Kodi minofu ya mwana wanu ikuoneka kuti ikufooka? Tiyeni tikambirane za (Becker Muscular Dystrophy)!

Kodi mwaonapo kuti ana ena kapena achinyamata amavutika kuyenda, kuthamanga, kapena kukwera masitepe kuposa ena? Kapena munamvapo kuti minofu yawo ikufooka pang'onopang'ono? Mwina chifukwa cha izi ndi vuto lomwe tikambirane lero, lotchedwa `(Becker Muscular Dystrophy)`. Musadandaule, tiyeni tifotokoze zonse mwachidule.

Kodi `(Becker Muscular Dystrophy)` ndi chiyani? Mwachidule...

`(Becker Muscular Dystrophy)`, yomwe imadziwikanso kuti `(BMD)` mwachidule, ndi matenda osowa kwambiri a majini. Chomwe chimachitika ndi chakuti minofu m'thupi imafooka pang'onopang'ono ndipo ntchito yawo imachepa. Kunena zoona, uwu ndi matenda a majini. Matendawa amakhudza kwambiri anyamata ndi amuna. Chifukwa chake ndi `(X-linked inheritance)`, zomwe zikutanthauza kuti amalandira kuchokera kwa mayi (ngati ali ndi kachilomboka) kupita kwa mwana wamwamuna.

Kufooka kwa minofu kumeneku nthawi zambiri kumayambira m'miyendo ndi m'chiuno mwanu, ndipo pakapita nthawi, kumatha kufalikira mpaka m'manja mwanu, kutanthauza thupi lanu lapamwamba.

Mwa mitundu yomwe ikudziwika panopa ya muscular dystrophy, BMD ikhoza kukhala mtundu wachitatu wofala kwambiri pakati pa akuluakulu, pambuyo pa myotonic dystrophy ndi facioscapulohumeral dystrophy.

Kodi kusiyana pakati pa `(Becker Muscular Dystrophy)` ndi `(Duchenne Muscular Dystrophy)` ndi kotani?

Mwina munamvapo za vuto lotchedwa `(Duchenne Muscular Dystrophy)` kapena `(DMD)`. `(BMD)` ndi `(DMD)` zonse zimayambitsidwa ndi kusintha kwa majini omwewo, ndiko kuti, jini yomwe imapanga puloteni yotchedwa `(dystrophin).` Puloteni iyi yotchedwa `(dystrophin)` ndi yofunika kwambiri pa thanzi la minofu yathu.

Koma kusiyana kwake ndi uku:

• Munthu amene ali ndi matenda a shuga (DMD) alibe pafupifupi puloteni ya dystrophin m'minofu yawo.
• Munthu amene ali ndi BMD ali ndi dystrophin m'minofu yake, koma sikokwanira.

Chifukwa chake, vuto la `(BMD)` silili lalikulu kwambiri poyerekeza ndi `(DMD)`, ndipo zizindikiro zimawonekera ndikupita patsogolo pang'onopang'ono kuposa `(DMD)`. Komabe, zizindikirozo zimakhala zofanana kwambiri kwa onse awiri.

Ndani amene amakhudzidwa kwambiri ndi vutoli (Becker Muscular Dystrophy)?

Monga tanenera kale, BMD imakhudza kwambiri amuna. Komabe, akazi omwe ali ndi BMD (monga omwe ali ndi jini yomwe imayambitsa matendawa koma osawonetsa zizindikiro) nthawi zina amatha kukhala ndi zizindikiro. Komabe, nthawi zambiri sizimakhala zoopsa kwambiri, ndipo zimakhala zochepa kwambiri.

Kawirikawiri, zizindikiro zimayamba pakati pa zaka 5 ndi 15. Komabe, anthu ena amatha kuona zizindikiro pambuyo pake.

Kodi Becker Muscular Dystrophy ndi yofala bwanji?

Matenda a BMD ndi matenda osowa kwambiri.Matendawa amakhudza ana pakati pa atatu ndi asanu ndi mmodzi mwa ana 100,000 aliwonse obadwa. Ndipo monga tanenera, amakhudza kwambiri anyamata.

