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He aha te MELAS Syndrome? Kia mārama tātou!
Ki te whakarapopototanga, ko te MELAS Syndrome he mate e puta mai ana ina kore e mahi tika ngā wāhanga iti o roto i ō tātou pūtau e kiia nei ko te mitochondria . Whakaarohia he rite ki ēnei tipu hiko iti e hanga pūngao ana mō ō tātou pūtau. Ina kore e mahi tika ēnei tipu hiko, ka rongo te tinana katoa. Ka hangaia te kupu MELAS mā te whakakotahi i ētahi āhuatanga matua o tēnei mate:- Te encephalomyopathy mitochondrial : E pā ana tēnei ki tētahi mate e pā ana ki te roro me ngā uaua e pā ana ki te mitochondria .
- Te waikawa waikawa lactic : Koinei te wā e kohia ai he matū e kiia nei ko te waikawa lactic i roto i tō tātou tinana. I te nuinga o te wā, ka puta te waikawa lactic hei hua taha ina whakamahia e tātou ngā warowaihā e kainga ana e tātou hei hanga pūngao, engari i roto i tēnei mate, ka kohia nui rawa.
- Ngā wā e rite ana ki te whiu : Koinei te mea tino kitea. Te āhua nei he rite ngā tohu ki te whiu , engari ehara i te mea he whiu tūturu. Ka puta pinepine pea ēnei.
He pēhea te noa o tēnei āhuatanga?
Ehara te mate MELAS i te mate tino noa. E kiia ana kotahi i roto i te 4,000 tāngata e pāngia ana e tēnei mate. Ahakoa ka pā ki te katoa, ko te mea motuhake ko te tuku iho o tēnei mate mai i te whaea. Kāore e tukuna mai i te pāpā ki te tamaiti.
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Check Availability →He aha ngā tohu o te Mate MELAS?
E ai ki tā mātou i kōrero ai i mua ake nei, nā te mea kei roto tata i ngā pūtau katoa o te tinana ngā mitochondria, ka pā pea te MELAS Syndrome ki tētahi okana, ki tētahi kiko rānei. Nō reira, ka rerekē ngā tohu i waenga i te tangata me te tangata. Heoi, mō te tini o te tangata, kāore ngā tohu i te tino kino hei whakaputa tohu neurological.Ka kitea te mate huka me te ngaronga o te rongo. He tohu iti anō hoki tēnei hei whakaaroaro māu mō tēnei mate.Ngā raruraru me ngā tohu e pā ana ki te roro (neurological)
Ko te nuinga o ēnei ka puta mai i ngā wā e rite ana ki te whiu. Anei ētahi mea ka pā mai:- Ka puta ngā huringa ohorere o ngā whanonga .
- Ka pōhēhē te hinengaro, kāore e taea te mārama ki te mea e tupu ana.
- Te pōuriuri, te ngaro rānei o te taurite .
- Ka pararutiki tetahi wāhanga o te tinana, hei tauira te ringa, te waewae rānei (he pararutiki) .
- He rite ki te māuiui, te ngau rānei i tetahi taha o te tinana.
- Ka haere mai, ka haere atu ngā mamae o te upoko , ā, i ētahi wā ka rerekē pea te tirohanga, te kōrero rānei .
- Kei te haere mai te mate urutā ( ngā haurangi ) .
- Ngā kupu pōturi , ngā uauatanga ki te kōrero.
- Ka puta ngā raruraru tirohanga – te tirohanga takirua, te ngaro katoa rānei o te tirohanga.
- Te ngoikore o te tinana i tetahi taha.
Ki te pāngia koe e tētahi, e ētahi rānei o ēnei tohu i te wā kotahi, kaua e warewaretia. He pai ake te rapu tohutohu hauora tonu.
Ngā tohu e pā ana ki ētahi atu wāhanga o te tinana
Haunga ngā tohu e pā ana ki te roro, ka pā pea tēnei mate ki ētahi atu wāhanga o te tinana.- Te roa poto – Tērā pea he poto ake ētahi tāngata i te toharite.
