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He aha te OPMD (Oculopharyngeal Muscular Dystrophy)? Kia mārama tātou.
Ki te kī ngāwari, he mate ira tino onge te Oculopharyngeal Muscular Dystrophy (OPMD) . Ko te mea ka tupu i roto i tēnei ko te ngoikore haere o ētahi o ngā uaua o roto i tō tātou tinana. Whakaarohia, ahakoa ko te huringa ira e puta ai tēnei mate he mea i whānau mai ai tātou, ko te nuinga o te wā ka tīmata te puta o ngā tohu i te pakeketanga waenga, arā, i te 40, i te 50 rānei o te tau. Ko tēnei OPMD nō te rōpū mate e ngoikore ai ngā uaua e kiia nei ko te Muscular Dystrophy . He mate ēnei e tukuna iho ana i ia whakatipuranga ki ia whakatipuranga, arā, e tukuna ana mā roto i ngā ira. Ko te OPMD e kiia ana ko te "Oculopharyngeal", ā, ko te nuinga ka pā ki a tātou:- Ngā uaua o te kanohi - arā, ngā uaua e karapoti ana i ngā kanohi.
- Pharyngeal - E pā ana tēnei ki ngā uaua o te korokoro e āwhina ana i a tātou ki te horomi kai me te kōrero.
He pēhea te noa o te OPMD? Ko wai te hunga tino tūpono ka pāngia e tēnei mate?
Ina hoki, kāore he tatauranga tika mō te tokomaha o ngā tāngata o te ao e pāngia ana e te OPMD. Heoi, e ai ki ngā tohunga, kei waenganui i te 3,000 me te 30,000 tāngata i te United States anake ka pāngia e tēnei mate. Ko te tikanga he mate onge tēnei. Ahakoa ka taea te whakawhanake i te OPMD i roto i te tangata, he nui ake te kitea i roto i ētahi rōpū tāngata. Hei tauira:- I roto i te taupori Hūrai o Bukharan i Iharaira (tata ki te kotahi i roto i te 700 tāngata).
- I roto i te taupori Wīwī-Kānata i te porowini o Quebec, Kanata (tata ki te kotahi i roto i te 1,000 tāngata).
He aha ngā tohu o te OPMD? Me pēhea te tautuhi i tōna mate?
E ai ki tā tātou i kōrero ai i mua, ko te OPMD te mea nui ka pā ki ō kanohi me tō korokoro. Nō reira, ko te ngoikore o ngā uaua o ō kamo me tō korokoro ka puta ai ngā tohu penei:- Ngā kamo e takoto kau ana ( Ptosis ) : He taumaha te āhua o ngā kamo, ā, kāore e taea te whakatuwhera tika. I ētahi wā, ka āraia te tirohanga.
- KaiTe Uaua ki te Horomi ( Dyphagia ): He ahua kei te korokoro te puku, he uaua rānei ki te horomi i te wā e horomi ana te kai, te inu rānei. Koinei te tohu matua, ā, he ahua whakararuraru hoki e kitea ana i roto i te OPMD.
- Dysphonia : Ngā huringa o te reo, te pāorooro, te uaua rānei ki te kōrero mārama.
- Te tirohanga takirua (Diplopia) : Tērā pea ka kitea he mea kotahi, he mea e rua.
- Ngoikoretanga o ngā uaua o te mata : Tērā pea ka ngoikore ngā uaua e whakahaere ana i ngā kare ā-roto o te mata .
- Te ngoikore o te tirohanga me ngā herenga o te nekehanga o ngā kanohi : Tērā pea he uaua ki te tahuri i ō kanohi me te titiro ake.
- Te ngoikore, te memeha rānei o ngā uaua o te arero : Ka arahi pea tēnei ki ngā āhuatanga pēnei i te kore e taea te whakamahi tika i te arero me te uaua ki te neke kai i roto i te waha.
- Rohe hope
- Ngā pakihiwi
- Huha o runga
He aha mēnā ka puta wawe mai ngā tohu i te wā i whakaarohia?
