I ētahi wā, e ahua pai ana tō oho ake i te ata, engari i te roanga o te rā, e ahua korekore ana tō kaha? Me te mea he ngoikore rawa ō uaua, kāore e taea e koe te mahi i tetahi mea, inā koa he taumaha ō kanohi, ā, he uaua ki te kōrero, ki te horomi kai rānei? Mena kua pāngia koe e ēnei momo wheako, he mea nui kia mōhio koe ki te mate e kōrerohia nei e tātou i tēnei rā, ko te 'Myasthenia Gravis'. Ahakoa he ahua tauhou tēnei, ki te mārama koe ki tēnei, ka kitea e koe ngā whakautu ki ngā pātai maha.
He aha te Myasthenia Gravis?
Ko te Myasthenia gravis, MG rānei, he mate pūnaha ārai mate . I roto i ngā kupu māmā, ko te wā tēnei e whakaeke hē ai te pūnaha ārai mate o tō tātou tinana, arā, te pūnaha ārai mate, i ngā wāhanga o tō tātou tinana. I roto i te MG, ka whakaekea e te pūnaha ārai mate ngā hononga i waenga i ō tātou io me ngā uaua.
Ka ngoikore haere ngā uaua e hono ana ki ō tātou wheua, ā, ka ngoikore haere tātou. Ko te nuinga o tēnei ka pā ki:
- Mō ngā uaua o ō kanohi, mata, kaki, ringa, me ngā waewae.
Tērā pea ka uaua ki a koe te mahi i ngā mea pēnei i tēnei ngoikore:
- Nekehia ō kanohi, kimo.
- Kia tūwhera ō kanohi.
- Whakaaturia ngā kare ā-roto rerekē mā tō kanohi.
- Ngaungauhia te kai, horomia, kātahi ka kōrero.
- Hiki ake ō ringaringa, hiki ake ō mea.
- Piki ake i te arawhata, whakatika ake i te tūru.
Ko te āhuatanga ahurei, tino nui hoki o tēnei mate , ko te kaha haere o te ngoikore o ngā uaua ina mahi koe, engari ka hoki mai anō ki te ora i muri i te wā okiokinga poto.
He mate pūmau tēnei. Ko te tikanga, kāore he rongoā kotahi e pai ana mō te katoa. Kaua e manukanuka, nā ngā maimoatanga tino whai hua o ēnei rā, ka taea e te tangata te whakahaere i ō rātou tohumate me te noho ora.
He aha ngā momo matua o te myasthenia gravis?
Āe, he maha ngā momo matua o tēnei mate. Kia kite tātou he aha ēnei.
| Momo mate (Momo) | Whakamārama Poto |
|---|---|
| Myasthenia Ārai Mate | Koinei te momo tino noa. Nā ētahi paturopi i hangaia e te pūnaha ārai mate o te tinana i puta ai. Kāore i te mārama te tino take. |
| Myasthenia o te Pēpi Hou | He mate rangitahi tēnei e puta mai ana i te pēpi e whiwhi ana i ngā paturopi mai i tētahi whaea e pāngia ana e te MG i te wā e hapu ana. I te whānautanga, ka tangi ngoikore pea te pēpi, ā, ka uaua ki te ngote. Ka ngaro atu ēnei tohu i muri i te toru marama pea. |
| Myasthenia whānau | Ehara tēnei i te mate pūnaha ārai mate. He mate onge tēnei e hua mai ana i te huringa ira. |
Ko te mate myasthenia gravis autoimmune tino noa kua wehea anō kia rua ngā momo matua.
Te Myasthenia Kanohi
He āhuatanga tēnei e ngoikore ai ngā uaua e neke ana i ngā kanohi me ngā kamo. Ka taea e tēnei te whakapiko i ō kamo, te uaua rānei ki te pupuri i ō kanohi kia tuwhera. Tērā pea ka pāngia ētahi tāngata e te tirohanga rua. Ko tēnei ngoikore o ngā kanohi te tohu tuatahi o te MG. Tata ki te haurua o te hunga whai āhuatanga nei ka whanake te tirohanga whānui i te mutunga.
Myasthenia Whānui
I tēnei āhuatanga, haunga ngā uaua o ngā kanohi, ka ngoikore hoki ngā uaua o te mata, te kaki, ngā ringa, ngā waewae, me te korokoro. Ka uaua pea te kōrero, te horomi kai, te hiki ake i ō ringa ki runga ake i tō mahunga, te whakatika ake i te tūnga noho, te hikoi tawhiti, me te piki arawhata.
He pēhea te whanaketanga o tēnei mate? He aha ngā mea e tupu ana i roto i ō tātou tinana?
