Hlala Uzinikezele Ngolwazi, Ukusekela, Nokuzimela
I-dystrophy yama-muscular iyisifo sobuthakathaka obuthakathaka nokulahlekelwa okubuhlungu ngokuhamba kwesikhathi. Nakuba kungekho ukwelashwa, kunezindlela zokwelapha ukusiza ukuphatha lesi sifo-futhi yilapho ukukhathazeka kuqala khona.
Kungakhathaliseki ukuthi ungumzali noma othandekayo, ukunakekela umuntu onesifo somzimba we-muscular dystrophy kudinga ukuqina okukhulu ngokomzimba, kwengqondo nangokomzwelo. Kodwa njengoba uqala (noma uqhubeka) uhambo lwakho lokunakekelwa, wazi ukuthi awodwa.
Abanye basendleleni futhi, kanti abanye bazimisele ukuhamba nawe.
Lokho kusho, nansi izikhala ezintathu okufanele zicatshangelwe njengoba uhamba ngalolu phiko oluyingqayizivele.
I-Tidbit # 1: Thola Ulwazi
Ulwazi lwe-dystrophy ye-muscular kuzokunika ukulawula okuthile okubambe iqhaza ekunakekelweni kwakho okunengcupheni kanye nenselele. Uzokwazi ukubikezela nokuphendula kalula ngezinselele zomthandayo.
Ngalokho, nansi amaqiniso ambalwa ukuze uthole ingqondo yakho ihlaziye.
Kunezinhlobo Ezihlukahlukene Ze-Dystrophy YamaMisipha
E-dystrophy yama-muscular, i-one noma ngaphezulu izakhi zofuzo ezilawula ukusebenza okuvamile kwemisipha zishintshashintsha (ukulandelana kwe-DNA kuguqulwa). Njengoba izakhi zofuzo ezihlukahlukene zingashintshwa, kunezinhlobo ezahlukene zama-dystrophies emisipha.
Isibonelo, ku- Duchenne muscular dystrophy (uhlobo oluvame kakhulu), i-dystrophin gene iguqulwa. Ngeshwa, amanye ama-dystrophies emisipha, i-gene eqondile noma izakhi zofuzo ezithintekile azikaze zibonwe.
I-Dystrophy yama-Muscular Ifa
Ijethi eguquguqukayo eyenza i-muscular dystrophy idluliselwa kumzali oyedwa noma kokubili kumntwana. Iphethini ethize yefa (ukuthi isakhi segciwane sidluliselwa kanjani kumntwana) sincike endaweni yegesi. Isibonelo, isakhi esithintekayo esenza i-Duchenne muscular dystrophy itholakala kwenye ye-chromosomes e-X ethathwa ngumama.
Leli phethini lefa libizwa ngokuthi i-X ehlanganisiwe ngokweqile.
I-Dystrophy yama-Muscular ibangela ukuhluleka kwe-Muscle
Uphawu oluyinhloko lwe-dystophy yemisipha lubuthakathaka bemisipha. Ezinye izinhlobo zama-dystrophies ezinama-muscular zenza ezinye izimpawu nazo, njengezinkinga zenhliziyo noma ubunzima bokuzicabangela.
Ubukhulu bezimpawu ziyahlukahluka, okusho ukuthi abanye abantu bakhula ukukhubazeka okukhulu, okudinga isitulo sabakhubazekile nokusekela umoya wokuphila, kanti abanye banokukhubazeka okuncane kuphela.
Okokugcina, ukuqala kobuthakathaka bemisipha (noma ukuqala komzimba we-muscular dystrophy) kuyahluka-ezinye ziqala ekuzalweni kanti ezinye ziqala ebuntwaneni, ekukhuleni, noma ngisho nasekukhuleni.
I-Tidbit # 2: Thola Ukusekelwa
Uma unakekela ingane noma umuntu omdala ene-muscular dystrophy, qiniseka ukuthi uyazama ukuthola usizo.
Umndeni nabangani
Wonke umuntu udinga ikhefu, kungakhathaliseki ukuthi ungumzali ozinakekela ingane ene-muscular dystrophy noma othandekayo enakekela umuntu omdala. Eqinisweni, umndeni, abangane, ngisho namavolontiya emphakathini wakho, ngokuvamile bafuna ukusiza kepha abazi ukuthi bangakwenza kanjani.
Yiba oqondile, uhlele isimiso, futhi ungazizwa unecala. Wonke umuntu udinga isikhathi sokuphumula nokuzikhulisa.
Usizo olungaphandle
Cabanga ukuthola umsizi womuntu ongaphandle (noma ohlala ngaphakathi) ongasiza ngokugeza, ukuya endlini yokugezela, ukungena nokulala, ukugqoka nokupheka.
Ungase ucabange futhi ukuqasha umhlengikazi (noma ngisho nokuhlela izisebenzi zokuzithandela ezithandayo) ebusuku ukuze ubukele ingane yakho noma othandekayo, ngakho ungathola ukulala okungaphazanyiswa.
Izikhathi eziningi, abantu bathola ukuthi usizo olungaphandle lukhuthaza ukuzimela zombili zombili-ingane yakho noma othandekayo cishe uyakwazisa lolu shintsho.
Ithimba Lezokwelapha
Ngokuya ngohlobo lwe-dystrophy ye-muscular ingane yakho noma abathandayo, kuyoba nesidingo sokuqashwa kwezokunakekelwa kwezempilo, ngokuvamile okuxubile.