- Ngā wā ruaki auau .
- Mamae puku .
- E tino ngenge ana ahau, me te mea kāore he kaha i ahau ki te mahi i tetahi mea.
- Te māuiui o ngā uaua , arā, te āhua e wiriwiri ana ngā uaua.
He aha te take e puta ai te mate MELAS? He aha te take?
Ko te take matua mō tēnei ko ētahi huringa o roto i ō tātou ira (ngā rerekētanga ira) . Kei roto i tō tātou DNA ngā tohutohu e hiahiatia ana e ō tātou pūtau katoa kia mahi. Mena he huringa, he whakarerekētanga rānei, i roto i tēnei putunga mōhiohio e kiia nei ko te DNA, kāore e taea e ngā pūtau te mahi tika. Ko te mea anō ka tupu i roto i te Mate MELAS. Ko te mea nui, ki te mea kei a koe te Mate MELAS, ka riro mai i a koe taua rerekētanga ira mai i tō whaea.Ka puta tēnei i te huringa o te DNA i roto i te mitochondria.Ko wai te mea tino mōrearea mō tēnei?
Ko te take matua mō tēnei mate ko te hītori whānau . Ko te tikanga, mēnā kei te whaea, kei tētahi whanaunga rānei o te taha whaea tēnei mate, tera pea ka pāngia anō hoki ngā tamariki e tēnei mate.He aha ngā raruraru ka pā mai i te MELAS Syndrome?
Ehara te Mate MELAS i te mea e whakaatu noa ana i ētahi tohu, kātahi ka mutu. Ka taea e ia te arahi atu ki ētahi atu raruraru , arā, ki ētahi atu raruraru hauora.- Ka arahi pea tēnei ki te hauātanga hinengaro , me te mate wareware pea.
- Mate huka (Diabetes Mellitus) .
- Ngā raruraru whakarongo , tae atu pea ki te ngaronga o te whakarongo katoa.
- Ngā raruraru uaua – ngā āhuatanga pēnei i te māuiui o te uaua, te ngaronga o te mana whakahaere uaua.
- Ngā raruraru haere me te taurite .
- Te ngaronga o te tirohanga .
- Ngā raruraru ate .
Me pēhea te tautuhi a ngā tākuta i tēnei?
Mena kei a koe ēnei tohu, ka pātai tuatahi te tākuta ki a koe mō ō tohu, me te mea kua pāngia tētahi o tō whānau e ēnei āhuatanga (hītori hauora). Kātahi ka tonoa e rātou he momo whakamātautau.Ngā whakamātautau tātaritanga:
- Ngā whakamātautau ira: Koinei te mea e whakatau ana mēnā kei te kitea te rerekētanga ira.
- Ngā whakamātautau whakaahua: Hei tauira , ka taea te mahi i tētahi matawai MRI (Magnetic Resonance Imaging) hei tirotiro i te āhua o te roro. Ka taea hoki e tēnei te tirotiro mō ngā kino o te roro i puta mai i ngā āhuatanga rite ki te whiu.
- Ngā whakamātautau wai cerebrospinal, mimi, me te toto: Ka taea e ēnei te tirotiro i ngā mea pēnei i te taumata o te waikawa lactic.
- Kohikohi uaua: I ētahi wā, ki te tika, ka tangohia he wahi uaua iti ka tirotirohia i raro i te karuārai hei tirotiro mēnā he huringa kei roto i te mitochondria.
He aha ngā maimoatanga mō te MELAS Syndrome?
Engari, kāore anō kia kitea he rongoā mō te MELAS Syndrome i tēnei wā. Ko te tikanga, kāore he rongoā tuturu. Heoi anō, kei reira ngā maimoatanga hei āwhina i te whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga . Ka ngana ngā tākuta ki te whakaiti i te pānga o ēnei tohu.Ngā rongoā mō ngā tohu:
Ka tūtohu pea tō tākuta i ngā rongoā pēnei i ēnei:- Ngā rongoā ārai-hōhā: Heoi, kāore te rongoā valproate e tika ana mō ēnei tūroro, nō reira ka tohua e ngā tākuta tētahi atu rongoā e tika ana.
