He aha te Mate Charcot-Marie-Tooth? Tohutohu, Take, me te Maimoatanga

Ko te mate Charcot-Marie-Tooth (CMT) tētahi rōpū o ngā āhuatanga kua oti te whakawhiwhi e pā ana ki ngā pūnaha pūngao o ngā ringa me ngā waewae. Ko ēnei pūnaha pūngao e kawe ana i ngā tohu i waenganui i tō roro me ō uaua, ā, e āwhina ana i a koe ki te neke me te whakarongo ki ngā āhuatanga penei i te pa me te pāmahana.

I huaina ki ngā tohunga rongoā tokotoru i whakaatu tuatahi i te tau 1886, ko te CMT te mate neurology tuku iho tino noa. E pā ana ki te 1 i roto i te 2,500 o te iwi o te ao. Ahakoa ka rongo te ingoa he wehi, he tokomaha ngā tāngata e ora ana me te CMT i ngā oranga tino whānuitia, mahi, me te tautoko tika.

He aha te Mate Charcot-Marie-Tooth?

Ka puta te CMT ina kore ngā ira e kawea ana te tiaki i ngā pūnaha pūngao o waho e mahi tika ana. Ko ō pūnaha pūngao o waho he rite ki ngā taura hiko e hono ana i tō roro me tō tuaiwi ki ō uaua me ō tūmomo karakia puta noa i tō tinana.

I roto i te CMT, ka pakaru haeretia ēnei pūnaha pūngao, kāore rānei e whanake tika. Ko te kino nei e pā ana ki ngā pūnaha pūngao roa rawa tuatahi, koia te take i timata ai ngā tohu i ō waewae me ō ringa. Ka haere haere te āhuatanga i te wā, a ka rereke te kaha mai i te tangata ki te tangata.

Kāore te CMT he mate kotahi engari he whānau o ngā āhuatanga e hono ana. He maha ngā momo, me te CMT1 me te CMT2 te tino noa. Ka pā ia momo ki ngā pūnaha pūngao i ngā huarahi iti rerekē, engari he rite tonu ngā tohu me ngā tauira o te whanaketanga.

He aha ngā Tohutohu o te Mate Charcot-Marie-Tooth?

Ka whanake haeretia ngā tohu o te CMT, ā, ka timata i te tamarikitanga, i te taitamarikitanga rānei, ahakoa ka puta i tetahi tau.

Ko ēnei ngā tohu tino noa ka pā ki a koe:

• Te ngoikore o ō waewae me ō pūehu, e āhei ai te uaua ki te whakaara i ō maihao ina haere
• Te tūtohu rānei te tūtaki pinepine nā te heke o te waewae
• Nga kopiko teitei i ō waewae, i ngā waewae papatahi rānei
• Nga maihao hāmerā, i ngā maihao piko rānei
• Te ngoikore o ngā uaua i ō waewae, e hanga ana i te ahua "waewae toroa"
• Te mānukanuka, te iti rānei o te pūāhua i ō waewae me ō ringa
• Te uaua ki ngā mahi motuka pai penei i te taikuru i ngā kakahu, i te tuhituhi rānei
• Ngā mamae o ngā uaua, inā koa i ō waewae
• Ngā ringa me ngā waewae makariri nā te ngoikore o te rere o te toto

I te whakawhānui haere o te mate, ka kite pea koe i te ngoikore o ō ringa me ō ringa. Ka whanake etahi tangata i te tauira haere motuhake e kiia nei ko te "haere tapawha", i te wa e whakaara ake ai rātou i ō ratou turi i teitei atu i te noa kia kaua e hopu i ō ratou maihao ki te whenua.

He mea nui kia mahara ko te CMT e pā ana ki te katoa i te rerekē. He iti ngā tohu o ētahi tangata kaore rānei e pā ki ō rātou oranga o ia rā, ā, ko ētahi atu pea ka hiahia ki ngā taputapu awhina penei i ngā pūmau, i ngā awhina haere rānei. Ko te whakawhānui he puhoi, he tūpono, e āhei ai te whakatakoto mahere me te whakahaere.

He aha ngā momo Mate Charcot-Marie-Tooth?

