Kua tīmata ohorere koe ki te rongo i te ngoikore, i te ngau rānei i ō waewae? He maha ngā wā ka ngaro tō taurite, ka hinga koe i a koe e hikoi ana? Tērā pea ka kite koe i ētahi huringa o te āhua o ō waewae. Kaua e whakakorea ēnei mea hei ngenge noa. Nā te mea he tohu pea ēnei o tētahi mate io motuhake, ira e kiia nei ko Charcot-Marie-Tooth (CMT). Ahakoa he ahua uaua te ingoa, kāore he mea e wehi ai. I tēnei rā, me kōrero tātou mō tēnei mate, ōna tohu, me ngā mea ka taea te mahi mōna i roto i tētahi huarahi tino māmā me te hoa.
He aha te mate Charcot-Marie-Tooth (CMT)?
Ki te whakarapopoto, he mate te CMT e pā ana ki ngā io i waho o tō tātou roro me te taurakira . Ka kiia ēnei io he io ā-taha. Ka haria e ēnei io ngā karere mai i tō tātou roro ki ō tātou peka, ā, ka whakahokia mai ngā kare ā-roto (te wera, te makariri, te mamae) mai i ō tātou peka ki te roro. I roto i te CMT, ka pakaru ēnei io.
I ahu mai tēnei ingoa tauhou i ngā ingoa o ngā tākuta tokotoru i kite tuatahi i te mate i te tau 1886 (ko Jean-Martin Charcot, ko Pierre Marie, me Howard Henry Tooth). E kiia ana hoki ko `(hereditary motor and sensory neuropathy)` me `(peroneal muscular atrophy)`. Ehara tēnei i te mate kotahi, engari he rōpū mate e puta mai ana i ngā āhuatanga ira. Tae noa ki tēnei wā, neke atu i te 90 ngā momo CMT kua tautuhia.
Ko te mea nui, ehara tēnei i te mate hopuhopu. Arā, kāore e taea te horapa mai i te tangata ki te tangata mā te tihe, mā te pā atu rānei.
He aha ngā take o te mate CMT?
Nā te whakarerekētanga ira o roto i ō tātou ira te take o tēnei mate. He mea tēnei e tukuna iho ana mai i te mātua ki te tamaiti. Whakaarohia tō tātou pūnaha io he whatunga waea. Ko te roro te pokapū matua. Mai i reira, ka tukuna ngā karere ki ngā uaua o ō tātou ringa me ō tātou waewae kia "toto" me te "toto." Ko te mea e tupu ana i roto i te CMT ko te kore e mahi tika ēnei waea waea, ngā io rānei.
Ka ārai tēnei hapa ira i ngā io ki te tuku karere me te tika me te tere. I roto i te wā, ka ngoikore haere ēnei io, ka pakaru, ā, ka ngaro atu pea. Koinei te wā e puta ai ngā tohu pēnei i te ngoikore o te uaua me te ngaronga o te rongo.
He aha ngā tohu noa o tēnei mate?
Ko ngā tohu o te CMT ka tīmata te puta i te mutunga o te tamarikitanga, i te taiohitanga rānei . Ka kitea tuatahitia ēnei tohu i ngā waewae me ngā waewae.
| Tohu | He whakamārama māmā |
|---|---|
| Te huringa o te āhua o te waewae | He teitei rawa te piko o te waewae. Waihoki, he piko ngā māikuku o waenganui, he rite ki te hama te āhua. Ka kiia tēnei he "māikuku hama". Nā tēnei ka uaua te hikoi, ā, ka puta he mate, he pupuhi, he kiri mārō ina mau hu. |
| Te uaua ki te hikoi | Ka uaua te hiki i te waewae i te whenua i a koe e hikoi ana. Ka kiia tēnei ko te "taka o te waewae". Mā tēnei ka tōia te waewae ki runga i te whenua, ka hiahia rānei koe ki te hikoi me te "papaki". |
| ngoikore o te uaua | Ka roa te wā, ka angiangi, ka ngoikore hoki ngā uaua, inā koa i ngā waewae o raro. |
| Ngaronga o te kare ā-roto me ngā raruraru taurite | Tērā pea ka pā te wiri, te māuiui rānei i ngā waewae me ngā ringa. Ka uaua te pupuri i te taurite o te tinana. |
I te whanaketanga o te mate, ka pāngia hoki ngā uaua o ngā ringaringa me ngā ringaringa e ēnei tohu. Heoi, ko te hunga whai mate nei ka roa te ora, ka ora tonu .
Me pēhea te tātaritanga tika a te tākuta i tēnei mate?
Mena kei a koe, kei tāu tamaiti rānei ēnei tohu, ko te mea pai ko te toro atu ki tētahi tākuta . Tērā pea ka tukuna koe e tō tākuta ki tētahi tākuta roro, he tākuta tohunga ki te pūnaha io.
He maha ngā whakamātautau ka mahia e rātou hei tautuhi i te mate, pērā i:
- Hītori hauora whānau : Pātai atu mēnā kua pāngia tētahi o tō whānau e ēnei tohu.
