngā uaua o ngā pakihiwi, o ngā ringa o runga, me ngā huha (koinei ngā mea e tino pāngia ana, e tino kino rawa atu hoki).
• Ngā māuiui uaua, te pakari, me te kōpeketanga.
• Te tere o te ngenge i te wā e whakakorikori tinana ana, e mahi ana rānei i tētahi mahi iti noa iho.
• Te āhua kore ora, te kore kaha.

He aha te āhua o te myopathy?

I roto i te maha o ngā myopathies, ka ngoikore ngā uaua o ngā taha e rua o te tinana (he ōrite). Ko ngā uaua e tata ana ki waenganui o te tinana (ngā uaua proximal), pērā i ngā pakihiwi, ngā ringa o runga, ngā hope, me ngā huha, ka tino pāngia. Nō reira, ka pāngia pea koe e ngā tohu pēnei i:

• He uaua ki te mahi i ngā mahi o ia rā, pērā i te kaukau, te whakakakahu, me te heru i ō makawe.
• Te uaua ki te whakatika ake i te tūru, te piki arawhata, te mahi rānei i ngā mahi e hiahia ana kia toro atu te ringa ki runga ake i tō mahunga (hei tauira, te whakawhiti i te pūrama rama i te tuanui).
• Te āhua e wiriwiri ana, e oho ana ngā uaua.
• Ka tere te ngenge o ngā uaua i te wā e mahi ana i tētahi mahi.
• Te uaua ki te manawa i te wā e whakakorikori ana.

Kāore e pā ki ngā uaua o ngā nikau me ngā kapu o te waewae i te nuinga o te wā.

He rerekē ētahi atu tohu i runga i te momo myopathy.

• Ka taea e te ngoikore o te uaua te noho pumau (kāore e ahu whakamua) te haere mārire rānei. I ētahi mate, ka haere mai, ka haere atu te ngoikore o te uaua, i ētahi wā ia he kaha noa iho.
• Te whakaroa i te whanaketanga o ngā pūkenga nekeneke (hei tauira, te hīkoi, te peke, te piki arawhata, te pupuri i te pūnu, i te pene rānei) i roto i ngā tamariki nohinohi.
• Te kore e taea te eke ki te taha o ētahi atu tamariki i te wā e takaro ana i ngā hākinakina, e takaro ana rānei i waho (hei tauira, te takaro hopu poi).
• Ngā raruraru ki ngā uaua e āwhina ana ki te horomi me te kōrero. Ka raru pea te kai, ka pōturi hoki te kōrero.

Me aha ahau mēnā kei te whakapae ahau he myopathy tōku?

Mena kei a koe ēnei tohu, me kōrero tuatahi koe ki tō tākuta tiaki tuatahi. I runga i ō tohu, ka tukuna pea koe e ia ki tētahi tohunga, pērā i te tākuta roro, i te tākuta rumatiki rānei.

Me pēhea te tautuhi i te myopathy?

Ka pātai atu tō tākuta ki a koe mō tō hītori hauora, mēnā kua pāngia tētahi o tō whānau e ngā āhuatanga rite, ngā rongoā e tangohia ana e koe, me ō tohumate. Kātahi ka tirotirohia tō kiri, ō urupare, tō kaha uaua, tō taurite, me ō kare ā-roto.

Ngā momo whakamātautau ka tonoa pea e te tākuta:

• Ngā whakamātautau toto:
• I ētahi myopathies, ka piki ake pea ngā taumata whākōkī uaua pērā i te creatine kinase (CK) me te aldolase nā te pakaru o ngā muka uaua.
• Ngā taumata irahiko pērā i te konutai, te konupora, te pāhare pāporo, te konupūmā, me te whākōkī.
• Ngā whakamātautau mō ngā mate pūnaha ārai mate: Hei tauira, `Antinuclear Antibodies (ANA), `Rheumatoid Factor', `Sedimentation Rate' me te `C-reactive protein'.
• Ngā whakamātautau repe endocrine: hei tauira, ngā taumata o ngā homoni tairoi.
• Te Electromyography (EMG) me ngā rangahau mō te kawe io: Ka ine ēnei whakamātautau i te momo me te whānuitanga o te kino o te uaua mā te ine i te haere o te hiko mā roto i ngā io me te whakauru i ngā ngira iti ki roto i ngā uaua.
• He whakamātautau whakaahua aukume (MRI) o ngā uaua .
• Ngā whakamātautau ira.
• Ko te koiora uaua: Ko te tango i tētahi wahi iti o te kiko uaua mā te pokanga hei tirotiro.

Me pēhea te rongoā i te myopathy?

Kia tautuhia te momo myopathy tika kei a koe, ka whakawhanakehia e tō tākuta he mahere maimoatanga e hāngai ana ki ō tohumate.

Ko te nuinga o ngā maimoatanga he whakaora tinana, he whakaora mahi, me ētahi momo whakakori tinana . Ko ētahi atu maimoatanga he mea motuhake ki te momo myopathy. I te nuinga o te wā, ko te nuinga o ngā myopathies kua riro mai ka taea te whakahaere pai, ka whakaitihia te ngoikore me ngā tohu. Ko ētahi myopathies whānautanga he maimoatanga motuhake ka taea te whakaroa i te haere whakamua o te mate. I tēnei wā, kāore he maimoatanga motuhake mō te nuinga o ngā myopathies whānautanga, engari ka taea e te whakaora tinana me ētahi momo whakakori tinana te āwhina.