Ka wehea te CMT ki ētahi momo matua e whakaū ana i te āhua o te pakaru o te io me ngā ira e pā ana. Ka āhei te mārama ki tō momo motuhake ki te arahi i ngā whakatau ātete me te hoatu i tētahi whakaaro pai ake mō te aha e tatari ana.

Ko ngā momo e rua tino noa ko:

CMT1 e pā ana ki te paparanga myelin, arā, te hipoki tiaki kei runga i ngā muka io. Whakaarohia he rite ki te whakamarumaru kei runga i te uea hiko. Ina pakaru tēnei hipoki, ka whakaitihia te tere o ngā tohu io. Ka tino pā te CMT1 ki ngā tohu nui ake, ā, e 60% pea te nui o ngā keehi CMT katoa.

CMT2 ka whakaraweke tika i te muka io te uaua (e kiia nei ko te axon) kaua ko te hipoki tiaki. Ko te momo tenei te nuinga o te wa ka timata i muri mai, a ka taea te haere atu i te CMT1. Ko te hunga e pangia ana e te CMT2 te nuinga o te wa ka mau tonu te nui o te uaua i o ratou waewae raro.

Ko ētahi atu momo kaore i te tino noa ko:

• CMT3 (e kiia ana hoki ko te mate a Dejerine-Sottas), he momo kino e tīmata ana i te wā tamaiti
• CMT4, kei roto i ētahi momo iti ka taea te whakaeke i ētahi atu tohu
• CMTX, he momo hono-X e pā ana ki ngā tāne nui atu i ngā wāhine

He take tukuwhenua motuhake me te tauira tukuwhenua mō ia momo. Ka taea e tō tākuta te āwhina ki te whakatau i te momo kei a koe mā te whakamātautau ira, he mea nui mō te whakarite whānau me te mārama ki tō whakatau.

He aha ngā take o te mate a Charcot-Marie-Tooth?

Ko te CMT te take o ngā rerekētanga ira kei roto i ngā ira e tino nui ana mō te mahi noa me te tiaki i ngā uaua o te taha. Ka whakaroa enei huringa ira te kaha o te uaua ki te tuku tohu pai, ki te pupuri rānei i tōna hanganga i te wā.

Neke atu i te 40 ngā ira rerekē kua honoa ki ngā momo CMT. Ko ngā ira tino pāngia ko te PMP22, MPZ, me te GJB1, engari he maha atu ētahi ka taea te whakaeke i te āhuatanga. He mahi motuhake tō ia ira i te mahi o te uaua, koia te take ka taea e ngā rerekētanga rerekē te arahi ki ngā tohu iti rerekē.

Ko te mea e tino uaua ai te CMT ko te mea ahakoa i roto i te whānau kotahi, ka rerekē ngā wheako o te hunga e whai ana i te rerekētanga ira kotahi ki te mate. Ka iti pea ngā tohu o ētahi, ka nui ake te pānga o ētahi atu. Kei te mahi tonu ngā kairangi kia mōhio ai he aha te take o tēnei rerekētanga.

Ko ngā rerekētanga ira e whakaeke ana i te CMT ka pā ki ngā pūmua e tino nui ana mō te hauora o te uaua. Ka āwhina ētahi pūmua ki te pupuri i te hipoki myelin, ka tautoko ētahi atu i te muka uaua anō, ā, kei roto ētahi atu i te whakaputa kaha o te uaua, i ngā pūnaha kawe rānei.

Nōhea te Tiro ki te Tūroro mō te Mate Charcot-Marie-Tooth?

Me whakaaro koe ki te tiro atu ki te taakuta mena ka kite koe i te ngoikore roa o ō waewae, o ngā ringa rānei, ā, tērā pea ka pā ki ō mahi o ia rā. Ka taea e te aromatawai wawe te awhina i te kimi i te take me te tīmata i ngā rautaki whakahaere tika.

