He uaua ki a koe te whakatika ake i te tūru, te piki arawhata, te mahi rānei i ngā mahi māmā pēnei i te heru i ō makawe? He ngoikore noa iho ō uaua, kāore he ora? Ko te take o tēnei mate pea he mate e kiia nei ko te myopathy. Tērā pea he ingoa hou tēnei ki a koe. Kaua e manukanuka, ka kōrerohia e mātou ngā mea katoa i roto i te huarahi māmā ka taea e koe te mārama.
He aha tonu te Myopathy?
He kupu ngāwari noa iho, ko te myopathy he kupu whānui mō te ngoikore o ō tātou uaua angaanga , arā, ngā uaua e hono ana ki ō tātou wheua, e neke ana i a tātou. Whakaarohia tō tātou tinana he motuka. Kei te whakahaerehia tēnei motuka e tētahi miihini e kiia nei ko te uaua. Ko te myopathy he āhuatanga e pakaru ai ngā muka uaua o ēnei uaua, e whakaiti ana i te kaha o taua miihini. Ehara tēnei i te mate kotahi, engari he rōpū mate.
He aha ngā momo matua o te myopathy?
Ae, e rua ngā momo matua o te myopathy. He rite ki ētahi raruraru ka riro mai i a tātou mai i te whānautanga, me ētahi raruraru ka puta ake i a tātou e ora ana.
| Momo Myopathy | Hei whakarāpopototanga... |
|---|---|
| Ngā Myopathies Tuku Iho | Ko ēnei ngā āhuatanga i puta mai i te hapa ira. Arā, ko ngā mate i puta mai i te ira hapa i tukuna iho mai i te whaea, i te pāpā rānei. |
| Ngā Myopathies i Whiwhihia | Ko ēnei ka puta mai i tētahi atu mate hauora, mate pāwera, rongoā i tangohia, tētahi atu take o waho rānei i a koe e ora ana. |
Nā, kia tirohia tātou ēnei momo i roto i ngā taipitopito atu.
Ngā Myopathies Tuku Iho
Nā ngā āhuatanga ira ēnei i hua mai, nō reira he maha ngā wā ka tukuna iho.
- Ngā Myopathies whānau:He āhuatanga ēnei e kitea ana i te whānautanga. Tērā pea ka puta tonu ngā tohu i ētahi tamariki. Engari mō ētahi, ka puta pea ngā tohu i muri mai i te oranga, i muri mai rānei i te oranga. Ko te mea ahurei mō tēnei āhuatanga ko te ngoikore e pā ana ki te nuinga o ngā uaua o te tinana, ā, ka kino haere i te roanga o te wā.
- Ngā Mitochondrial Myopathies: Ki te kī māmā, ko ngā mitochondria ngā pākahiko e whakakaha ana i ō tātou pūtau. Ina kore e mahi pai ēnei pākahiko, kāore ngā uaua e whiwhi i te pūngao e hiahiatia ana, ā, ka ngoikore. Kāore e pā noa tēnei āhuatanga ki ngā uaua, engari ki ētahi atu okana hoki e hiahia ana ki te nui o te pūngao, pērā i te ngākau, te roro, me te pūnaha nakunaku.
- Ngā Mate Pūkahukahu Pūkahukahu: Me whai matū motuhake ō tātou uaua e kiia nei ko ngā whākōkī kia pai ai te mahi. Ka puta tēnei āhuatanga i te hapa o ngā ira e hanga ana i ēnei whākōkī. I tēnei wā, ka pāngia pea e te mamae nui me te wiri o ngā uaua, inā koa i ngā wāhi pēnei i ngā pakihiwi me ngā huha, i te wā e whakakorikori ana. I ētahi wā, ka puta he āhuatanga kino e kiia nei ko te "Rhabdomyolysis", e pakaru ai ngā muka uaua.
- Ngā Mate Pūngāwerewere Uaua: Kua rongo pea koe i tēnei ingoa i mua. He āhuatanga tēnei e memeha haere ana, e ngoikore haere ana ngā uaua nā te korenga o te hanga pūmua e hiahiatia ana hei pupuri i te kaha o te hanganga o ngā uaua. Ka pā pea tēnei ki ngā uaua o ngā ringa, o ngā waewae, ā, i ētahi wā ko te mata me ngā kanohi.
