Ngaba umntwana wakho uyawa rhoqo? Okanye ngaba ukufumanisa kunzima kuye ukuphakama, ukunyuka izinyuko, ukubaleka, okanye ukutsiba? Ngamanye amaxesha ezi zizinto eziqhelekileyo ezenzeka kubantwana abancinci njengoko bekhula. Nangona kunjalo, ngamanye amaxesha kunokubakho ingxaki ngezihlunu ezingasemva kwabo ezifuna ingqalelo. Yiyo loo nto siza kuthetha ngeqela lezifo eziye zibuthathaka kancinci kancinci izihlunu.
Yintoni iMuscular Dystrophy?
Ngamafutshane, i-muscular dystrophy ligama eliqhelekileyo leqela lezifo ezenza buthathaka izihlunu zomzimba wethu ngokuhamba kwexesha kwaye zinciphise ukuguquguquka kwazo. Eyona nto ibangela oku sisiphene kwiijini ezinceda ukugcina izihlunu zethu ziphilile.
Abanye abantu basenokuba nesi sifo besebancinci, ngelixa abanye besenokungabonakalisi zimpawu de babe neminyaka elishumi okanye elishumi elinesihlanu ubudala, okanye bade babe badala.
Indlela esi sifo esichaphazela ngayo umntu ngamnye yahlukile. Kuxhomekeke kuhlobo lwesifo. Kwabaninzi, imeko inokuba mandundu kancinci kancinci ngokuhamba kwexesha. Abanye abantu banokude balahlekelwe kukuhamba okanye ukuthetha. Nangona kunjalo, oku akwenzeki kubo bonke abantu . Abanye abantu baphila ubomi obuqhelekileyo iminyaka emininzi beneempawu ezincinci. Ngoko ke akukho mfuneko yokoyika kwangaphambili.
Ziziphi iintlobo eziphambili zale nto?
Kukho iintlobo ezingaphezu kwama-30 ze-muscular dystrophy. Kodwa kukho iintlobo eziphambili ezili-9 esizibona rhoqo. Uhlobo ngalunye lwahlukile ngokwejini ebangela oku, izihlunu ezichaphazelekileyo, ubudala beempawu eziqala ngabo, kunye nesantya esiqhubeka ngaso esi sifo.
| Igama leSifo | Inkcazo emfutshane |
|---|---|
| I-Duchenne muscular dystrophy (DMD) | Olu lolona hlobo luxhaphakileyo. Luchaphazela kakhulu abafana. Luqala phakathi kweminyaka emi-3 ukuya kwemi-5 ubudala. |
| I-Becker muscular dystrophy | Ifana neDuchenne, kodwa iimpawu azikho nzima kangako. Oku kuqheleke kakhulu nakubafana. Iimpawu zibonakala phakathi kweminyaka eli-11-25. |
| I-Myotonic muscular dystrophy | Uhlobo oluqhelekileyo phakathi kwabantu abadala. Uphawu oluphambili kukungakwazi ukuphumza izihlunu emva kokuba zifinyeziwe. Zinokuchaphazela amadoda nabafazi. Zidla ngokuqala kwiminyaka yoo-20. |
| I-Congenital muscular dystrophy | Iqala ekuzalweni okanye emva nje kokuzalwa. |
| I-Limb-girdle muscular dystrophy | Ichaphazela izihlunu ezijikeleze izinqe nasemagxeni. Ingaqala xa umntu efikisa okanye eneminyaka engama-20. |
| I-Facioscapulohumeral muscular dystrophy | Ichaphazela izihlunu zobuso, amahlombe, kunye neengalo ezingaphezulu. Ingachaphazela abantu ukususela kwiminyaka eselula ukuya kubantu abadala abakwiminyaka engama-40. |
| I-Distal muscular dystrophy | Ichaphazela izihlunu zeengalo, imilenze, izandla kunye neenyawo. Idla ngokuqala phakathi kweminyaka engama-40-60 ubudala. |
| I-Oculopharyngeal muscular dystrophy | Iqala ngeminyaka yoo-40 noo-50. Ibangela ubuthathaka bemisipha ebusweni, entanyeni nasemagxeni, ukugoba kwamehlo (i-ptosis), kunye nobunzima bokuginya (i-dysphagia). |
| Ukungasebenzi kakuhle kwemisipha ka-Emery-Dreifuss | Ihlala ichaphazela abafana kwaye iqala malunga neminyaka eli-10 ubudala. Ukongeza ekubuthathaka kwemisipha, iingxaki zentliziyo nazo zinokubakho. |
Kutheni olu hlobo lwesifo lusenzeka? (Izizathu)
Esi sifo sinokufunyanwa njengelifa, okanye singaqala sivele kuwe okanye kumntwana wakho ngaphandle kokuba nabani na kusapho lwakho abe naso. Oku kubangelwa sisiphene kwiijini .