He tino onge te whanaketanga o te OPMD kino ki ētahi tāngata. Koinei te wā ka tīmata te ngoikore o te uaua i mua i te 45 tau te pakeke. I roto i ēnei āhuatanga, he mea noa ka kore e taea e te tangata te hikoi ko rātou anake i te 60 tau te pakeke. Hei tāpiri, ka pāngia pea rātou e:- Te pouri
- Ngā tinihanga (ngā mea āhua kāore i te tūturu)
- Te hekenga o te hinengaro
- Ngā raruraru io (Neuropathy)
He aha ngā take o te OPMD?
He mate ira te OPMD. Ko te tikanga tēnei ka puta mai i te whakarerekētanga ira i roto i ō tātou ira i te whānautanga. Ko te whakarerekētanga ira e puta ai te OPMD ka puta i roto i te ira PABPN1 . Ko tēnei PABPN1Ka taea e tātou te whiwhi i te whakarerekētanga ira mai i tō tātou whaea, i tō tātou pāpā, i ngā mea e rua rānei. I te nuinga o te wā, ko tētahi o ngā mātua o te tangata he OPMD tōna. Whakaarohia, ko te nuinga o ō tātou ira he takirua. Nō reira, e rua ngā tārua o tēnei ira PABPN1 kei roto i tō tātou DNA. Hei whakawhanake i te OPMD, he nui noa iho te whai i taua whakarerekētanga ira i roto i te kotahi tārua o tēnei ira PABPN1 . Heoi, ka taea e ētahi tāngata te whai i tēnei whakarerekētanga ira i roto i ngā tārua e rua o te ira PABPN1 . I roto i ēnei tāngata, ko ngā tohu OPMD ka paku kino ake, ā, ka puta wawe mai.Me pēhea koe e tino mōhio ai mēnā kei a koe te OPMD? (Tauātanga)
Mena kei a koe ngā tohumate o te OPMD, ka tātaritatia koe e tō tākuta i runga i ō tohumate. Kātahi ka whakamātauria he whakamātautau toto hei whakaū i te tātaritanga. Mā tēnei ka rapua he whakarerekētanga ira i roto i te ira PABPN1 . Hei tāpiri, ka mahia pea e tō tākuta ēnei whakamātautau e whai ake nei:- Ngā Electromyograms (EMG) : Ka tirohia e tēnei whakamātautau te urupare a ō uaua ki ngā tohu io. Kei roto i tēnei ko ngā rangahau kawe io me ngā whakamātautau ngira hiko.
- Te tango i ngā pūtau uaua : Ko te tango i tētahi tauira iti o te kiko uaua ka whakamātautau. Ka taea e tēnei tango i ngā pūtau uaua te āwhina ki te kimi i te whakarerekētanga ira PABPN1 mēnā kāore i te mārama ngā whakamātautau toto .
- Ngā whakamātautau horomi : Mena he uaua ki a koe te horomi ( dysphagia ), ka rapua e ēnei whakamātautau ngā raruraru ki ngā uaua o tō korokoro hei kimi i te pūtake.
He aha ngā maimoatanga mō te OPMD?
Ka rerekē te maimoatanga mō te OPMD i runga i ō tohu me tōna kaha. Kaua e manukanuka, he maha ngā maimoatanga hei āwhina i te whakahaere i ō tohu.- Te whakaora tinana, te whakaora mahi rānei : Mā te mahi tahi me te kaiwhakaora hinengaro ka āwhina i a koe ki te whakapakari i tō kaha me te mahi i ngā mahi o ia rā. Mena he uaua ki a koe te hikoi nā te ngoikore o te uaua, ka tūtohu pea tō kaiwhakaora hinengaro i te whakamahinga o ngā taputapu pēnei i te tokotoko , ngā tautoko waewae , ngā taputapu hikoi rānei.