Isibonelo, ingane yakho noma othandekayo ingahle ibe nokuqashwa okwakhiwe njalo okwelashwa ngokomzimba , kungaba emtholampilo noma ekhaya lakho.
Amanye ama-aphoyintimenti wokuqashwa kwezempilo angabandakanya:
- Ukuvakasha odokotela (isibonelo, udokotela wezingane, ochwepheshe be-neuromuscular, ohlinzayo wamazinyo , nesazi se-cardiologist)
- Ukuhlolwa okuhlukahlukene (isibonelo, ukuhlolwa komsebenzi wamaphaphu, ukuhlolwa kwe-bone mineral test, kanye nemibala engu-x yomgogodla ukuhlola ukusilahla)
- Ukuthola amagciwane (isibonelo, ukugujwa komkhuhlane waminyaka yonke kanye nemigomo ye-pneumococcal)
- Ukudla okunomsoco kanye nomeluleki wezakhi zofuzo
- Umsebenzi wezenhlalakahle uvakashele ukuvula amadivaysi okusiza afana nezihlalo zabakhubazekile, ama-ventilator, kanye neziphakamiso
Ngesikhathi sokuqokwa, vula ukuxoxa ngokukhathazeka nokubuza imibuzo. Ukufinyelela eqenjini lezokwelapha lomuntu othandekayo ukuze uthole usizo nokuqondiswa kulindeleke. Ekugcineni, ukukhulumisana okuvulekile phakathi kwazo zonke izinhlangothi kuzokwandisa ukunakekelwa kanye nekhwalithi yokuphila.
I-Muscular Dystrophy Association
I-Muscular Dystrophy Association (MDA) inhlangano ephawulekayo enikeza izinsiza eziningi zokunakekelwa, kuhlanganise nama-intanethi kanye namaqembu ezingxoxo, izinhlelo zokusekela kanye nohlu lokufunda oluphakanyisiwe.
Ngaphandle kwemithombo yokunakekelwa, banikeza izinhlelo ezifana nekamu le-MDA ehlobo lonke, lapho izingane ezine-muscular dystrophy zijabulela isonto elijabulisayo. Leli thuba lamahhala (exhasiwe ngabasekeli be-MDA) libuye linikeze abazali (kanye nabanye abanakekeli) ikhefu elifanelekile.
I-Tidbit # 3: Zinakekela Wena ngokwakho
Ukuzinakekela kubaluleke kakhulu njengomnakekeli. Okokuqala, kubalulekile ukunakekela umzimba wakho. Lokhu kusho ukuqiniseka ukuthi uthola umzimba, udla okunomsoco, futhi ubona udokotela wakho ukuhlola njalo.
Uma unenkinga yokuthola isikhathi sokuzivocavoca noma ukhathele ekupheleni kosuku, zama ukufaka umsebenzi wokuzivocavoca ekuphileni kwakho kwansuku zonke. Isibonelo, ungazama ukusebenza kwe-tv ekhaya noma uhambe ngezinyawo zansuku zonke izinsuku zemvelo noma ithrekhi yendawo yangaphakathi nomngane wakho othandekayo, uma kungenzeka.
Ngaphezu kokuya empilweni yakho engokwenyama, qiniseka ukuthi unakekela impilo yakho engokomzwelo. Ukucindezeleka kuvamile phakathi kwabanakekeli, ngakho qaphela izimpawu zokucindezeleka njengengqondo eqhubekayo, izinkinga zokulala, ukulahlekelwa noma ukuthola inzuzo yokudla, noma imizwa yokuphelelwa ithemba nokuzizwa unecala. Uma ukhathazekile ngokucindezeleka, bheka udokotela wakho noma uchwepheshe wezempilo yengqondo.
Ukulwa nokucindezeleka kanye nesidingo sokuba ngumnakekeli, kanye nokuhlanganyela ohlangothini oluvuzayo, cabanga ngokujoyina iqembu lokusekela labanakekeli. Ungase ucabange nokubandakanya emithangweni yomzimba engqondweni engakhuthaza ukuphumula nokukhululeka kokucindezeleka, njengokuzindla kwe-yoga noma ukucabanga.
Izwi elivela
Ukunakekela othandekayo nge-muscular dystrophy akulula, kodwa abaningi bathola ukuqoqa isiliva, kungakhathaliseki lokho ukuthola umbono ojulile, impilo enhle, ngokomoya ngokwengeziwe, noma nje ukuthola ubuhle ezinjabulweni ezincane zokuphila kwansuku zonke.
Hlala uqinisile futhi uzinikele ekuhambeni kwakho kokunakekelwa, khumbula ukuthuthukisa izidingo zakho siqu, futhi usebenzise abanye usizo.
> Imithombo:
> Darras BT. (2017). Izici zomtholampilo nokuxilongwa kwe-Duchenne ne-Becker i-dystrophy yemisipha. I-Patterson MC, u-Firth HV, ama-eds. Kusesikhathini. Waltham, MA: UpToDate Inc.
> Landfeldt E et al. Ukuqhathanisa umthwalo wokunakekelwa kokunakekelwa kwe-Duchenne muscular dystophy. J Neurol . Ngomhla ka-2016; 263 (5): 906-15.
> I-Muscular Dystrophy Association. (nd). Abanakekeli.
> I-National Institute of Neurological Disorder and Stroke. (2018). Ikhasi Lolwazi lwe-Muscular Dystrophy.