Hei mārama ki tēnei, me tango he tauira iti. Whakaarohia ko te whanaungatanga i waenga i ō tātou io me ngā uaua he rite ki te whanaungatanga i waenga i te kaiwhiu me te kaihopu i roto i te whakataetae kirikiti.
1. Te kaiwhiu (io): Ko te io te mea e tuku karere ana ki te uaua kia "whakakorikori".
2. Te pōro (Acetylcholine): Ka tukuna tēnei karere mā roto i tētahi matū (neurotransmitter) e kiia nei ko te 'acetylcholine'. Koinei tō tātou 'pōro'.
3. Te karapu o te kaiwhiu (ngā kaiwhakawhiu): He wāhi motuhake kei te nikau hei hopu i tēnei 'pōro'. Ka kiia ēnei he 'kaiwhiu'. He rite tēnei ki te 'karapu' o te kaiwhiu.
I te nuinga o te wā, ka ōrite te 'pōro' (acetylcholine) e tukuna ana mai i te io ki te 'karu' (kaiwhakawhiwhi) i roto i te uaua. Koinei te wā ka whiwhi te uaua i te tohu kia kuhu. Ka tino tere te mahi, kāore he aukati.
Heoi, he rerekē te āhua o te tinana o te tangata e pāngia ana e te myasthenia gravis.
Ka hangaia e tā rātou pūnaha ārai mate ngā paturopi hē, ā, ka ārai, ka whakangaro rānei i ngā kaiwhakawhiwhi i roto i te uaua. Kātahi, ahakoa ka tukuna te pōro e te io, kāore he karapu hei hopu. Nō reira, kāore te uaua e whiwhi i te tohu tika, nō reira ka ngoikore. Ina mahi kaha koe, ka ngoikore haere te uaua nā te mea kāore e taea te hopu i te pōro. Ina okioki koe, ka taea e koe te whakamahi anō i te karapu, kia ora ai. Kei te mārama koe?
He aha ngā tohu matua o te myasthenia gravis?
Ka tīmata ohorere pea ngā tohu o te MG. Ka rerekē hoki te kaha i ia rā, i ia wā, i ia wā. He tokomaha te hunga e kaha ake ana i te tīmatanga o te rā, ā, ka ngoikore i te mutunga o te rā.
| Tohu | Whakamārama |
|---|---|
| Kamo kamo e takoto kau ana (Ptosis) | Te kamo e piko ana i roto i tētahi, i ngā kanohi e rua rānei. Koinei te tohu tōmua tino kitea. |
| Te tirohanga pōuri, te tirohanga takirua rānei | Ka taea e te ngoikore o ngā uaua e neke ana i ngā kanohi te whakararu i te tirohanga. |
| He uaua ki te kōrero, ki te horomi, ki te ngaungau rānei | Tērā pea ka puta ngā āhuatanga pēnei i te panoni o te reo i te wā e kōrero ana, te uaua ki te horomi, te piri o te kai, me te uaua ki te ngaungau. |
| He ngoikore i ngā ringa, i ngā waewae, me te kaki | Ka ngenge wawe ngā ringa i te wā e mahi ana i ngā mahi pēnei i te hiki, te heru i te makawe, te parai i ngā niho. He uaua ki te hikoi, he uaua ki te pupuri i te mahunga kia tika. |
| Te huringa o te āhua o te kanohi | Ki te kore e whakaatu i te āhua o tō kanohi i a koe e menemene ana, ka rite pea koe ki te "whakatenatena i te menemene". |
| Te uaua ki te manawa | He tino morearea, he āhuatanga tere hoki tēnei. Mēnā ka pāngia koe e te poto o te manawa nā te ngoikore o ngā uaua manawa, me haere tonu koe ki te Tari Ohotata (ETU) o te hōhipera. Ka kiia tēnei he 'Myasthenic Crisis'. |
Me pēhea te tautuhi tika a te tākuta i tēnei mate?
Mena kei a koe ēnei tohu, ka pātai tuatahi tō tākuta ki a koe mō tō hītori hauora, ā, ka whakahaerehia he whakamātautau tinana. Kātahi ka tonoa pea e rātou ētahi whakamātautau hei whakaū i te mate:
- Ngā whakamātautau toto: Ka tirohia ō toto mō ngā paturopi rerekē i kōrerotia i mua ake nei ('acetylcholine receptor antibodies' 'MuSK antibodies' rānei). Tata ki te 85% o te hunga whai MG kei roto i ō rātou toto ēnei paturopi.