Kodi zizindikiro za `(Becker Muscular Dystrophy)` ndi ziti?

Zizindikiro za BMD nthawi zambiri zimayamba pakati pa zaka 5 ndi 15, koma zimatha kuchitika pambuyo pake. Chomwe chimachitika ndichakuti kufooka kwa minofu kumawonjezeka pang'onopang'ono pakapita nthawi. Chifukwa chake, zizindikiro zodziwika kwambiri ndi izi:

• Kuvuta kukwera masitepe.
• Kuvuta kuyenda, ndipo mavuto akuwonjezeka pakapita nthawi.
• Kuchepa kwa luso lochita masewera olimbitsa thupi (kumva kutopa ngakhale mutachita masewera olimbitsa thupi pang'ono).
• Kupweteka kwa minofu ndi/kapena kugwedezeka kwa minofu (monga kupweteka kwa minofu).
• Kugwa pafupipafupi.
• Kuyenda ndi zala.
• Kumva kutopa nthawi zonse (Kutopa).

Tangoganizirani, ngati mwana wanu sakuthamanga ndi kusewera monga kale, ndipo akunena kuti "Amayi, ndatopa" ngakhale atayenda kwakanthawi, kapena ngati watopa mofulumira kuposa ana ena akamasewera kusukulu, ndi bwino kuda nkhawa pang'ono ndi izi.

Kuwonjezera pa izi, BMD ingayambitse zizindikiro zina:

• Matenda a mtima : Ichi ndi chinthu choyenera kusamala nacho.
• Kuvuta kupuma.
• Kusiyana kwina pakuphunzira (monga kutenga nthawi yayitali kuti mumvetse zinthu zina kuposa zina).
• Kutaya mgwirizano wa thupi ndi kugwirizana.

Azimayi omwe ali ndi BMD akhoza kukhala ndi matenda a mtima kapena kufooka pang'ono kwa minofu. Akuti pafupifupi 22% ya omwe ali ndi matendawa amakhala ndi zizindikiro, koma izi zimasiyana kwambiri malinga ndi munthu aliyense.

Kodi n’chiyani chimayambitsa `(Becker Muscular Dystrophy)`?

Matenda a BMD ndi matenda a majini omwe amabadwa nawo. Amayambitsidwa ndi kusintha kwa majini komwe kumapanga puloteni yotchedwa dystrophin. Dystrophin ndi yofunika kwambiri kuti maselo a minofu m'thupi lathu akhale olimba komanso okhazikika.

Choncho, pakachitika kusintha kwa jini ya `(dystrophin)` iyi, puloteni ya `(dystrophin)` siipangidwa, kapena kuchuluka kwa mapuloteni omwe amapangidwa kumachepa kwambiri. Zotsatira zake, pakapita nthawi, minofu imakhala yofooka ndikuyamba kuwonongeka.

Kodi Becker Muscular Dystrophy inabadwa bwanji? Ichi ndi chinthu chomwe muyenera kumvetsetsa pang'ono!

`(BMD)` imalandira cholowa m'njira yotchedwa `(X-linked recessive inheritance)`. Tsopano tiyeni timvetse izi mosavuta.

• X-linked imatanthauza kuti jini yomwe imayambitsa BMD ili pa chromosome ya X. Monga mukudziwa, tili ndi ma chromosome awiri ogonana, X ndi Y.
• Kubwezeretsa kumatanthauza kuti kuti matendawa achitike, makope onse awiri a jini yoyenera (tili ndi makope awiri a pafupifupi jini iliyonse) ayenera kukhala ndi mtundu wina wa matenda kapena kusintha komwe kumayambitsa matendawa.

