Kua kite kē koe he uaua ake te hikoi, te oma, te piki arawhata rānei o ētahi tamariki, taiohi rānei i ētahi atu? Kua rongo rānei koe i te ngoikore haere o ō rātou uaua? Tērā pea ko te take o tēnei ko te mate ka kōrerohia e tātou i tēnei rā, e kiia nei ko te `(Becker Muscular Dystrophy)`. Kaua e manukanuka, me whakamārama e tātou ngā mea katoa i roto i ngā kupu māmā noa iho.
He aha te `(Becker Muscular Dystrophy)`? Hei whakarāpopototanga...
Ko te `(Becker Muscular Dystrophy)`, e mōhiotia ana ko `(BMD)`, he mate ira onge. Ko te mea ka tupu, ka ngoikore haere ngā uaua o te tinana, ā, ka heke te mahi a ngā uaua. Hei whakamārama, he mate ira tēnei. Ko te nuinga o te wā ka pā tēnei mate ki ngā tama me ngā tāne. Ko te take o tēnei ko `(X-linked inheritance)`, arā, ka tukuna iho mai i te whaea (mēnā he kaikawe ia) ki te tamaiti tāne.
Ko te tikanga ka tīmata tēnei ngoikore o te uaua i ō waewae me ō hope, ā, i roto i te wā, ka horapa ki ō ringa o runga, arā, ki tō tinana o runga.
O ngā momo mate pūkahukahu uaua e mōhiotia ana i tēnei wā, ko te BMD pea te tuatoru o ngā momo tino kitea i waenga i ngā pakeke, whai muri i te mate pūkahukahu myotonic me te mate pūkahukahu facioscapulohumeral.
He aha te rerekētanga i waenganui i te `(Becker Muscular Dystrophy)` me te `(Duchenne Muscular Dystrophy)`?
Kua rongo pea koe i tētahi mate e kiia nei ko te `(Duchenne Muscular Dystrophy)`, ko te `(DMD)` rānei. Ko te `(BMD)` me te `(DMD)` e puta mai ana i ngā whakarerekētanga ira i roto i te ira kotahi, arā, ko te ira e tohu ana i tētahi pūmua e kiia nei ko te `(dystrophin). He mea tino nui tēnei pūmua e kiia nei ko te `(dystrophin)` mō te hauora o ō tātou uaua.
Engari koinei te rerekētanga:
- Kāore rawa he pūmua dystrophin i roto i te kiko uaua o te tangata whai DMD.
- He iti te dystrophin i roto i ngā uaua o te tangata whai BMD, engari kāore i te rawaka.
Nō reira, he iti ake te kino o te mate `(BMD)` i te `(DMD)`, ā, he puhoi ake te puta me te whanake o ngā tohu i te `(DMD)`. Heoi, he rite tonu ngā tohu mō ngā mea e rua.
Ko wai te hunga e tino pāngia ana e tēnei mate (Becker Muscular Dystrophy)?
E ai ki tā mātou i kōrero ai i mua ake nei, ko te BMD te mea nui ka pā ki ngā tāne. Heoi, ko ngā wāhine he kawe i te BMD (arā, ko te hunga e kawe ana i te ira e puta ai te mate engari kāore e whakaatu i ngā tohu) ka pāngia pea e ngā tohu i ētahi wā. Heoi, kāore i te tino kino, ā, he tino ngawari noa iho.
I te nuinga o te wā, ka tīmata ngā tohu i waenga i te 5 me te 15 tau te pakeke. Heoi, ka pā pea ngā tohu ki ētahi tāngata i muri mai.
He pēhea te noa o te `(Becker Muscular Dystrophy)`?
He āhuatanga onge te BMD.E 3 ki te 6 o roto i te 100,000 pēpi e whānau ana ka pāngia e tēnei mate. Ā, e ai ki tā mātou i kōrero ai, ko ngā tama te mea tino pāngia.
He aha ngā tohu o te `(Becker Muscular Dystrophy)`?
Ko ngā tohu o te BMD ka tīmata i waenga i te 5 me te 15 tau te pakeke, engari ka puta pea i muri mai. Ko te mea ka tupu ko te ngoikore haere o te uaua i roto i te wā. Nō reira, ko ngā tohu tino kitea ko:
- Te uaua ki te piki i ngā arawhata.
- Te uauatanga o te hikoi, me te uauatanga ka piki haere i roto i te wā.
- Te ngoikore o te kaha ki te whakakori tinana (te ngenge ahakoa he iti noa te whakapau kaha).
- Te mamae o te uaua me/te wiriwiri rānei o te uaua (pēnei i te kōpiripiri).
- Ngā hinganga auau.
- Te hikoi mā te matimati.
- Te ngenge tonu.