Ngā Myopathies i Whiwhihia
Ehara ēnei i te mea i whānau mai koe me ēnei. He āhuatanga ēnei e puta ake ana i runga i ngā take maha i roto i te ao.
| Take | Ngā Tauira me ngā Taipitopito |
|---|---|
| Ngā raruraru pūnaha ārai mate (Aunoa/Mumura) | Ngā āhuatanga ka puta ina whakaeke hē te pūnaha parepare o te tinana (pūnaha ārai mate) i ōna ake kiko. |
| Ngā paitini, ngā raau taero rānei (Toxic Myopathy) | Ka taea e ētahi mea te kino i ngā uaua. Hei tauira, ko te nui rawa o te inu waipiro, te manawa i ngā paoa mai i ētahi momo peita, me ētahi rongoā (hei tauira, ētahi rongoā whakaheke cholesterol (statins), steroids (corticosteroids), me ētahi rongoā e whakamahia ana hei rongoā i te HIV). |
| Nga raruraru taiaki ( Endocrine Myopathies) | Ka taea te ngoikore o te uaua e ngā kore taurite o ngā homoni i roto i te tinana. Hei tauira, ko te tairoi ngoikore (hypothyroidism) te tairoi nui rawa rānei (hyperthyroidism), ngā raruraru homoni parathyroid, me ngā mate o te repe adrenal. |
| Nga mate (Infectious Myopathies) | Ka pāngia ngā uaua e ngā mate maha. Hei tauira: te HIV, ngā huaketo pērā i te rewharewha, ngā mate kitakita, me ngā mate pirinoa. |
| Te Tauritekore o te Irahiko | Ka pāngia te mahi a te uaua e te hekenga, te pikinga rānei o ngā taumata o ngā irahiko matua pērā i te pāhare pāporo me te konupora i roto i te tinana. |
| Te Myopathy Mate Kino | Te ngoikore o te uaua nā te mea he tino mate i roto i te wāhi pēnei i te wāhanga tiaki nui (ICU), te noho roa i runga i te moenga, me ētahi o ngā rongoā kaha i hoatu i taua wā. |
He aha ngā tohu o te mate myopathy?
Ahakoa he maha ngā momo myopathy, he maha ngā tohu noa ka kitea i te nuinga o ēnei.
- Ngoikoretanga o te uaua: He ngoikore, inā koa i ngā uaua e tata ana ki waenganui o te tinana (ngā pakihiwi, ngā ringa o runga, ngā hope, me ngā huha).
- Te wiri o te uaua, te pakari, me te mamae.
- Te tino ngenge ahakoa i muri i te mahi i tētahi mahi iti.
- Te kore o te kaha.
Ka pāngia ngā taha e rua o te tinana e tēnei ngoikore, arā, ka rite te ngoikore o te ringa maui ki te ringa matau.
He aha ō whakaaro mō tēnei ngoikore?
Ka uaua pea te mahi i ngā mahi o ia rā nā te ngoikore o te uaua. Whakaarohia...
- Ahakoa ngā mahi māmā noa iho pēnei i te heru i tō makawe, te kakahu i ngā kākahu, me te kaukau ka āhua uaua.
- He uaua ki te whakatika ake i te tūru noho.
- Ka tino hoha te piki arawhata.
- He uaua ki te hapai i tō ringa ki te tiki i tētahi mea mai i tētahi whata i runga ake i tōu mahunga.
- Ina ngenge au, ka rite ki te uaua ki te manawa.
Haunga tēnei, ka kitea pea ētahi atu tohu motuhake i runga i te momo myopathy. Hei tauira, ka tomuri pea ētahi tamariki ki te tīmata hikoi me te peke. Kāore pea e taea e rātou te oma, te peke rānei i te wā e takaro ana me ō rātou hoa. Ka uaua pea ētahi ki te horomi me te kōrero pōturi i te wā e kōrero ana.
Me pēhea koe e mōhio ai mēnā kei a koe tēnei āhuatanga?
Mena kei a koe ēnei tohu, ko te mea nui ko te toro atu ki tō tākuta whānau. Ka tangohia e ia he hītori whānui mō ō tohu, tō hītori hauora whānau, me ngā rongoā katoa e tangohia ana e koe. Kātahi ka whakahaerehia e ia he whakamātautau tinana, ā, ki te tika, ka tukuna koe ki tētahi tohunga, pērā i te tākuta roro, te tākuta rumatiki rānei.