Ko ēnei ngā tohu motuhake e hāngai ana ki te tiaki hauora:

• Te tūtohu rānei te hinga, ina koa ki te kaha ake te tūtohutanga
• Te uaua ki te whakaara i ō maihao ina haere, te āwangawanga rānei o ō waewae
• Te ngoikore haere o ō ringa e whakaheke ana i ngā mahi penei i te tuhituhi, te pupuri rānei
• Te ngenge rānei te wiri i ō ringa, i ō waewae rānei kaore e ngaro
• Ngā huringa i te āhua o ō waewae, pēnei i te whanake o ngā kopiko teitei
• Te mamae o ngā uaua, te mamae rānei i ō waewae e whakaroa ana i te moe, i te mahi rānei
• He hītori whānau o ngā tohu rite i ngā mātua, i ngā teina rānei

Kaua e tatari mena kei te pāngia koe e te tere o te whanaketanga o ngā tohu, te ngoikore rānei e pā ana ki tō kaha ki te mahi, ki te koa ki ngā mahi rānei. Ahakoa ka haere māori te CMT, ka taea e ētahi momo te tere ake, ā, ka taea e te whakauru wawe te whakarereke i tō kounga o te ora.

Mena he hītori whānau o te CMT, ka taea e te tohutohu ira te awhina ia koe ki te mārama ki ō tūponotanga, ki ō kōwhiringa rānei, ahakoa kaore koe i te whai tohu i tēnei wā.

He aha ngā Tūponotanga mō te Mate Charcot-Marie-Tooth?

Ko te tūponotanga matua mō te CMT ko te whai i te hītori whānau o te āhuatanga, nā te mea he mate whakawhitia.

Ko ngā tūponotanga matua ko:

• He te mātua kei a ia te CMT (te tauira tuku iho tino noa)
• He teina, he tuakana rānei, he whānau atu anō kei a rātou te CMT
• He tane (mō ngā momo e hono ana ki te X pēnei i te CMTX)
• He mātua e mau ana i ngā ira CMT tūkino

Ko te nuinga o ngā momo CMT e whai ana i te tauira tuku iho ā-tinana rangatira, ā, ko te tikanga, kotahi noa te kape o te ira kua hurihia e hiahiatia ana mai i tētahi o ngā mātua hei whakawhanake i te āhuatanga. Ki te mea he CMT kei tētahi mātua, 50% te tūponotanga o ia tamaiti ki te whiwhi.

Ko ētahi momo iti ake e whai ana i ngā tauira tūkino ā-tinana, kei reira ngā mātua e rua e meinga ana kia mau te ira hei āhuatanga mō te tamaiti. I enei take, ko ngā mātua kaikawe kaore e tino kitea ngā tohu.

He mea tika kia mōhio ko te 10% pea o ngā keehi CMT e puta ana nā ngā huringa hou, ko te tikanga ka puta mai rātou i ngā whānau kaore he hītori o mua o te āhuatanga. Ka kiia tēnei he huringa de novo, ā, ahakoa he iti ake te noa, he wāhanga noa ia o te rerekētanga ira.

He aha ngā raruraru pea o te mate Charcot-Marie-Tooth?

Ahakoa kaore te CMT e mate kino, ka taea e ia te arahi ki ngā raruraru e pā ana ki tōu nekehanga me te kounga o te ora. Ko te mōhio ki ēnei take pea ka taea te āwhina i a koe me tō rōpū hauora ki te tango i ngā mahi aukati.

Ko ngā raruraru tino noa ka tūtaki pea koe ki roto:

• Ngā āhuatanga waewae pēnei i ngā kopiko teitei, ngā maihao hammer, ngā waewae papatahi rānei
• Te piki o te tūponotanga o ngā hinga nā te ngoikore o te uaua me ngā take toenga
• Te mamae roa i ō waewae, i ō waewae rānei, i ō ringa rānei
• Te uaua ki ngā pūkenga miihini pai e pā ana ki te mahi, ki ngā mahi o ia rā rānei rānei
• Te ngenge mai i te kaha atu e hiahiatia ana mō te nekehanga
• Ngā raruraru kiri i ō waewae nā te iti o te āhuatanga
• Ngā raruraru hono mai i ngā tauira hikoi kua hurihia

Ko ngā raruraru iti ake, engari nui ake te kino, ka uru ki roto:

• Te koikoi o te tuawhenua (kōroke o te tuawhenua) i ētahi momo onge
• Ngā raruraru o te manawa mehemea ka pā te āhuatanga ki ngā uaua o te manawa
• Te ngaro o te rongohere i ētahi momo CMT
• Te dysplasia o te hope i ngā momo tino kino i te tamarikitanga

Ko te rongo pai, ko te nuinga o ngā raruraru ka taea te whakahaere pai me te tiaki tika. Ko te tirotiro tonu e tō rōpū hauora, te whakamahinga tika o ngā taonga tautoko, me te noho mahi i roto i ō kāha ka āwhina i te aukati, i te whakaiti rānei i te maha o ēnei take.