- Coenzyme Q10, L-carnitine rānei: He matū rite ki te huaora ēnei e whakaponohia ana ka whakanui ake i te whakaputanga pūngao i roto i te mitochondria me te whakaroa i te haere whakamua o te mate.
- L-arginine me te L-citrulline: He waikawa amino ēnei. Kua whakaatuhia e ngā rangahau ka taea e rātou te āwhina ki te whakaiti i te auau o ngā wā e rite ana ki te whiu me te whakaiti i te kino e pā ana ki te roro.
- Te Inihurini, te Metformin rānei: Mena he mate huka tōu, ka taea te hoatu i ēnei rongoā hei whakahaere i tōna mate.
- Ngā Werohanga: Me whiwhi te hunga whai mate MELAS Syndrome i ā rātou werohanga tamarikitanga i te wā e taea ai. He mea nui anō hoki kia whiwhi i te werohanga COVID-19, te werohanga rewharewha, me te werohanga niumōnia i ia tau, nā te mea ka kino ake pea tō rātou āhua i ngā mate urutā.
Ngā maimoatanga kore-rongoā:
Hei tāpiri atu ki ngā rongoā, ka tūtohu pea te tākuta i ētahi atu rongoā pēnei i:- He mahinga whakakori tinana tika hei whakapakari i ngā uaua me te pupuri i te mahi pai.
- Mena he ngoikore tō turi, ka taea e koe te tiki āwhina mai i ngā taputapu pēnei i ngā whakatō cochlear .
Mena kei a au te MELAS Syndrome, he aha ngā mea ka tumanakohia e au?
Nā te mea he mate kore e taea te rongoā tēnei, me whakahaere e koe te āhua mō te toenga o tō oranga . Ehara i te mea ngāwari, engari ka taea te mahi mā te tohutohu hauora me te tautoko tika. Nā te mea ka pā tēnei mate ki tētahi okana, ki tētahi kiko rānei o te tinana, me hiahia pea koe ki te āwhina a tētahi rōpū kaiwhakarato hauora . Hei tauira:- Ngā tohunga roro
- Ngā tohunga ira
- Ngā tohunga ngakau
- Ngā kaiwhakaora tinana – mō te mahi a ngā uaua me ngā hononga
- Ngā kaiwhakaora mahi – ngā tāngata e āwhina ana i te tangata ki te mahi i ngā mahi o ia rā kia māmā ake
- Ngā kaiwhakaora kōrero – mō ngā uauatanga kōrero
- Ngā kaimahi hapori – mō te tautoko hinengaro me te tautoko pāpori
Kia pēhea te roa ka taea e koe te ora me te Mate MELAS?
He pātai tēnei e pātaihia ana e te tini tāngata. He uaua ki te hoatu i tētahi whakautu tika ki te pātai "Kia pēhea te roa e ora ai te tangata e pāngia ana e te Mate MELAS?". Nā te mea he rerekē rawa i ia tangata, i ia tangata. He iti ake ngā tohu o ētahi tāngata, he nui ake ngā tohu o ētahi. He rerekē anō hoki ngā urupare ki te maimoatanga. Ahakoa i roto i te whānau kotahi, ka rerekē pea te āhua o ngā tohu me te tere o te haere whakamua o te mate. Heoi, me mārama tātou ki te pono. He mate te Mate MELAS ka mate pea i ētahi wā. Arā, ka taea e ia te whakararu i te ora. Koia te mea nui kia mōhio pai ki tēnei mate, kia pai ai te whakahaere.Ka taea te ārai i tēnei?