- Ngā matawai whakaahua: Tērā pea ka mahia he matawai CT, MRI rānei hei tirotiro mō tētahi raruraru, mō tētahi pukupuku rānei (thymoma) i roto i tō repe thymus.
- Electromyography (EMG): He whakamātautau motuhake tēnei e rapu ana i ngā āhuatanga rerekē o te tukunga o ngā tohu hiko i waenga i ngā io me ngā uaua.
I runga i ngā hua o ēnei whakamātautau, ka whakatauhia e tō tākuta te taumata o tō mate, ā, ka tūtohu i te mahere maimoatanga tino tika māu.
He aha ngā maimoatanga mō tēnei?
Tuatahi, he mate ka taea te rongoā i te MG. Ahakoa kāore he rongoā, he maha ngā maimoatanga whai hua e wātea ana i ēnei rā hei āwhina i a koe ki te whakahaere i ō tohumate me te noho i tētahi oranga noa, ora hoki.
He maha ngā tikanga maimoatanga:
- Ngā rongoā:
- Ka whakapai ake ngā rongoā pēnei i ngā 'aukati cholinesterase' i te tuku tohu i waenga i ngā io me ngā uaua, ka whakanui ake i te kaha o te uaua.
- Ka whakaitihia e ngā rongoā ārai mate, pērā i ngā corticosteroids, te hanga o aua paturopi rerekē.
- Ngā paturopi monoclonal:He pūmua motuhake ēnei e hoatuhia ana mā roto i te uaua. Ka whakahaeretia e rātou te mahi a te pūnaha ārai mate.
- Te whakawhiti toto (Plasmapheresis): Ko te hono atu i a koe ki tētahi mīhini motuhake e tango ana i te wāhanga toto o tō toto kei roto ngā paturopi kino, ka whakakapi ki te toto hauora, ki tētahi otinga rānei.
- Ārai mate IV (IVIG): He werohanga ā-uaua o ngā paturopi mai i ngā kaituku hauora. Ka āwhina tēnei ki te pehi i te pūnaha ārai mate.
- Pokanga: Mō ētahi tāngata, inā koa ko te hunga he pukupuku thymus tō rātou, ka tangohia te repe mā te pokanga (he 'thymectomy'). Ka taea e tēnei te whakahaere nui i ngā tohumate.
Mā tō tākuta e whiriwhiri te maimoatanga tino tika mō tō āhua.
He aha tā tātou e taea ai mā tātou anō i a tātou e noho tahi ana me ngā tohumate?
I a koe e whiwhi ana i te maimoatanga, mā te hanga i ngā huringa iti ki tō momo noho ka māmā ake te noho me tēnei mate.
- Whakakorikori Tinana: Pātai atu ki tō tākuta, ā, me mahi he whakakorikori tinana māmā e tika ana māu . Mā tēnei ka whakapakari i ō uaua, ka whakangāwari i tō hinengaro, ā, ka hoatu he pūngao ki a koe.
- Āraia te wera: Ka taea e te wera nui te whakararu i ngā tohu. Nō reira, kaua e haere ki waho i te rā wera i te awatea. Ki te rongo koe i te wera, whakatakotoria he tauera kua rumakina ki te wai matao ki tō kaki me tō rae.
- Kai pai: Kai i tētahi kai taurite e nui ana te pūmua me te warowaihā kia mau tonu ai te hihiko.
- Whakamaheretia tāu mahi: Mahia ngā mahi e hiahia ana kia kaha rawa atu i te wā e nui ana tō kaha, arā, i te ata.
- He mea nui te okiokinga: Me whai wā poto mō te rā. Moe pai. Whakarongo ki tō tinana. Kaua e akiaki i a koe ki te mahi ina ngenge koe.
Karere Tangohia ki te Kāinga
- Ko te Myasthenia gravis (MG) he mate e puta mai ana i te ngoikore o tō tātou ake pūnaha ārai mate, engari ka taea te rongoā whai hua .
- Ki te pāngia koe e ngā tohu pēnei i te kamo e takoto kau ana, te tirohanga pōuri, te uaua ki te kōrero, ki te horomi rānei, te ngenge rerekē rānei e piki haere ana i te roanga o te rā, me toro atu ki te tākuta i runga i te wā tonu.
- Ki te pāngia koe e te uaua ki te manawa, haere tonu ki te Tari Ohotata (ETU) o te hōhipera, he āhuatanga ohorere hauora pea tēnei (myasthenic crisis) .
- Mā te maimoatanga tika, te whai i ngā tohutohu a tō tākuta, me te hanga i ngā huringa ngāwari o te noho, ka taea e te nuinga o te hunga whai MG te noho ora tonu me te ora kaha . Kāore he take e wehi ai.
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