Me pēhea te aukati i te mate Charcot-Marie-Tooth?

No te mea he āhuatanga ira te CMT, kaore e taea te aukati i te tikanga noa. Heoi, ki te whai koe i te hītori whānau o te CMT, ki te whakarite rānei koe ki te whānau tamariki, ka taea e te tohutohu ira te awhina i a koe ki te mārama ki ō kōwhiringa me te whakatau whakamārama.

Ka taea e te tohutohu ira te whakarato i ngā mōhiohio whai hua mō:

• Tō tūponotanga ki te whanake i te CMT mehemea he hītori whānau tōu
• Te āhei o te tuku i te CMT ki ō tamariki
• Ngā kōwhiringa whakamātautau ira e wātea ana
• Ngā kōwhiringa whānau mehemea kei te manukanuka koe ki te tuku i te āhuatanga
• Ngā wāhi whakamātautau i mua i te whānautanga

Ki te whai koe i te CMT, ka taea e koe te mahi i ētahi mahi hei aukati i ngā raruraru me te pupuri i tō kounga o te ora. Hei tāpiri atu ki te noho mahi tinana i roto i ō kāha, te whakamahi i ngā taputapu tautoko tika, me te mahi tahi me ngā tohunga hauora hei whakahaere i ō tohu.

Ko te whakauru wawe me te whakahaere tika ka taea te whakaheke i te tere o te whanaketanga o ngā raruraru, ahakoa kaore e taea te aukati i te āhuatanga ira taketake.

Me pēhea te whakamātautau i te mate Charcot-Marie-Tooth?

Ko te whakamātautau i te CMT e whakauru ana i ētahi kaupae, te tīmatanga me te aromatawai tika o ō tohu me te hītori whānau. Ka hiahia tō tākuta ki te mārama ki te wā i tīmata ai ō tohu, me pēhea te whanaketanga, me te mea kei te whai tetahi i roto i tō whānau i ngā take rite.

Ko te tikanga o te tukanga whakamātautau:

Te whakamātautau tinana: Ka whakamātautau tō tākuta i te kaha o ō uaua, ngā mahi o ngā uaua, me te pūāhua. Ka aro nui rātou ki ō waewae me ō ringa, ka rapu i ngā tohu āhuatanga penei i te ngaro o ngā uaua, ngā āhuatanga o ngā waewae, te iti rānei o ngā mahi o ngā uaua.

Ngā rangahau arahi uaua: Ka inehia e ēnei whakamātautau te tere me te whai hua o te tuku tohu hiko e ō uaua. Ka whakanohoia ngā ira hiko ki runga i tō kiri, ā, ka whakamahia ngā pūkaha hiko iti hei whakaohooho i ō uaua. Ka taea e tēnei whakamātautau te āwhina ki te whakatau i te momo CMT pea kei a koe.

Te Electromyography (EMG): Ka inehia e tēnei whakamātautau te mahi hiko i roto i ō uaua. Ka whakauruhia he ira ngira angiangi ki roto ki tō uaua hei tuhi i tōna mahi hiko i te wā e takoto ana, ā, i te wā e whakapakari ana.

Te whakamātautau ira: Ka taea e ngā whakamātautau toto te tautuhi i ngā rerekētanga ira motuhake e pā ana ki te CMT. Koinei te huarahi tino whakatau kia taea ai te whakamātautau i te āhuatanga me te whakatau i te momo kei a koe.

I ētahi wā, ka tūtohu pea tō tākuta i te tātaritanga uaua, kei reira te tangohia ai he kōwae iti o te kiko uaua ka tirohia i raro i te microscope. Heoi, he iti ake te noho o tēnei inaianei kua whānuitia te whakamātautau ira.

Ka roa pea te tukanga whakamātautau katoa i ngā wiki maha, i ngā marama rānei, inā rānei he whakamātautau ira. Ka tīmata pea tō tākuta ki ngā take ira noa me te mahi i ngā wāhi iti ake e hiahiatia ana.