Koma apa pali chinthu chofunika kwambiri:

• Amuna (XY) ali ndi chromosome imodzi ya X. Choncho, ngati pali cholakwika mu jini yoyenera pa chromosome imodzi ya X, ndizokwanira kuyambitsa `(BMD)`.
• Azimayi ali ndi ma chromosome awiri a X (XX) . Choncho kuti matenda obwera chifukwa cha X achitike, nthawi zambiri makope onse awiri a jini ayenera kukhala ndi vuto. Komabe, akazi omwe ali ndi jini lolakwika pa chromosome imodzi ya X amatchedwa "onyamula." Nthawi zambiri, onyamula awa sasonyeza zizindikiro. Komabe, nthawi zambiri, zizindikiro zochepa kapena zochepa zimatha kuchitika.

Tsopano onani momwe izi zimachitikira m'mibadwomibadwo:

• Kwa mayi amene ali ndi kachilomboka (ali ndi jini yolakwika pa chromosome imodzi ya X) :
• Ngati mwana wamwamuna wabadwa, pali mwayi wa 50% kuti mwanayo adzakhala ndi vuto la `(BMD)`.
• Ngati muli ndi mwana wamkazi, pali mwayi wa 50% kuti adzakhala ndi kachilomboka.
• Kwa bambo amene ali ndi vuto la (BMD) :
• Sangathe kupatsira ana ake aamuna matendawa (chifukwa bambo amapereka chromosome ya Y kwa mwana wawo).
• Koma ana ake onse aakazi adzakhala ndi kachilomboka (chifukwa bamboyo ndiye amapatsa mwana wake chromosome ya X yolakwika).

Kodi mukumvetsa? Izi zingawoneke ngati zovuta pang'ono, koma mwachidule, mnyamata nthawi zambiri amatha kutenga matendawa kuchokera kwa amayi ake, ngati mayi ake ndi amene ali ndi matendawa.

Kodi `(Becker Muscular Dystrophy)` imapezedwa bwanji?

Ngati inu kapena mwana wanu mukukayikira kuti muli ndi BMD, dokotala wanu mwina adzachita mayeso a thupi, mayeso a mitsempha, ndi mayeso a minofu. Adzakufunsaninso za zizindikiro zanu ndi mbiri yanu yachipatala, kuphatikizapo ngati pali aliyense m'banja mwanu amene wakhala ndi matenda ofanana ndi anu.

Pa nthawi ya mayeso awa, dokotala angaone zinthu monga:

• Minofu ya miyendo ndi chiuno yafooka.
• Ngakhale kuti minofu ya m'mimba ingawoneke yayikulu poyamba (izi zimatchedwa ``pseudohypertrophy'' ), kwenikweni imakhala yofooka. Zili ngati kuti yadzimbidwa kuchokera mkati kupita kunja.
• Kupindika kwa msana (scoliosis) ndi zilema zina za pachifuwa.
• Kusakhazikika kwa minofu, mwachitsanzo, kulimba kosatha kwa minofu, minyewa, ndi khungu m'zidendene ndi miyendo (ma contractures) .

Ndi mayeso ati omwe amagwiritsidwa ntchito pozindikira `(Becker Muscular Dystrophy)`?

Ngati dokotala wanu akuganiza kuti inu kapena mwana wanu ali ndi BMD, angakulangizeni mayeso otsatirawa:

• Kuyezetsa magazi a Creatine kinase: Minofu ikawonongeka, imatulutsa enzyme yotchedwa creatine kinase m'magazi. Munthu amene ali ndi BMD akhoza kukhala ndi creatine kinase iyi nthawi zisanu kapena kuposerapo kuposa momwe zimakhalira masiku onse.
• Kuyezetsa magazi m'majini: Kuyezetsa kwa majini kumeneku, komwe kumafufuza kusintha kwa majini a Dystrophin, kumatha kuzindikira BMD.

Ngati inu kapena mwana wanu mwatsimikiziridwa kuti muli ndi BMD, dokotala wanu angakulangizeninso kuti muone ngati muli ndi vuto la mtima chifukwa cha BMD pogwiritsa ntchito Electrocardiogram (EKG) kapena Echocardiogram .

Kodi Becker Muscular Dystrophy imachiritsidwa bwanji?