Whakaarohia, ki te kore tāu tamaiti e oma ana, e tākaro ana pērā i mua, ā, ka mea ia "Māmā, kua ngenge ahau" ahakoa kua hikoi mō tētahi wā poto, ki te tere ake rānei tana ngenge i ētahi atu tamariki i a ia e tākaro ana i te kura, he mea pai kia āwangawanga koe mōna.
Haunga tēnei, ka taea e te BMD te whakaputa i ētahi atu tohu:
- Cardiomyopathy : He mea tēnei hei tūpato.
- Te uaua ki te manawa.
- Ētahi rerekētanga o te ako (pēnei i te roa o te wā ki te mārama ki ētahi mea i ētahi atu).
- Te ngaronga o te taurite me te taunga o te tinana.
Ko ngā wāhine e kawe ana i te BMD, tera pea he cardiomyopathy, he ngoikore uaua tino māmā rānei te mate. E kiia ana tata ki te 22% o ngā kawe ka pāngia e ngā tohu, engari he rerekē rawa tēnei i ia tangata, i ia tangata.
He aha te take o te `(Becker Muscular Dystrophy)`?
He mate ira tuku iho te BMD. Ka puta mai i te whakarerekētanga ira e tohu ana i te pūmua e kiia nei ko te dystrophin. He mea nui te dystrophin hei pupuri i te kaha me te pumau o ngā pūtau uaua i roto i ō tātou tinana.
Nō reira, ina puta he panoni i roto i tēnei ira `(dystrophin)`, kāore te pūmua `(dystrophin)` e puta, ka tino heke rānei te nui e puta ana. Nā reira, i roto i te wā, ka ngoikore ngā uaua, ka tīmata te pakaru.
He aha te tukunga iho o te Becker Muscular Dystrophy? He mea tēnei me mārama koe!
Ka tukuna iho te `(BMD)` i roto i tētahi ara e kīia nei ko te `(X-linked recessive inheritance)`. Nā, kia mārama tātou ki tēnei.
- Ko te tikanga o te hononga-X ko te ira e kawenga ana mō te BMD kei runga i te ira X. E mōhio ana koe, e rua ā tātou ira ira, ko te X me te Y.
- Ko te tikanga o te ira whakamuri , kia puta ai tēnei mate, me whai momo ira tuku iho, whakarerekētanga rānei, ngā tārua e rua o te ira e tika ana (e rua ā tātou tārua o te nuinga o ngā ira katoa) e puta ai te mate.
Engari koinei te mea tino nui:
- Kotahi te ira X o ngā tāne (XY) . Nō reira, ki te mea he hapa kei roto i te ira e tika ana i runga i taua ira X kotahi, he nui noa iho hei whakaputa i te `(BMD)`.
- E rua ngā ira X (XX) o ngā wāhine . Nō reira, kia puta ai he mate whakaheke hononga-X, me he hapa ngā tārua e rua o te ira. Heoi, ko ngā wāhine kei a rātou te ira hapa i runga i te ira X kotahi anake ka kiia he "kaikawe". I te nuinga o te wā, kāore ēnei kaikawe e whakaatu i ngā tohu. Heoi, he tino onge, ka puta pea ngā tohu ngawari, ngā tohu taurite rānei.
Inaianei tirohia te hekenga iho o tēnei i roto i ngā whakatipuranga:
- Mō te whaea he kaikawe (he ira hapa kei runga i te ira X kotahi) :
- Ki te whānau he tama, e 50% te tūponotanga ka pāngia taua tama e te mate `(BMD)`.
- Mena he tamāhine tāu, e 50% te tūponotanga ka riro ia hei kaikawe mate.
- Mō te matua tāne me te mate (BMD) :
- Kāore e taea e ia te tuku i tēnei mate ki āna tama (nā te mea ka tukuna e te pāpā te ira Y ki te tama).
- Engari ka noho katoa āna tamāhine hei kawe i te ira (nā te mea ka hoatu e te pāpā te ira X hapa ki te tamāhine).
Kei te mārama koe? He ahua uaua pea tēnei, engari ki te kī māmā, ko te mea pea ka pāngia te tamaiti e tōna whaea, mena he kaikawe te whaea.
Me pēhea te tātaritanga o te `(Becker Muscular Dystrophy)`?
Mena kei te whakapaehia koe, tāu tamaiti rānei kei te pāngia e te BMD, tera pea ka whakahaerehia e tō tākuta he whakamātautau tinana, he whakamātautau io, me te whakamātautau uaua. Ka pātai atu hoki rātou ki a koe mō ō tohu me tō hītori hauora, tae atu ki te mea kua pāngia tētahi o tō whānau e ngā āhuatanga rite.
I roto i ēnei whakamātautau, ka kitea pea e te tākuta ngā mea penei:
- Kua ngoikore ngā uaua o ngā waewae me ngā hope.