He aha te rongoā mō te mate Charcot-Marie-Tooth?

Ahakoa kāore he rongoā mō te CMT i tēnei wā, he maha ngā rongoā whai hua ka taea te āwhina i te whakahaere i ō tohu me te pupuri i tō kounga ora. Ko te whāinga o te rongoā ko te pupuri i a koe kia kaha te mahi me te motuhake, me te aukati i ngā raruraru.

Ka whai pea tō mahere rongoā i ngā huarahi maha:

Whakaora tinana te mea tino nui te nuinga i te whakahaere i te CMT. Ka taea e te kaiwhakaora tinana te whakaako i a koe ki ngā mahi whakakori hei pupuri i te kaha o ngā uaua, hei whakapai ake i te toenga, ā, hei ārai i ngā kōpū. Ka āwhina hoki rātou ki a koe ki te ako i ngā tikanga nekehanga haumaru, ā, ka tūtohu i ngā taputapu āwhina e tika ana.

Whakaora mahi te arotahi ki te āwhina i a koe ki te pupuri i te motuhake i ngā mahi o ia rā. Ka taea e te kaiwhakaora mahi te tuku i ngā taputapu me ngā tikanga whakarite mō ngā mahi penei i te kakahu, te tunu kai, me te mahi. Ka tūtohu pea rātou i ngā taputapu motuhake, ngā matau pātene, me ētahi atu taputapu hei whakamaama i ngā mahi o ia rā.

Ngā taputapu orthotic pēnei i ngā orthoses waewae-waewae (AFOs) ka taea te āwhina i te tautoko i ngā uaua ngoikore, ā, te whakapai ake i tō haere. Ka taea e ēnei kākahu te ārai i te heke o te waewae, ā, te whakaiti i te tūponotanga o te hinga. Ka taea hoki e ngā orthotics hanga ritenga te āwhina i ngā kōtiti o te waewae, ā, te whakarato i te tautoko pai ake.

Rongoā pea ka tohua hei whakahaere i ngā tohu motuhake. Ka taea e ngā rongoā mamae te āwhina i te mamae neuropathic, ā, ko ngā kaiwhakahaere uaua pea ka whai hua mō ngā kopu. Heoi, me karo i ētahi rongoā e whakamahia nuitia ana mō ētahi atu āhuatanga i roto i te CMT, i te mea ka kaha ake te kino o te whara o ngā io.

Taha pea ka tūtohuhia mō ngā kōtiti waewae kino, me ētahi atu raruraru. Ka uru ngā tukanga ki ngā whakawhiti uaua, ngā hononga hono, me ngā whakatikatika i ngā kōtiti wheua. Ahakoa kaore te taa i te rongoa i te CMT, ka taea te whakapai ake i te mahi me te wātea i roto i ngā take i tīpakohia.

Me pēhea te tango i te maimoatanga kāinga i te wa o te mate Charcot-Marie-Tooth?

Ko te whakahaere i te CMT i te kāinga kei roto te hanga i te taiao tautoko, me te whakawhanake i ngā mahi o ia rā e mahi tahi ana me ō pūkenga, kaua e whakapae ki a rātou. Ka taea e ngā huringa iti te whakarereke nui i tō wātea me tō haumaru.

Ko ēnei ngā kaupae mahi ka taea e koe te tango i te kāinga:

Whakakorihia te tinana i ia wā i roto i ō uara. Ka āwhina ngā mahi ngawari penei i te kauhoe, te hikoi paikere, te hikoi ki te pupuri i te kaha o ngā uaua me te hauora o te ngakau. Kaua e mahi i ngā mahi kaha e piki ai te tūpono o te hinga, te whara rānei.

Pupuri i te tiaki pai o ngā waewae mā te tirotiro i ō waewae i ia rā mō ngā kotinga, ngā pupuhi, ngā whara rānei. I te mea ka iti pea te pūāhua, ka kore pea e mōhio koe ki ngā whara iti ka pakaru pea ki te kore e whakaorahia. Pupuri i ō waewae kia ma, kia maroke, kia kakahuria hoki ngā hu e tau.