- Whakaora kōrero : Ka taea e te tohunga mate kōrero me te reo te āwhina i a koe ki ngā raruraru horomi me te kōrero i puta mai i te OPMD. Ka taea te whakaiti i ngā uauatanga o te horomi mā te kai me te waha iti, te whakarerekē i te āhua o tō pupuri i tō mahunga, te whakarerekē rānei i ō tikanga kai.
- Werohanga paitini botulinum : Ka werohangahia e te tākuta te paitini botulinum ki roto i te uaua kei te tihi o tō korokoro.Ka taea e koe te werohanga. Mā tēnei ka whakangāwari i te uaua mō te wā poto, kia māmā ake ai te horomi. Engari kia mau tonu ai ēnei hua, me werohanga koe i ia torutoru marama.
- Te whakatikatika i te Blepharoptosis: Mena ka āraihia tō tirohanga e te kamo e takoto ana ( ptosis ), ka tūtohu pea te tākuta i te pokanga kirihou. Ko te whakatikatika i te Blepharoptosis he tikanga e hiki ake ai ō kamo kia pai ake ai tō tirohanga.
- Te miotomi Cricopharyngeal : He tikanga pokanga tēnei. Ka tapahia e te taote pokanga he wahi iti i roto i tō korokoro, inā koa i roto i te uaua cricopharyngeal, kei runga ake i te esophagus . Ka āwhina tēnei i te whakangāwari i ngā uaua o tō korokoro, kia māmā ake ai te uru o te kai ki roto i tō esophagus.
- Whāngai ngongo (kai enteral) : Mena he uaua rawa tō horomitanga ( dysphagia ), he pai pea te whakamahi i te ngongo whāngai hei rongoā. Ka whakauruhia e te tākuta tēnei ngongo mā roto i tō ihu, i tō puku rānei, ka tukuna tika ngā matūkai ki roto i ō whekau, i tō puku rānei. Mā tēnei ka taea e koe te whiwhi i te matūkai e hiahiatia ana e koe, me te karo katoa i tō korokoro.
Ko te mea nui ko te kōrero ki te tākuta kia whiriwhiria e ia te maimoatanga e pai ana mōu. Kāore e rite te āhua o te katoa.
He maimoatanga hou kei roto i ngā whakamātautau haumanu mō te OPMD?
Āe, tera pea ka āhei koe ki te whiwhi maimoatanga whakamātautau haumanu mō te OPMD. Ka taea e koe te pātai ki tō tākuta mō ēnei. Kei te whakamahi hoki ngā tākuta i ētahi atu kano ārai mate hei āwhina i te whakamamae i ngā tohumate OPMD. Heoi anō, kei te rangahau tonu ngā kairangahau i ngā pānga roa o ēnei maimoatanga.He ara hei ārai i te whanaketanga o te OPMD?
Engari, he mate ira te OPMD, nō reira kāore he huarahi hei aukati i tōna whanaketanga. Heoi, ki te mea he OPMD tētahi o ō mātua, me whakaaro pea koe ki te whakamātautau ira . Ka tirohia e tēnei whakamātautau te rerekētanga ira e puta ai te OPMD. Ma te kaitohutohu ira koe e whakamārama ngā hua o tō whakamātautau, ā, ma ia anō hoki koe e whakaako mō te tūponotanga o te tuku i te OPMD, i ētahi atu mate tuku iho rānei ki ō tamariki.He aha te āhua o te heke mai mō te tangata whai OPMD?
Ka pā kino pea te OPMD ki tō kounga o te oranga. Heoi, kāore e pā ki tō roanga o te oranga. Ka taea e te maimoatanga te āwhina i te whakahaere i ngā tohu me te whakaiti i te tūponotanga o ngā raruraru. Nō reira kaua e manukanuka.He aha ngā raruraru ka pā mai i te OPMD?