Engari, kāore he huarahi hei ārai i te MELAS Syndrome i tēnei wā nā te mea he mate ira. Heoi, ki te mea he mate ira pēnei kei tētahi o te whānau, he mea nui kia tūtaki te hunga o taua whānau ki tētahi kaitohutohu ira me te rapu tohutohu. Ka taea e rātou te whakarato kōrero mō te mōrearea o te tuku iho i tēnei mate ki ngā tamariki ā muri ake nei, me ngā mahi ka taea te mahi hei ārai.Me pēhea taku tiaki i ahau anō hei tangata e pāngia ana e te Mate MELAS?
Mena kei a koe te mate MELAS, he mea tino nui kia tiakina koe e koe anō.- Kia tika te whai i ngā tohutohu a tō tākuta. Haere ki te whare hauora i te wā tika, tangohia te rongoā kua tohua kia tika. Tērā pea ka kī atu te tākuta kia kite koe i a ia i te iti rawa kotahi i te tau.
- Me mahi ētahi whakamātautau i ia tau . Hei tauira:
- Te āhua o te ngākau
- Ngā taumata huka toto
- Whakarongo
- Ngā kanohi
- Me mutu rawa te inu waipiro me te momi hikareti, nā te mea ka taea e ēnei mea te whakakino i ngā mitochondria.
- Me tiki tō werohanga ā-tau mō te rewharewha, te werohanga mō te niumōnia, me ētahi atu werohanga i tūtohutia e tō tākuta i te wā tika.
He aha ngā pātai me pātai atu e au ki taku tākuta?
He mea noa te pōuri ina rongo koe kei te pāngia koe, kei tō tamaiti rānei e te mate mitochondrial. Kāore pea koe i rongo mō te mitochondria i mua. Koia te mea nui kia mārama te mōhiotanga mō te MELAS Syndrome me tōna tikanga. Pātai atu ki tō rōpū hauora mō ēnei mea katoa. Kaua e wehi ki te pātai. Anei ētahi pātai ka taea e koe te pātai:- "He aha ngā tohu, ngā tohu rānei e tohu ana i tētahi āhuatanga ohorere hauora e tata mai ana?"
- "Ki te puta mai tētahi mea pēnei, me waea atu ahau ki te tākuta, me haere tika atu rānei ki te rūma whawhati tata?"
- "He mahere kai motuhake kei reira hei āwhina i tēnei mate?"
- "He aha ngā rongoā, ngā maimoatanga rānei e taunaki ana koe māku? He aha ngā pānga taha ka pā mai?"
- "Me whai wāhi taku whānau ki te whakawā ira?"
- "E āhei ana ahau ki te whai wāhi atu ki ngā whakamātautau haumanu?"
- "Ka taea e koe te whakaaro mai i tētahi rōpū tautoko ka taea e mātou ko tōku whānau te haere atu?"
Ngā mea hei maumahara mā tātou mai i tēnei (Karere hei tango ki te kāinga)
Āe, me whakarāpopoto tātou i ētahi o ngā kōrero nui i kōrerohia e tātou i te rā nei:- He mate ira tino kino engari onge te mate MELAS e puta mai ana i te kore mahi tika o ngā mitochondria, arā, ngā pūtau whakaputa pūngao i roto i ō tātou pūtau.
- Ko te pūnaha io me ngā uaua te tino pānga. Ko ngā tohu matua ko ngā mate pēnei i te whiu me te kohikohinga o te waikawa lactic i roto i te tinana.
- Ka taea te tuku iho i tēnei mate mai i te whaea ki te tamaiti.
- Ahakoa kāore anō kia puta he rongoā katoa i tēnei wā, kei reira ngā maimoatanga hei whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga.
- He mea tino nui te tautoko a tētahi tīma hauora motuhake, te tautoko a te whānau, me ngā rōpū tautoko i te wā e noho tahi ana koe me tēnei mate.
- Kaua e mangere ki te pātai, ki te rapu mōhiohio, me te tiki i te āwhina e hiahiatia ana e koe.
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