Me waiho tō kāinga hei wāhi haumaru mā te tango i ngā mea ka tūtaki, penei i ngā papatahi ngāwari te neke atu rānei ngā taura hiko. Tāruatia ngā papa i runga i ngā kaupae me ngā pou āwhina i roto i ngā ruma kaukau. He mea nui te mārama pai i roto i tō kāinga, ina koa i ngā korowhiti me ngā kaupae.

Whakamahia ngā taputapu āwhina penei i te whakahau a tō rōpū hauora. Ka uru pea tenei ki ngā tokotoko, ngā kaihaere, ngā taputapu motuhake rānei mō ngā mahi o ia rā. Kaua e titiro ki ēnei hei whakatau, engari hei taputapu hei āwhina i a koe ki te noho mahi me te motuhake.

Whakahaerehia te ngenge mā te whakatau i a koe i te rā katoa. Whakaritehia ngā mahi uaua mō ngā wā e nui rawa ana tō kaha, kaua hoki e whakaroa ki te okioki ina hiahiatia. He tohu noa me te tika te ngenge o te CMT.

Noho hono ki ngā rōpū tautoko, ki ngā whakahaere ipurangi rānei mō te hunga CMT. Ko te whakawhitiwhiti wheako me ngā tohutohu ki ētahi atu e mōhio ana ki ō wero ka tino whai hua mō ngā tohutohu mahi me te tautoko hinengaro.

Me pēhea te whakarite mō tō hui ki te taote?

Ko te whakarite mō tō hui ki te taote ka āwhina i a koe ki te whiwhi i te hua nui rawa atu i tō haerenga me te whiwhi i te tiaki pai rawa atu. Ko te whakarite me te whakaaro nui ki nga mea e hiahia ana koe ki te korero ka awhina i to ropu hauora ki te mohio pai ake ki o hiahia.

I mua i to hui, kohikohia ngā korero nui:

• Tuhia ngā tohu katoa o te mate, tae atu ki te wā i tīmata ai rātou me te āhua o te huringa o aua tohu
• Whakarārangihia ngā rongoā me ngā taapiri katoa e inu ana koe
• Kawe mai ngā hua whakamātautau o mua, me ngā rēkōti hauora
• Whakamahia he pūrongo whānau, ā, āta whakarārangitia ngā whānau tata e whai ana i ngā tohu rite
• Tuhia ngā pātai e hiahia ana koe ki te ui

Whakaarohia te pānga o ō tohu ki tō oranga o ia rā. Kia tino mōhio ki ngā mahi kua uaua, kua kore rānei e taea. Ka āwhina tēnei mōhiohio i tō tākuta ki te mārama ki te pānga whakahaere o tō mate, ā, ki te whakarite i ngā tohutohu rongoā e tika ana.

Whakaarohia te kawe mai i tētahi mema o te whānau, i tētahi hoa rānei ki tō whakatau. Ka taea e rātou te āwhina i a koe ki te maumahara ki ngā mōhiohio, ā, ki te tautoko i a koe i ngā kōrero mō tō mate. I ētahi wā, ka kite ngā mema o te whānau i ngā huringa kāo kore koe e mōhio.

Kaua e whakaroa ki te ui i ngā pātai i tō whakatau. Ko ētahi pātai nui pea: He aha te momo CMT kei ahau? E hohoro ana te haere? He aha ngā rongoā kei te wātea? He aha ngā mahi me whakakahore? He aha ngā tohu whakatūpato me titiro atu?

He aha te mea nui mō te mate Charcot-Marie-Tooth?

Ko te mea nui rawa atu hei mārama mō te CMT, ahakoa he mate haere tonu, he tino whakahaeretia hoki mā te huarahi me te tautoko tika. He tokomaha ngā tāngata e ora ana i te ora tino whānuitia, e whai ana i ngā mahi, i ngā whakaongaonga, me ngā hononga, pēnei i ētahi atu.

Ka taea e te taumata whakamātautau me te whakahaere tika te whakarereke nui ki ō hua roa. Ko te mahi tahi me te rōpū hauora e mārama ana ki te CMT, te noho mahi tinana i roto i ō kaha, me te whakamahi i ngā taputapu tautoko e tika ana ina hiahiatia, ka taea te āwhina i a koe ki te pupuri i te motuhake me te kounga o te ora.