Mwatsoka, pakadali pano palibe mankhwala a BMD. Chifukwa chake, cholinga chachikulu cha chithandizo ndikuwongolera zizindikiro ndikusunga moyo wabwino kwambiri.

Pali njira ziwiri zazikulu zochizira BMD:

1. Corticosteroids: Mwachitsanzo, mankhwala monga prednisolone. Izi zimathandiza kukonza magwiridwe antchito a mapapo, kuchepetsa kukula kwa scoliosis, kuchepetsa kukula kwa matenda a mtima, komanso kukulitsa nthawi ya moyo.

2. Kubwezeretsa: Izi zimathandiza wodwalayo kukhalabe ndi luso logwira ntchito kwa nthawi yayitali ndikukweza moyo wake.

• Kuchiza thupi kumathandiza kulimbitsa minofu.
• Chithandizo cha kulankhula, chithandizo cha ntchito, ndi chithandizo cha zosangalatsa zingathandize pa zochita za tsiku ndi tsiku.

Kuwonjezera pa izi, palinso mankhwala ena omwe angathandize ndi BMD:

• Zinthu monga kuyenda, mipando ya olumala, ndi zothandizira kuyenda zimathandizira kuyenda bwino.
• Mankhwala a `(Cardiomyopathy)` - mwachitsanzo `(ACE inhibitors)` ndi `(beta-blockers)` .
• Opaleshoni yothandizira scoliosis ndi contractures.
• Ngati vuto la kupuma lakula kwambiri (kulephera kupuma) , tracheostomy (njira yopaleshoni yotsegula trachea) ndi kupuma kochita kupanga zingakhale zofunikira.

Nkhani yabwino ndi yakuti mankhwala angapo atsopano ochizira `(BMD)` akuyesedwa kuchipatala ndipo akhoza kukhala abwino mtsogolo. (Cholakwika chomasulira chikuyenera kukhala Chisinhala: Nkhani yabwino ndi yakuti mankhwala angapo atsopano ochizira `(BMD)` akuyesedwa kuchipatala. Akhoza kukhala abwino mtsogolo.)

Mwamwayi, mankhwala angapo atsopano omwe angachiritse BMD pakadali pano akuyesedwa kuchipatala, ndipo tingayembekezere zotsatira zabwino kuchokera kwa iwo mtsogolo.

Kodi Becker Muscular Dystrophy ingapewedwe?

Popeza BMD ndi matenda obadwa nawo, palibe chomwe tingachite kuti tipewe matendawa.

Komabe, ngati muli ndi BMD, kapena ngati mukuda nkhawa kuti mwina muli ndi BMD kapena matenda ena a majini, lankhulani ndi dokotala wanu za vutoli musanayambe kukhala ndi ana.Ndi bwino kwambiri kufunafuna uphungu wa majini.

Kodi Becker Muscular Dystrophy ndi chiyani?

Malingaliro a munthu amene ali ndi BMD amatha kusiyana malinga ndi munthu. Uku ndi kupita patsogolo pang'onopang'ono kwa chilema. Komabe, kuopsa kwa chilema kumasiyana. Anthu ena angafunike mpando wa olumala, pomwe ena angafunike kugwiritsa ntchito zida zoyendera (ndodo, ndodo).

Komabe, ngati munthu amene ali ndi ``(BMD)`` ali ndi matenda a mtima kapena kupuma movutikira, nthawi yawo ya moyo ingachepe.

Mavuto omwe angabwere chifukwa cha BMD ndi awa:

• Mavuto a mtima, makamaka `(Cardiomyopathy)`.
• Kuvuta kupuma chifukwa cha kufooka kwa minofu yopumira.
• Chibayo kapena matenda ena opumira.
• Pakapita nthawi, chilema chimawonjezeka ndipo munthuyo amalephera kuchita ntchito yake payekha.
• Kusweka kwa mafupa.

Kodi munthu amene ali ndi matenda a `(Becker Muscular Dystrophy)` amakhala ndi moyo wautali bwanji?

