Ku ci gaba da kasancewa ta hanyar ilimi, goyon baya, da kuma kula da kai
Muscular dystrophy ne cuta na tsoka raunana da asarar cewa worsens a tsawon lokaci. Yayin da babu magani, akwai hanyoyin maganin cutar don taimakawa wajen magance cutar-kuma wannan shi ne inda mai kulawa ya shiga wasa.
Ko kana da iyaye ko ƙaunataccen, kulawa da wani da dystrophy na muscular yana buƙatar ɗaukar jiki, tunani, da kuma motsin zuciyarka. Amma yayin da kuka fara tafiya (ko ci gaba) tafiya mai kula da ku, ku san cewa ba ku kadai ba.
Sauran suna kan wannan tafiya kuma, wasu suna son su tafi tare da ku.
Wannan ya ce, a nan akwai abubuwa uku da za a yi la'akari da yadda kake gudanar da wannan dandalin.
Tidbit # 1: Samun Ilimi
Sanin dystrophy na ƙwayar cuta zai ba ka iko a kan mawuyacin hali da kalubalancin kulawa. Za ku iya hango koyon hangen nesa da amsa sauƙi ga ƙalubalen da kuke ƙauna.
Da wannan, a nan wasu ƙananan hujjoji ne don yin tunanin zuciyarka.
Akwai Dabbobi daban-daban na ƙwayar ƙwayar ƙwayar ƙwayar cuta
A cikin dystrophy na muscular, daya ko fiye da kwayoyin da ke kula da aikin tsoka na al'ada suna canza (an canza DNA jerin). Tunda ana iya canza kwayoyin halitta daban daban, akwai nau'o'i daban-daban na dystrophies muscular.
Alal misali, a cikin Dystrophy na musamman na Duchenne (mafi yawan na yau da kullum), ana canza mutun dystrophin. Abin takaici, ga wasu ƙwayoyi masu jijiyoyin kwayar halitta, ainihin nau'i ko kwayoyin da aka shafi ba a gano su ba tukuna.
Muscular Dystrophy An Hade
Kwayar da ke haifar da dystrophy na muscular ya wuce daga ɗaya ko biyu iyaye zuwa yaro. Abinda ya dace da gado (yadda jigirin ya wuce ga yaro) ya dogara da wurin da gene. Alal misali, kwayar halittar da ke haifar da dystrophy na jijiyar Duchenne yana daya daga cikin X-chromosomes da mahaifiyar take.
Wannan nau'i na gado yana da alaƙa da X-linked repessive.
Muscular Dystrophy yana haifar da rauni
Babban abin da ke nunawa na dystophy na muscular shine lalacewar tsoka. Wasu nau'i na dystrophies na muscular suna haifar da wasu bayyanar cututtuka, kamar matsalolin zuciya ko matsaloli masu hankali.
Mawuyacin bayyanar cututtuka ya bambanta, ma'ana wasu mutane suna fama da rashin lafiya, suna buƙatar waƙaɗar ƙafa don motsa jiki da goyon bayan ventilatory don rayuwa, yayin da wasu suna da nakasa marasa lafiya kawai.
A ƙarshe, shekarun farkon farawa na tsoka (ko farawar kwayar dystrophy) ya bambanta-wasu farawa a haihuwar yayin da wasu suka fara tun yana yaro, samari, ko ma tsofaffi.
Tidbit # 2: Get Support
Idan kana kula da yaron ko babba da dystrophy na muscular, tabbas za ka iya neman taimako.
Iyali da abokai
Kowane mutum yana buƙatar hutu, ko kai ne iyaye na kula da yaro da dystrophy na muscular ko ƙaunatacciyar kulawa ga wani balagagge. A gaskiya ma, iyali, abokai, har ma masu ba da gudummawa a cikin al'ummanku, sau da yawa suna so su taimaka amma ba su sani ba.
Yi ƙayyadaddu, tsara tsarawa, kuma kada ka ji laifi. Kowane mutum na bukatar lokaci don shakatawa da kuma kula da kai.
Taimakon waje
Yi la'akari da samun takwaran mai kulawa na sirri (ko mai zama) wanda zai iya taimakawa tare da yin wanka, zuwa gidan wanka, shiga ciki da kuma daga cikin gado, kayan ado, da kuma dafa abinci.
Hakanan zaka iya la'akari da biyan ma'aikaci (ko ma tanadar masu aikin sa kai na shirye-shirye) da dare don kallon ɗanka ko ƙaunataccena, saboda haka zaka iya samun barci marar katsewa.
Sau da yawa, mutane suna ganin cewa taimako na waje yana inganta 'yancin kai ga bangarorin biyu - ɗayanku ko ƙaunataccen zai iya jin wannan canji.