Ngā myopathies mumura me te autoimmune e pā ana

Ko te whāinga o te maimoatanga mō ēnei he whakaiti i te mumura me te urupare ā-tinana o te tinana ki ngā mate pūkahukahu. Ko ngā maimoatanga noa mō ēnei myopathies ko:

• Ngā rongoā ārai mate/whakaiti i te pūnaha ārai mate: Hei tauira, te methotrexate, te cyclosporine, te tacrolimus, te azathioprine, te mycophenolate, te rituximab, me te immunoglobulin intravenous (IVIg) me te immunoglobulin subcutaneous rānei (SubQIg).
• `Corticosteroids`: Hei tauira, `prednisone` `methylprednisolone` rānei.

Ngā myopathies tuku iho me ngā myopathies ira

He maha ngā mate pūkahukahu whānau me ngā mate ira kāore he maimoatanga motuhake, kāore hoki he rongoā katoa.Ko te whakahaere matua ko te whakahaere i ngā tohu me ngā momo rongoā. He maha ngā whakamātautau haumanu kei te haere tonu i roto i ngā momo rangahau e pā ana ki te maimoatanga me te rongoā ira.

Ka taea te rongoā i ngā āhuatanga e kiia nei ko te Duchenne muscular dystrophy me te mate Pompe mā te whakamahi i ngā rongoā motuhake.

Ētahi atu myopathies kua riro mai

Ka rongoāhia e ngā tākuta ngā myopathies i puta mai i ngā take endocrine, paitini, me ngā mate pāwera mā te rongoā i te mate pūtake i puta ai te myopathy. Ka rongoāhia ngā myopathies paitini mā te whakamutu i te matū e pā ana ki te mate (hei tauira, te waipiro, te toluene) te rongoā rānei (hei tauira, ngā statin). Ko ngā tohumate uaua i puta mai i ngā huakita, ngā huaketo, me ētahi atu mate pāwera ka pai ake ina rongoā tikahia te mate ki ngā paturopi.

Me pēhea taku tiaki i tōku hauora?

Ahakoa he mate whānau mai te myopathy, he mate whiwhi, he mate roa rānei (mau tonu), kei reira ngā mea ka taea e koe te mahi hei pupuri i tō hauora me te whakahaere i te mate. Ko ētahi o ēnei:

• Kai i tētahi kai pai, taurite hoki. Tāpirihia he maha o ngā hua me ngā huawhenua ki roto i tāu kai.
• Kia kaha tonu te mahi me te whakakorikori ngākau ngawari. I runga i te momo myopathy e pā ana ki a koe, tera pea ka tohutohuhia koe kia kaua e mahi i ētahi momo hiki taumaha. Nō reira, kōrero ki tō tākuta i mua i te tīmatanga o tētahi kaupapa whakakorikori tinana.
• Kia mau tonu te taumaha hauora.
• Mena he kiri mākūkū tōu i puta mai i te dermatomyositis, tiakina tō kiri mai i te rā. Ka kino ake pea te mākūkūkū. Mauria he kākahu tiaki me te pōtae i ngā wā katoa e taea ai. Kaua e wareware ki te pania he hinu ārai rā me te SPF 30 pea i mua i te haerenga ki waho.
• Ki te uaua ki te horomi, kainga ngā kai ngawari, ngā kai totoka rānei. Ka taea hoki e koe te whakapūkara i tō kai. Ki te mea he tangata takoto kau koe i runga i te moenga, kai i a koe e noho ana i runga i te moenga.
• Tangohia ngā rongoā katoa kua tohua i te wā tika.
• Mena e taunakitia ana ngā maimoatanga pēnei i te whakaora tinana, te whakaora mahi, te whakaora kōrero rānei, me whai wāhi atu koe ki aua maimoatanga.

Kia maumahara, nā te mea he maha ngā momo myopathy, me whakawhanake e tō tākuta he mahere maimoatanga e hāngai ana ki tō momo myopathy me ō tohumate. Nō reira, he mea nui kia whai i ana tohutohu me te tika. Kia aro hoki ki tō tinana. Kia mōhio ki ngā huringa katoa o tō āhua, ki te kaha rānei o ō tohumate. Tirohia tō tākuta i runga i tētahi wātaka auau (tērā atu rānei i mua atu mēnā ka kite koe i ētahi huringa). Mā tēnei, ka taea e koe te hanga huringa ki tō mahere maimoatanga i te wā tonu ka puta mai ngā tohumate.

Hei whakamutunga, ko ngā mea tino nui hei maumahara

Ehara te myopathy i te mea hei wehi, engari ehara hoki i te āhuatanga hei warewaretia.

• Mena ka pāngia koe e te ngoikore tonu o te uaua, te mamae, te ngenge rānei, me toro atu koe ki te tākuta.
• He maha ngā momo myopathy, nō reira he mea tino nui te tautuhi tika.
• He maha ngā momo maimoatanga me ngā tikanga whakahaere mō te myopathy.
• Mā te whai i ngā tohutohu a tō tākuta, te tango i ngā rongoā kua tohua, me te noho i tētahi momo noho hauora, ka taea e koe te noho i tētahi oranga pai me tēnei mate.

Ko tāku tumanako ka kitea e koe he whai hua ēnei mōhiohio. Mēnā he pātai anō āu, kaua e wehi ki te kōrero ki te tākuta i ngā wā katoa.

` Te ngoikore o te uaua, te mamae o te uaua, ngā mate ira, ngā mate pūnaha ārai mate, ngā tohu uaua, te maimoatanga o te myopathy