Nthawi ya moyo wa munthu amene ali ndi "BMD" nthawi zambiri imafupikitsidwa pang'ono. Izi zikutanthauza kuti, pakati pa zaka 40 ndi 50. "Dilated cardiomyopathy" (vuto lomwe minofu ya mtima imafooka ndikukulitsidwa) ndiye chifukwa chachikulu cha imfa.

Kodi ndingasamalire bwanji munthu amene ali ndi `(BMD)`? Kapena ndingasamalire bwanji ndekha?

Ngati muli ndi BMD, ndikofunikira kupeza chithandizo chabwino chamankhwala kuti mupewe kapena kuchiza mavuto a BMD, monga matenda a mtima ndi mavuto opuma. Zingakhalenso zothandiza kulowa nawo gulu lothandizira komwe mungagawane zomwe mwakumana nazo ndikukumana ndi ena omwe amakumvetsani.

Ngati mukusamalira munthu yemwe ali ndi BMD, ndikofunikira kuonetsetsa kuti akulandira chithandizo chabwino kwambiri chamankhwala, zida zothandizira kuyenda zomwe akufunikira, komanso njira zochiritsira zomwe zimawathandiza kuti azigwira ntchito paokha. Inuyo ndiye muyenera kukhala womuthandiza.

Kodi ndiyenera kupita liti kwa dokotala za `(Becker Muscular Dystrophy)`?

Ngati inu (kapena mwana wanu) mwapezeka ndi matenda a Becker Muscular Dystrophy, ndikofunikira kwambiri kupita ku gulu lanu lachipatala nthawi zonse kuti mukalandire chithandizo komanso kuyang'anira zizindikiro zanu.

Tikudziwa kuti matenda monga Becker Muscular Dystrophy ndi ovuta kuwamvetsa ndi kuwathetsa. Zingakhale zovuta kwambiri. Gulu lanu lachipatala lidzakupatsani dongosolo lolimba loyang'anira matenda lomwe likugwirizana ndi zizindikiro zanu. Ndikofunikira kuonetsetsa kuti mukulandira chithandizo chomwe mukufuna ndikusamalira thanzi lanu.

Mwachidule, zinthu zomwe tiyenera kukumbukira (Uthenga Wopita Nawo Kunyumba)

Chabwino, nazi zinthu zosavuta kukumbukira zokhudza `(Becker Muscular Dystrophy)` kapena `(BMD)` zomwe tidakambirana:

• ``(BMD)`` ndi matenda a majini omwe amafalikira m'mibadwo yambiri. Pachifukwa ichi, minofu imafooka pang'onopang'ono.
• IziZimakhudza kwambiri amuna.
• Choyambitsa ndi vuto mu jini lomwe limapanga puloteni ya ``dystrophin''.
• Zizindikiro nthawi zambiri zimayamba ali ana (pakati pa zaka 5 ndi 15). Zizindikiro zimaphatikizapo kuvutika kuyenda, kutopa, komanso kugwa pafupipafupi.
• Matenda a mtima (cardiomyopathy) ndi kuvutika kupuma kungakhale mavuto akuluakulu a vutoli.
• Pakadali pano palibe mankhwala a vutoli. Komabe, pali njira zosiyanasiyana zochiritsira zizindikiro ndikukweza moyo (monga corticosteroids, physiotherapy).
• Ngati wina m'banjamo ali ndi vutoli, ndi bwino kufunafuna uphungu wa majini musanayambe kukhala ndi mwana.
• Ndikofunikanso kwambiri kufunafuna upangiri ndi chithandizo chamankhwala nthawi zonse, komanso kukhala olimba m'maganizo.

Musaiwale kuti simuli nokha. Mukakumana ndi izi, funani thandizo kwa madokotala, abale, anzanu, ndi magulu othandizira. Zidzakhala gwero lalikulu la mphamvu kwa inu!

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` Becker muscular dystrophy, BMD, kufooka kwa minofu, matenda a majini, dystrophin, X-linked, majini mutations, thanzi la ana, matenda a mtima, chithandizo cha thupi