Ko te raruraru matua o te OPMD e pā ana ki te uaua ki te horomi. Ka ngoikore ngā uaua o tō arero me tō korokoro, ka uaua ai te kai. Ka piki ake te tūponotanga o:- Te niumōnia manawa (te niumōnia i puta mai i te kai, i te wai rānei e uru ana ki te ara manawa )
- Te kōroke
- Te kore kai
He aha ngā pātai me pātai atu e au ki taku tākuta?
Mena kei a koe te OPMD, kei te whakaaro rānei koe kei a koe, he mea pai kia pātai atu koe ki tō tākuta i ēnei pātai:- He aha ngā tohu tōmua o te OPMD?
- Me pēhea te tautuhi tika i te OPMD?
- He aha ngā kōwhiringa maimoatanga mō te OPMD?
- He aha ngā raruraru ka pā mai i te OPMD?
- He aha ngā tūponotanga ka pāngia aku tamariki e te OPMD mai i ahau?
Ka taea e te OPMD te mate?
Kāore te OPMD e pā tika ki tō roanga o te ora. Heoi, ki te kore e rongoatia, ka taea e te ngoikore o te uaua korokoro te whakanui ake i te tūponotanga o ngā mate morearea pērā i te kōroke , te niumōnia manawa rānei. Nō reira, he mea nui kia rapu wawe i te maimoatanga mēnā ka puta ngā tohu.Ka taea e te OPMD te whakararu i te ngenge?
Ae, ka taea e te OPMD te whakararuraru. Ehara te ngenge i te tohu matua o te OPMD, engari he mea noa i waenga i te hunga whai mate nei. I kitea i roto i tētahi rangahau tata ki te haurua o te hunga whai OPMD ka pāngia e te ngenge ka whakararuraru i ā rātou mahi o ia rā.He aha atu ngā āhuatanga he rite ngā tohu ki te OPMD?
Tērā ētahi āhuatanga hauora e rite ana ō rātou tohu ki te OPMD. Nō reira, he mea nui kia tika te tautuhi i te mate. Ko ētahi tauira ko:- Blepharophimosis, ptosis, epicanthus inversus syndrome (BPES) : He mate tuku iho anō hoki tēnei. Ko ngā tohu ko te whaiti me te heke o ngā kamo.
- Te mate ophthalmoplegia o waho e haere whakamua ana (te mate Kearns-Sayre) : He mate uaua-io onge tēnei e pā ana ki ngā kanohi me te ngākau.
- Myasthenia gravis : He mate pūnaha ārai mate tēnei e ngoikore ai te uaua me te ngenge.
- Te myopathy o te oro o te taringa : Ka taea e tēnei mate te whakaputa i te maha o ngā tohu o te OPMD, tae atu ki te uaua o te manawa me te ngaronga pea o te rongo.
Ngā mea hei maumahara mā tātou i kōrero ai (Karere hei kawe ki te kāinga)
Āe, kua mōhio koe inaianei ko te OPMD (Oculopharyngeal Muscular Dystrophy) he mate ira onge e ngoikore ai ngā uaua o ngā kamo me te korokoro. He maha ngā wā ka puta ngā tohu i muri i te 40 tau te pakeke. Nō reira, ki te pāngia koe e ētahi tohu, pērā i te kamo e takoto kau ana, te uaua rānei ki te horomi, rapua he tohutohu hauora i runga i te wā tonu . Ka taea e tō tākuta te mahi i ngā whakamātautau e tika ana hei tātaritanga i te OPMD me te whakarato maimoatanga hei āwhina i te whakahaere i ō tohu.Kia maumahara, ka kino haere ngā tohumate OPMD i te roanga o te wā. Ā, kāore e pā ki tō roanga o te ora. Mā te maimoatanga tika, ka taea e koe te pupuri i te kounga pai o te oranga. Koia te mea nui kia kaha tonu koe.te ngoikore o te uaua o te kanohi, te OPMD, te mate pūkahukahu, te koretake o te kai, te ngoikore o te uaua, te mate ira, te ira PABPN1, te uaua ki te horomi, te kamo e takoto kau ana
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