Hlala Uzinikele Ngolwazi, Inkxaso, kunye Nokuzinakekela
I-muscular dysstrophy isifo sobuthathaka kunye nokulahleka okugqithiseleyo ngokuhamba kwesikhathi. Nangona kungekho nonyango, kukho iindlela zokuncedisa ukulawula eso sifo-kwaye yilapho ukunyamekela kubonakala khona.
Ingaba ungumzali okanye umthandayo, ukunyamekela umntu onesifo somzimba esiswini kukudinga amandla omzimba, engqondweni, nangokomzwelo. Kodwa njengoko uqala (okanye uqhubeke) uhambo lwakho lokunyamekela, wazi ukuba awodwa.
Abanye bale ndlela nabo, kwaye abanye bazimisele ukuhamba nawe.
Oku kuthethi, zilapha ezintathu zintlanzi zokuqwalasela njengoko uhamba ngelo xesha elikhethekileyo.
Tidbit # 1: Fumana Ulwazi
Ulwazi lwe-dysstrophy ye-muscular luya kunika ulawulo phezu kwendima yakho yokukhathalela. Uyakwazi ukuqikelela nokuphendula ngokulula ngakumbi kwimingeni yakho.
Ngaloo nto, nantsi iimbalwa ezimbalwa ezisisiseko ukuze ufumane ingqondo yakho.
Kukho iintlobo ezahlukeneyo zeMiscular Dystrophy
Kwi-muscular dystrophy, enye okanye izakhi zofuzo ezilawula umsebenzi oqhelekileyo wemisipha ziguqulwa (i-DNA ngokulandelelana ishintshiwe). Ekubeni iindidi ezahlukahlukeneyo zingatshintshwa, kukho iintlobo ezahlukeneyo ze-dystrophies ze-muscular.
Ngokomzekelo, kwiDuchenne muscular dystrophy (uhlobo oluqhelekileyo), i-dystrophin gene iguqulwa. Ngelishwa, ezinye i-dystrophies ze-muscular, i-gene echanekileyo okanye i-gene echaphazelekayo ayifumananga.
I-Muscular Dystrophy Ifa
Umzimba oguqulwayo obangela i-muscular dystrophy idluliselwa kumntwana omnye okanye bobabili abazali kumntwana. Iprojekthi ethile yelifa (indlela i-gene idluliselwa ngayo kumntwana) kuxhomekeke kwindawo yokugcina imfuza. Umzekelo, i-genetic mutation eyenza i-Duchenne muscular dystrophy itholakala kwenye ye-X i-chromosomes ethathwa ngumama.
Le pateni yelifa libizwa ngokuba yi-X edibeneyo.
I-muscular Dystrophy ibangele ubuhlungu beMiscle
Uphawu oluphambili lwe-dystophy ye-muscular bubuthakathaka bomzimba. Ezinye iintlobo ze-dystrophies ze-muscular zibangela nezinye iimpawu, njengeengxaki zeentliziyo okanye ubunzima beengcamango.
Ubunzima beempawu ziyahlukahluka, oku kuthetha ukuba abanye abantu bakhula ukukhubazeka okukhulu, befuna isitulo sabakhubazekile ukuba bahambe kunye nenkxaso yokuphucula umoya, kanti abanye banokukhubazeka.
Ekugqibeleni, ubunzima bokuqala buthathaka (okanye ukuqala kwe-muscular dystrophy) kuyahluka-abanye baqala ukuzalwa xa abanye beqala ebuntwaneni, beselula, okanye bakhulile.
Tidbit # 2: Fumana inkxaso
Ukuba unakekela umntwana okanye umntu omdala ene-muscular dysstrophy, qi ni sekise ukuba ufumane inkxaso.
Usapho kunye nabahlobo
Wonke umntu udinga ukuphuka, nokuba ungumzali onakekela umntwana onesifo somzimba we-muscular dystrophy okanye othandekayo unakekela umntu omdala. Enyanisweni, iintsapho, abahlobo, kunye namavolontiya ngaphakathi kwindawo yakho, bahlala befuna ukunceda kodwa abazi ukuba njani.
Yiba yinto ecacileyo, cwangcisa ishedyuli, kwaye ungaziva unetyala. Wonke umntu ufuna ixesha lokuphumla nokuzondla.
Ngaphandle U kunceda
Cinga ukufumana ngaphandle (okanye uhlala-ngaphakathi) oncedisayo unonophelo onokuncedisa ngokuhlamba, ukuya kwindlu yokuhlambela, ekungeneni nasekuphumeni ebhedeni, egqoke kunye nokupheka.
Unokucinga kwakhona ngokuqesha umongikazi (okanye ukuhlela amavolontiya azinikeleyo ngobusuku) ukujonga umntwana wakho okanye umthandayo, ngoko unokufumana ukulala okungaphazamiseki.
Amaxesha aphindaphindiweyo, abantu bafumanisa ukuba ngaphandle koncedo kukhuthaza ukuzimela kubomabini omabini-umntwana wakho okanye othandekayo uya kuluqonda olu tshintsho.
Iqela lezoNyango
Ngokuxhomekeke kuhlobo lwe-dysstrophy yakho ye-muscular okanye umntwana wakho othandekayo, kuya kubakho isidingo sokutyunjwa kwezempilo, kaninzi kukho ezininzi.