Ƙungiyar lafiya
Dangane da irin ƙwayar murfin ƙwayar murya da yaro ko ɗayanku, akwai bukatar bukatun kiwon lafiya, sau da yawa yawancin.
Alal misali, yaro ko ƙaunatacciyarka yana iya samun izinin tarurruka ta jiki akai-akai, ko dai a asibitin ko cikin gidanka.
Sauran alƙawarin kiwon lafiyar na iya hada da:
- Doctor ziyarci (alal misali, dan jarida, likitan neuromuscular, likita kothopedic , kuma likitan zuciya)
- Samun gwaje-gwajen daban-daban (alal misali, gwajin gwaji, gwaje-gwajen gwaje-gwaje na kashin nama, da hasken rana na kashin baya don bincika scoliosis)
- Samun maganin alurar rigakafin (alal misali, annobar shekara da kuma maganin pneumococcal)
- Gudanar da abinci da kuma shawarwari na kodayake
- Jami'in zamantakewa ya ziyarci bude kayan aiki masu kwaskwarima irin su gadaje, kwalliya, da kuma ɗagawa
A lokacin alƙawari, kasancewa a bude don tattaunawa akan damuwa da yin tambayoyi. Ana tsammanin samun kusanci ga tawagar likitan ku don taimako da jagoranci. A ƙarshe, bude sadarwa tsakanin bangarori daban-daban zai inganta kulawa da ingancin rayuwa.
Muscular Dystrophy Association
Ƙungiyar Muscular Dystrophy (MDA) wata ƙungiya mai ban mamaki ce ta samar da dama albarkatun don masu kulawa, ciki har da abubuwan da ke cikin layi da kungiyoyin tattaunawa, shirye-shiryen tallafi, da jerin labaran da aka ba da shawarar.
Baya ga kayan kulawa, suna bayar da shirye-shirye kamar sansanin MDA na shekara-shekara, inda yara da dystrophy na muscular zasu iya ji dadin mako guda. Wannan damar kyauta (wanda magoya bayan MDA ke tallafawa) kuma yana ba iyaye (da sauran masu kula) tallafin da ya cancanta.
Tidbit # 3: Kula da Kai
Kulawa kai tsaye yana da muhimmanci a matsayin mai kulawa. Na farko, yana da muhimmanci a kula da jikinka. Wannan yana nufin tabbatar da kake samun motsa jiki, cin abinci mai gina jiki, da kuma ganin likitanka don dubawa na yau da kullum.
Idan kuna fuskantar wahalar samun lokaci don yin aiki ko kuma kawai ku ƙure a ƙarshen rana, kokarin gwada motsa jiki a rayuwarku na yau da kullum. Alal misali, zaku iya gwada wasan kwaikwayo na tv a gida ko tafiya don tafiya a cikin layi a cikin yanayi ko a cikin gida na gida tare da ƙaunataccenku, idan ya yiwu.
Baya ga halartar lafiyar lafiyarka, tabbatar da kula da lafiyar ka. Rashin hankali ya zama na kowa tsakanin masu kulawa, don haka kula da bayyanar cututtuka na ciki kamar matsanancin hali, matsalolin barci, hasara ko samun ci abinci, ko kuma rashin jin dadi da laifi. Idan kun damu da bakin ciki, ga likitan ku ko likitan lafiyar hankali.
Don magance matsalolin da ake bukata na kasancewa mai kulawa, kazalika da raba bangaren kyauta, la'akari da shiga ƙungiyar goyon baya ga masu kulawa. Kuna iya la'akari da shiga cikin kwakwalwar jiki na jiki wanda zai iya inganta shakatawa da kuma taimako na danniya, kamar yoga ko tunani mai mahimmanci.
Kalma Daga
Yin kula da ƙaunataccen da dystrophy na muscular ba abu mai sauƙi ba, amma mutane da yawa suna samun launi na azurfa, ko samun samun zurfi, mafi kyan gani a rayuwar, zama mai ruhaniya, ko kuma neman kyawawan abubuwa a cikin jin daɗin rayuwar yau da kullum.
Ci gaba da kasancewa mai karfin gwiwa da tafiya cikin kulawa, kula da kula da bukatun ku, da kuma kai ga wasu don taimakon hannu.
> Sources:
> Darras BT. (2017). Bayanai na asibiti da kuma ganewar asali na Duchenne da Becker ƙwayar murya. Patterson MC, Firth HV, eds. Na zamani. Waltham, MA: UpToDate Inc.
> Landfeldt E et al. Bayyana nauyin kulawa a cikin dystophy na Duchenne. J Neurol . 2016 May; 263 (5): 906-15.
> Kungiyar Muscular Dystrophy. (nd). Masu kulawa.
> Cibiyar Nazarin Cibiyoyin Kwayoyin Tsaro da Yankewa. (2018). Muscular Dystrophy Information Page.