Kia mahara ko te CMT e pā ana ki te tangata katoa i rerekē ai. Ka rerekē pea tō wheako ki te mate i ētahi atu, ahakoa i roto i tō whānau ake. Aro atu ki tō haerenga ake me te mea e pai ana ki a koe, kaua e whakataurite ki ētahi atu.

He kaha, he tautoko te hapori CMT, me ngā rauemi pai e wātea ana mā ngā whakahaere pēnei i te Charcot-Marie-Tooth Association. Kāo kore koe i te kotahi i roto i tēnei haerenga, ā, kei te haere tonu te rangahau e mahi ana ki ngā rongoā pai ake, ā, i te mutunga ka whakaorangia.

Pātai Auau e Pā ana ki te Mate Charcot-Marie-Tooth

Q1: Ka tupu pono mai rā ngā tamariki ki ahau i te CMT mēnā kei ahau?

Kāo kore. Ko te nuinga o ngā momo CMT he 50% te tūponotanga o te tuku ki ia tamaiti, engari ko te tikanga he 50% te tūponotanga e kore ai e whiwhi. Ka taea e te tohutohu ira te āwhina i a koe ki te mārama ki ngā tūponotanga motuhake e hāngai ana ki tō momo CMT me te hītori whānau. Ko ētahi ka whiriwhiri ki te whakamātautau ira i te wā hapu, ko ētahi atu ka tatari kia kite. He tino whakaaro takitahi te whakatau, kāo he whiringa tika, kāo he he.

Q2: Ka taea te whakaora i te CMT, ka kino tonu rānei?

I tēnei wā, kāo he rongoā mō te CMT, engari kei te mahi ngā kairangahau ki ētahi rongoā whai whakautu. Ahakoa he mate pūmau te CMT, he puhoi, he whakahaere ngā whakaheke. He tokomaha te kite i te whakaora tika me ngā whakarerekētanga oranga, ka taea e rātou te pupuri i te kounga ora pai mō ngā tau maha. Ko te matua ko te mahi tahi me tō rōpū hauora kia āhei ai te whakatūpato i ngā tohu me ngā raruraru.

Q3: He haumaru mōku te whakakori tinana me te CMT?

Ae, he pai rawa te whakapakari tinana mō te hunga e pangia ana e te CMT, engari he mea nui kia whiriwhiria ngā momo mahi tika. He pai ngā whakapakari tinana ngawari penei i te kauhoe, te hikareti, me te hikoi. Kia kaua e mahi i ngā mahi kaha te pānga, i ngā mahi rānei e nui ake ai te tūpono o te hinga. Ka taea e tō kaiwhakaora tinana te awhina i te whakatakoto i te kaupapa whakapakari tinana e ora ana, ā, e whai hua ana mō tō āhuatanga motuhake.

Q4: He rongoā kei te hiahiatia kia karohia e au me te CMT?

Ae, ka taea e ētahi rongoā te whakaiti i te kino o ngā tūpuna i roto i te hunga e pangia ana e te CMT. Kei roto i ēnei ētahi rongoā mate pukupuku, ētahi rongoā mate huaketo, me ētahi rongoā e whakamahia ana mō ngā raruraru o te au o te ngākau. Me kī atu tonu ki ō tākuta me ō kaihoko rongoā kei a koe te CMT i mua i te tīmatanga o tetahi rongoā hou, tae atu ki ngā rongoā kore-tuku me ngā taapiri.

Q5: Me pēhea te mohio mehemea kei te kino haere aku tohu, kei te hiahia rānei ahau ki te kite i taku tākuta?

Whakapa atu ki tō tākuta ki te kite koe i ngā huringa tere i tō kaha, i ngā wāhi hou o te ngoikore, i ngā pikinga ohorere o te mamae, i te tūpono rānei o te hinga. Whakapa atu hoki ki te raruraru koe ki ngā mahi i taea e koe i mua, ki te whānau rānei koe i ngā tohu hou penei i ngā raruraru manawa, i te ngenge nui rānei. He mea nui ngā tirotiro noa, engari kaua e tatari mō te whakarite whakatau ki te manukanuka koe mō ngā huringa i tō āhuatanga.