- Whakamātautau tinana:Ka whakahaerehia e rātou ngā whakamātautau pēnei i te knee-zerk reflex, arā, ko te patuki i te turi ki te hama iti. He tino ngoikore ēnei reflex i roto i te hunga whai CMT. Ka whakamātauhia hoki e rātou te ngoikore o te uaua mā te tono i a rātou kia hikoi i runga i ō rātou kapu waewae.
- Whakamātautau Tere Arataki Io: Ko te whakauru i ngā irahiko iti ki te kiri me te tuku i tētahi iahiko iti rawa hei ine i te tere o te arataki karere a ngā io. He puhoi tēnei tere i roto i ngā tūroro CMT.
- Te Irahiko-ā-roto (EMG): Ka werohia he ngira tino angiangi ki roto i te uaua, ā, ka inehia te ngohe hiko o te uaua i a koe e mahi ana i tētahi mahi, pērā i te kōpiri i tō ringa.
- Whakamātautau DNA: Ka tangohia he tauira toto hei tirotiro mō ngā hapa ira e puta ai te CMT. Heoi, ko te korenga o tētahi hapa i roto i tēnei whakamātautau ehara i te mea kāore he CMT, nā te mea kāore anō kia tautuhia ngā ira katoa e puta ai te mate.
He aha ngā maimoatanga mō te CMT?
Engari, kāore anō kia kitea he rongoā mō te CMT . Heoi, he maha ngā maimoatanga hei āwhina i te whakahaere i ngā tohu me te noho ora pai.
Ko te mea nui ko te whakahaere i te mate. He maha ngā huarahi hei mahi i tēnei.
- Te Whakaora Tinana: He mea tino nui tēnei. Ka mahia ngā mahi whakapakari uaua me te totoro i raro i te arataki a te kaiwhakaora. He tino pai ngā mahi kāore e whakararu i ngā hononga, pērā i te kaukau me te eke pahikara. He mea tino nui kia tīmatahia tēnei maimoatanga i ngā wāhanga tōmua , i mua i te ngoikore o ngā uaua.
- Whakaora Mahi: Ka āwhina tēnei whakaora ina pāngia ngā ringaringa e te mate, ā, ka uaua ki te mahi i ngā mahi o ia rā (kai, kakahu). Kei roto ko te whakangungu i ngā pūkenga hei whakapakari i te pupuri me te whakangāwari i ngā mahi.
- Ngā Pūrere Āwhina: Mā ngā tautoko waewae me ngā hu hangai ka māmā ake te hikoi, ā, ka pai ake hoki te tautoko i te tinana.
- Rongoā: Kei te wātea ngā rongoā mamae me ētahi atu rongoā mō ngā mea pēnei i te mamae uaua me te mamae io. Me kōrero koe ki tō tākuta mō tēnei mea, ā, me whiriwhiri e koe te rongoā tika.
- Pokanga: I ētahi wā, ka tūtohutia pea te pokanga hei whakatika i ngā āhua kino me ngā raruraru hononga o ngā waewae. Heoi, kāore e taea e te pokanga te whakatika i te kino o te io.
Ka taea e tēnei mate te whakaputa i ētahi atu raruraru?
Ae, ka taea e te CMT te whakararu i ētahi atu raruraru hauora i ētahi wā.
- Te uaua ki te manawa me te horomi: He ahua onge tēnei. Engari ki te pāngia ngā uaua e whakahaere ana i te diaphragm, tera pea ka uaua ki te manawa i ngā wā katoa. Ki te puta tēnei, me toro atu ki te tākuta tonu. He āhuatanga ohorere pea tēnei.
- Ngā Mate Pukupuku: Nā te mea he iti ake te rongo o ngā waewae, i ētahi wā ka kore e kitea ngā karawarawa me ngā patunga iti. Ki te kore ēnei patunga e rongoatia tika, ka pangia pea. Nō reira, he mea tino nui kia tirohia tonutia ō waewae, kia ma tonu hoki .
- Te Mate Hip Dysplasia: Ki te kore e tika te tūnga o te hononga hope, ka kino ake te āhua i te CMT.
- Ngā mōrearea i te wā e hapu ana: He nui ake te mōrearea o ngā wāhine whai CMT ki te whakawhanake i ētahi raruraru i te wā e hapu ana.
Karere Tangohia ki te Kāinga
- He mate ira pūnaha io te Charcot-Marie-Tooth (CMT) i tukuna mai i ngā mātua. Kāore e pangia.
- Ko ngā tohu matua ko te ngoikore haere o ngā uaua, ko ngā waewae me ngā kapu waewae te nuinga, te uaua ki te hikoi, me te ngaro o te rongo.
- Ahakoa e kore e taea te whakaora katoa, mā te whakaora tinana, ngā taputapu āwhina, me te whakahaere tika, ka taea te ora i tētahi oranga tino pai, tino ki tonu.
- Ki te pā mai ēnei tohu ki a koe, kaua e wehi, kaua hoki e whakaroa, me toro atu ki te tākuta kia whiwhi ai koe i te tātaritanga tika.
- He mea tino nui te tiaki i ō waewae, te horoi i aua waewae i ngā wā katoa, me te tirotiro mēnā he whara.











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