Ngokomzekelo, umntwana wakho okanye othandekayo unokuba nokuqokwa kwamachiza okwenziwa rhoqo, mhlawumbi kwikliniki okanye ekhaya lakho.
Olunye utyando lwezempilo olunokuthi luquka:
- Ukutyelela ugqirha (umzekelo, udokotela wezilwanyana, ochwepheshe be-neuromuscular, ogqirha wamazinyo , kunye ne-cardiologist)
- Ukufumana iimvavanyo ezahlukahlukeneyo (umzekelo, ukuvavanywa komsebenzi wamaphaphu, ukuhlolwa kweethambo zamaminerali, kunye nemizuzu eyi-x yomgudu ukujonga i-scoliosis)
- Ukufumana ukugonywa (umzekelo, ukutshulwa komkhuhlane wonyaka kunye neentsholongwane ze-pneumococcal)
- Ukutya kunye nomcebisi wezofuzo
- Utyelelo loonontlalontle ukutyelela ukuvula izixhobo zokuncedisa ezifana nezihlalo zabakhubazekile, iziphulo zomoya kunye neziphakamiso
Ngexesha lokutyunjwa, vula ukuba uxoxisane ngezinto ezixhalabisayo kwaye ubuze imibuzo. Ukufikelela kwiqela lonyango lomthandayo ukuxhaswa kunye nokukhokelwa kulindeleke. Ekugqibeleni, ukukhulumisana okuvulelekileyo phakathi kwamaqela onke kuya kukwandisa ukunakekelwa kunye nomgangatho wobomi.
Umbutho we-Muscular Dystrophy
Umbutho we-Muscular Dystrophy (MDA) yinhlangano ephawulekayo enika ubuninzi bezinto eziphathekayo kubantu abanonophelo, kubandakanywa amanqaku e-intanethi kunye namaqela eengxoxo, iinkqubo zenkxaso kunye nohlu lokufunda olucebisiweyo.
Ukongeza kwizinto zokuzinakekela, banikela iinkqubo ezifana nenkampu yehlobo lwe-MDA ehlobo, apho abantwana abane-muscular dystrophy banokuzonwabisa ngeveki yokuzonwabisa. Leli thuba elikhululekile (kuxhaswa ngabaxhasayo be-MDA) linikeza abazali (kunye nabanye abanakekeli) ukuphuka okufanelekileyo.
Tidbit # 3: Ukunyamekela
Ukuzinakekela kubaluleke kakhulu njengomncedisi. Okokuqala, kubalulekile ukunyamekela umzimba wakho. Oku kuthetha ukuqinisekisa ukuba usebenzise umzimba, udla ukutya okunomsoco, kwaye ukhangele ugqirha wakho ngokuhlola rhoqo.
Ukuba unobunzima bokufumana ixesha lokusebenzisa okanye ukuphelelwa kade ekupheleni kosuku, zama ukubandakanya umziselo kwimpilo yakho yemihla ngemihla. Ngokomzekelo, unokuzama ukusebenzisa i-tv-based home okanye uhambe ngokuhamba imihla ngemihla kwindalo okanye kwindawo yangaphakathi yangaphakathi kunye nomthandayo, ukuba kunokwenzeka.
Ukongeza kokuya kwimpilo yakho yempilo, qiniseka ukuba uyayinyamekela impilo yakho. Ukuxinezeleka kuqhelekileyo phakathi kwabanonophelo, ngoko jonga iimpawu zokudakumba njengengqondo ephosakeleyo, iingxaki zokulala, ukulahleka okanye ukufumana ukutya, okanye ukuziva ungathembeki kunye netyala. Ukuba unenkxalabo malunga nokudakumba, jonga ugqirha okanye ingcali yezempilo yengqondo.
Ukulwa noxinzelelo kunye nemfuno yokuba ngumnakekeli, kunye nokwabelana ngecala elivuzayo, cinga ukujoyina iqela lokuxhasa abanonophelo. Unokucinga kwakhona ngokubandakanyeka kwiingqondo zomzimba ezingakhuthaza ukuphumula kunye nokuxinwa kwengcinezelo, njenge-yoga okanye ukucamngca kwengqondo.
ILizwi
Ukunyamekela umntu obathandayo nge-muscular dystrophy akulula, kodwa baninzi bafumana isilivere esiliva, nokuba ngaba bafumana ingcamango ephilileyo, bephila ngokomoya, okanye bafumana ubuhle kwizinto ezincinci zobomi bemihla ngemihla.
Hlalani nizinzileyo kwaye nizinikezele kwindlela yenu yokunyamekela, khumbula ukunyamekela iimfuno zakho, uze ufikelele kwabanye ukubanceda.
> Imithombo:
> Darras BT. (2017). Iinkalo zeklinikhi kunye nokuxilongwa kweDuchenne kunye ne-Becker i-dystrophy ye-muscular. I-Patterson MC, uFirth HV, i-eds. Isemgangathweno. Waltham, MA: UpToDate Inc.
> Landfeldt E et al. Ukuqulunqa umthwalo wokunyamekela kwi-Duchenne muscular dystophy. J Neurol . Ngo-2016 ngoMeyi; 263 (5): 906-15.
> I-Muscular Dystrophy Association. (nd). Abanakekeli.
> ISikole kaZwelonke seNational and Disorders and Stroke. (2018). Ulwazi lweMiscular Dystrophy Page.