- Ahakoa te āhua nui o ngā uaua o te hope i te tirohanga tuatahi (e kiia ana tēnei ko te "pseudohypertrophy" ), kua ngoikore kē. Me te mea nei he pupuhi noa iho i roto, i waho.
- He piko o te tuaiwi (scoliosis) me ētahi āhua rerekē o te uma.
- Ngā āhuatanga rerekē o te uaua, hei tauira, te whakakikitanga tuturu o ngā uaua, ngā uaua, me te kiri i roto i ngā rekereke me ngā waewae (ngā hononga uaua) .
He aha ngā whakamātautau e whakamahia ana hei tautuhi i te `(Becker Muscular Dystrophy)`?
Mena kei te whakapae tō tākuta kei a koe, kei tō tamaiti rānei te BMD, ka tūtohu pea rātou i ngā whakamātautau e whai ake nei:
- Whakamātautau toto mō te creatine kinase: Ina pakaru ngā uaua, ka tukuna he whākōkī e kīia nei ko te creatine kinase ki roto i te toto. Tērā pea e rima ngā wā teitei ake, neke atu rānei, o te taumata o tēnei creatine kinase i te mea noa, mō te tangata whai BMD.
- Whakamātautau toto ira: Mā tēnei whakamātautau ira, e tirotiro ana mō te whakarerekētanga ira i roto i te ira Dystrophin, ka taea te tautuhi i te BMD.
Mena kua whakaūtia kei a koe, kei tāu tamaiti rānei te BMD, ka tūtohu pea tō tākuta i tētahi Electrocardiogram (EKG) me te Echocardiogram hei tirotiro i ngā raruraru uaua o te ngākau ka puta pea i te BMD.
Me pēhea te rongoā i te Becker Muscular Dystrophy?
Engari, kāore anō kia kitea he rongoā mō te BMD i tēnei wā. Nō reira, ko te whāinga matua o te maimoatanga he whakahaere i ngā tohu me te pupuri i te kounga pai rawa atu o te oranga.
E rua ngā maimoatanga matua mō te BMD:
1. Ngā corticosteroids: Hei tauira, ngā rongoā pēnei i te prednisolone. Ka āwhina ēnei ki te whakapai ake i te mahi a ngā pukahukahu, te whakaroa i te whanaketanga o te scoliosis, te whakaroa i te whanaketanga o te cardiomyopathy, me te whakaroa i te roanga o te oranga.
2. Whakaoraora: Ka āwhina ēnei i te tūroro ki te pupuri i tōna kaha ki te mahi mō te wā roa, me te whakapai ake i te kounga o tōna oranga.
- Ka āwhina te whakaora tinana ki te whakapakari i ngā uaua.
- Ka taea e te whakaora kōrero, te whakaora mahi, me te whakaora whakangahau te āwhina i ngā mahi o ia rā.
Haunga tēnei, kei reira ētahi atu maimoatanga hei āwhina i te BMD:
- Ngā āwhina nekenekehanga mō ngā mea pēnei i te hikoi - hei tauira, ngā tokotoko, ngā tūru wīra, ngā tautoko tinana.
- Ngā rongoā mō te `(Cardiomyopathy)` - hei tauira, `(ngā aukati ACE)` me `(ngā aukati beta)` .
- He pokanga hei āwhina i te scoliosis me ngā kirimana.
- Mena ka nui haere ngā uauatanga manawa (ka kore e taea te manawa) , tera pea e hiahiatia he pokanga tracheostomy (he pokanga hei whakatuwhera i te trachea) me te manawa horihori.
He waimarie, kei roto i ngā whakamātautau haumanu ētahi rongoā hou hei rongoā i te BMD, ā, ka taea e tātou te tumanako kia pai ngā hua mai i a rātou ā muri ake nei.
Ka taea te ārai i te Becker Muscular Dystrophy?
I te mea he mate tuku iho te BMD, kāore he mea e taea e tātou te mahi hei ārai i tēnei.
Heoi, ki te mea kei a koe te BMD, ki te mea rānei kei te āwangawanga koe kei a koe te BMD, tētahi atu mate ira rānei, kōrero ki tō tākuta i mua i te whānau tamariki.He tino pai te rapu tohutohu mō ngā ira.
He aha te āhua o te mate pukupuku uaua o Becker?
Ka rerekē pea te tirohanga a te tangata whai BMD i ia tangata, i ia tangata. He whanaketanga āta haere tēnei o te hauātanga. Heoi, he rerekē te kaha o te hauātanga. Tērā pea ka hiahiatia he tūru wīra mō ētahi tāngata, ko ētahi ia ka hiahiatia noa he āwhina hikoi (he tokotoko, he tokotoko tautoko).
Heoi, ki te mea he mate manawa, he uaua rānei ki te manawa te tangata whai "(BMD)", ka poto pea tōna roanga oranga.