He maha ngā whakamātautau ka taea te whakahaere hei whakaū i te mate.
| Whakamātautau | He aha tā tēnei e tirotiro ai? (He aha tā tēnei e tirotiro ai?) |
|---|---|
| Ngā Whakamātautau Toto | Ka tirohia ngā whākōkī e tukuna ana ki roto i te toto ina pakaru ngā uaua (hei tauira, te creatine kinase (CK)), ngā taumata huware, ngā taumata homoni, me ngā tohu o ngā raruraru pūnaha ārai mate. |
| Whakamātautau EMG (Electromyography) | He whakamātautau motuhake e tuku ana i ngā tohu hiko ngawari ki ngā uaua me ngā io hei ine i tā rātou mahi me te nui o te kino. |
| Matawai MRI (Whakaahua Āhua Aukume) | Ka kitea mārama te hanganga o ngā uaua me ngā huringa kua puta i roto i a rātou. |
| Ngā Whakamātautau Ira | Mena kei te whakapaetia he myopathy whānau, ka mahia tēnei whakamātautau hei whakaū mena he hapa ira e pā ana ki tēnei. |
| Te Kohikohi Uaua | Ka tangohia tētahi wahi iti rawa o tētahi puku whakapae mā te pokanga, ā, ka tirotirohia i raro i tētahi karu hiko hei tātaritanga tika i te mate. |
He aha ngā maimoatanga mō te myopathy?
Ko te momo maimoatanga e whakawhirinaki ana ki te momo myopathy kei a koe. Kāore he maimoatanga kotahi e pai ana mō te katoa.
- Maimoatanga Whānui: He mea nui te whakaora tinana me te whakaora mahi mō te maha o ngā mate myopathy. Ka taea e ēnei te āwhina ki te pupuri i te kaha me te ngāwari o te uaua, ā, ka āwhina i a koe ki te mahi i ngā mahi o ia rā kia māmā ake.
- Mō ngā raruraru o te pūnaha ārai mate: Ka hoatu ngā rongoā e pehi ana i te pūnaha ārai mate, pērā i ngā immunosuppressants me ngā corticosteroids.
- Mō ngā mate whatukuhu: Kāore anō kia kitea he rongoā tuturu mō te nuinga o ēnei mate. Heoi anō, ka taea te whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga. Kei te wātea inaianei ngā rongoā hou mō ētahi āhuatanga motuhake (hei tauira, te mate uaua Duchenne, te mate Pompe).
- Mō ētahi atu mate pūkahukahu tuarua: Ka aro te maimoatanga ki te pūtake o te mate pūkahukahu. Hei tauira, mēnā he raruraru homoni, ka whakatikahia, mēnā he mate, ka hoatu he paturopi, mēnā rānei i puta mai i tētahi rongoā, ka mutu te rongoā.
Me pēhea taku tiaki i ahau anō?
Ahakoa he mate roa te myopathy, ka taea e koe te whakahaere i te mate me te noho ora mā te whakarerekē i tō momo noho me te whakahaere tika i taua mate.
- Kai i tētahi kai pai, kai totika. He mea tino nui te kai taurite me te nui o ngā huawhenua me ngā hua.
- Kia kaha tonu. Me whakakorikori tinana māmā. Engari kia maumahara, i mua i te tīmatanga o tētahi kaupapa whakakorikori tinana, me kōrero koe ki tō tākuta me te pātai he aha ngā whakakorikori tinana e tika ana mō tō āhua.
- Kia mau tonu te taumaha tinana tika.
- Ki te uaua ki te horomi, kainga ngā kai ngohengohe, wai. Kōroria kia pai, kātahi ka kainga.
- Tangohia te rongoā i tohua e te tākuta i te wā tika.
- Kia tūpato ki ngā panonitanga o tō tinana. Mēnā ka kite koe i ētahi panonitanga, i ētahi pikinga rānei o ngā tohu, whakamōhio atu ki tō tākuta tonu.
Karere Tangohia ki te Kāinga
- Ko te myopathy he ingoa whānui mō ētahi āhuatanga e ngoikore ai ngā uaua.
- Ka taea e ēnei te whānau mai (ira) te puta rānei i te wā e ora ana mō ētahi atu take.
- Ko te ngoikore o te uaua, te pakari, me te tino ngenge ahakoa mō ngā mahi iti noa iho, koinei ngā tohu matua.
- Mena kei a koe ēnei tohu, he mea tino nui kia rapu tohutohu hauora i te wā tonu.
- He rerekē ngā kōwhiringa maimoatanga i runga i te pūtake o te mate. Mā te whakahaere tika me te maimoatanga, ka taea te whakahaere pai i ngā mate maha, ā, ka taea te ora i te oranga noa.
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