Ko ngā raruraru pea ka puta mai i te BMD ko:
- Ngā raruraru o te ngākau, inā koa ko te '(Cardiomyopathy)'.
- Ngā uauatanga manawa e hua mai ana i te ngoikore o ngā uaua manawa.
- Te niumōnia, ētahi atu mate manawa rānei.
- Ka haere te wā, ka piki haere te hauātanga, ā, ka kore e taea e te tangata te mahi i āna mahi takitahi.
- Ngā whati wheua.
He aha te roanga o te oranga o te tangata e pāngia ana e te `(Becker Muscular Dystrophy)`?
Ko te roanga o te oranga o te tangata whai "BMD" ka poto ake. Arā, i waenganui i te 40 me te 50 tau. Ko te "dilated cardiomyopathy" (he āhuatanga e ngoikore ai, e whakanuia ai te uaua o te ngakau) te tino take o te mate.
Me pēhea taku tiaki i tētahi tangata he `(BMD)`? Me pēhea rānei taku tiaki i ahau anō?
Mena kei a koe te BMD, he mea nui kia whiwhi koe i te tiaki hauora pai hei ārai, hei rongoā rānei i ngā raruraru o te BMD, pērā i te mate ngakau me ngā raruraru manawa. He mea āwhina hoki te whakauru atu ki tētahi rōpū tautoko hei whakapuaki i ō wheako me te tūtaki ki ētahi atu e mārama ana ki a koe.
Mena kei te tiaki koe i tētahi tangata e pāngia ana e te BMD, he mea nui kia whakarite kei te whiwhi rātou i te tiaki hauora pai rawa atu, ngā taputapu hikoi e hiahiatia ana e rātou, me ngā maimoatanga hei āwhina i a rātou ki te mahi takitahi. Ko koe te tangata tika hei kaitautoko mō rātou.
Āhea ahau me toro atu ki te tākuta mō te `(Becker Muscular Dystrophy)`?
Mena kua tāpaetia koe (tāu tamaiti rānei) ki te mate Becker Muscular Dystrophy, he mea tino nui kia kite koe i tō tīma hauora i ia wā, i ia wā, mō te maimoatanga me te aroturuki i ō tohumate.
E mōhio ana mātou he uaua te mārama me te whakatau i tētahi mate pēnei i te Becker Muscular Dystrophy. He uaua rawa atu. Mā tō rōpū hauora koe e whakarato he mahere whakahaere pakari e hāngai ana ki ō tohumate. He mea nui kia whakarite kei te whiwhi koe i te tautoko e hiahiatia ana e koe, ā, kei te tiaki hoki i tō hauora.
Hei whakarāpopototanga, ngā mea hei maumahara mā tātou (Karere hei tango ki te kāinga)
Āe, anei ētahi mea māmā hei maumahara mō te `(Becker Muscular Dystrophy)` `(BMD)` rānei i kōrerohia e tātou:
- He mate ira te ``(BMD)`` e tukuna iho ana i roto i ngā whakatipuranga. I roto i tēnei, ka ngoikore haere ngā uaua.
- TeneiKo ngā tāne te mea tino pāngia.
- Ko te take he hapa i roto i te ira e hanga ana i te pūmua "dystrophin".
- Ko te tikanga ka tīmata ngā tohu i te tamarikitanga (i waenganui i te 5 me te 15 tau te pakeke). Ko ngā tohu ko te uaua ki te hikoi, te ngenge, me te hinganga pinepine.
- Ko te cardiomyopathy (mate uaua o te ngākau) me te uaua o te manawa ngā raruraru nui o tēnei mate.
- Kāore anō kia kitea he rongoā mō tēnei mate i tēnei wā. Heoi anō, he maha ngā maimoatanga e wātea ana hei whakahaere i ngā tohu me te whakapai ake i te kounga o te oranga (hei tauira, ngā corticosteroids, te whakaora tinana).
- Mena kei roto i te whānau tēnei āhuatanga, he mea whakaaro nui kia rapu tohutohu ira i mua i te whānautanga o tētahi tamaiti.
- He mea tino nui anō hoki te rapu tohutohu me te maimoatanga hauora i ia wā, me te noho kaha hoki ki te hinengaro.
Kaua e wareware, kāore koe i te mokemoke. I a koe e pāngia ana e tēnei āhuatanga, rapua he āwhina mai i ngā tākuta, i te whānau, i ngā hoa, me ngā rōpū tautoko. He puna kaha nui tēnei mōu!
` Te ngoikore o te uaua o Becker, BMD, ngoikore o te uaua, ngā mate ira, te ngoikore o te uaua, te hononga-X, ngā whakarerekētanga ira, te hauora o te tamaiti, te mate ngakau, te whakaora tinana
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