Cinga nje, ezi jini ziyalela iiseli emizimbeni yethu ukuba zenze iiproteni ezizidingayo ukuze zenze imisebenzi eyahlukeneyo. Kufana neresiphi yokutya. Ukuba ijini inesiphako, iiseli zinokwenza iproteni engalunganga, iproteni encinci kuneemfuno zazo, okanye iproteni eyonakeleyo.
Abantu abane-muscular dystrophy banesiphako kwiijini ezivelisa iiproteni ezigcina izihlunu ziphilile kwaye zomelele. Umzekelo, eDuchenne naseBecker, iproteni ebizwa ngokuba yi-dystrophin ayiveliswa kangako. Le proteni ye-dystrophin iqinisa izihlunu kwaye izikhusela ekonakaleni. Xa le proteni ilahlekile, izihlunu zonakala lula kwaye zibe buthathaka.
Ungayibona njani? (Iimpawu)
Iimpawu zeentlobo ezininzi zale meko ziqala ukubonakala ebuntwaneni okanye ebusheni. Ngokubanzi, umntwana onesi sifo unokubonakalisa ezi mpawu zilandelayo:
- Ukuwa rhoqo
- Ukuziva ubuthathaka kwimisipha
- Ukuqaqamba kwemisipha
- Ubunzima bokuvuka kwindawo yokuhlala, ukunyuka izinyuko, ukubaleka, okanye ukutsiba
- Ukuhamba ngeenzwane okanye ukuhambahamba ngeenyawo
Kubalulekile kuthi njengabazali ukuba siqwalasele iintshukumo zabantwana bethu, ingakumbi indlela abadlala ngayo. Ukuba ubona into engaqhelekanga, ungathandabuzi ukuthetha nogqirha.
Ukongeza, abanye abantu banokubona iimpawu ezifana nezi:
- I-Scoliosis
- Ijwabu eligobileyo
- Iingxaki zentliziyo
- Ubunzima bokuphefumla okanye ukuginya ukutya
- Ukukhubazeka kokubona
- Ubuthathaka bemisipha yobuso
Ugqirha ukuqinisekisa njani oku? (Ukuxilongwa)
Ugqirha uza kwenza uvavanyo oluninzi ukuze abone ukuba umntwana wakho ubuthathaka kwizihlunu. Okokuqala, uza kwenza uvavanyo lomzimba ngokubanzi, akubuze ngembali yempilo yosapho lwakho, aze akubuze ngeempawu zomntwana wakho.
Emva koko, iimvavanyo ezininzi ezifana nezi zinokwenziwa ukuze kuthintelwe ezinye iimeko ezinokubangela ubuthathaka bemisipha kunye nokufumanisa isifo ngokuqinisekileyo.
| Igama lovavanyo | Ngamafutshane, nantsi into oyenzayo... (Ingcaciso elula) |
|---|---|
| Uvavanyo lwegazi | Amanqanaba ee-enzyme ezithile eziqokelelana egazini xa izihlunu zonakele ayajongwa. |
| I-Electromyography (EMG) | Ii-electrode ezincinci zifakwa kwimisipha kwaye umsebenzi wombane wemisipha uyalinganiswa. |
| i-biopsy yemisipha | Inxalenye encinci kakhulu yesihlunu ithathwa ngenaliti ize ihlolwe ngemakroskopu. Oku kunokunceda ekuchongeni ukuba zeziphi iiproteni ezingekhoyo okanye ezonakeleyo. |
| I-Electrocardiogram (EKG/ECG) | Imiqondiso yombane yentliziyo ilinganiswa ukujonga ukuba isantya sentliziyo kunye nesingqisho ziphilile na. |
| Uvavanyo lwe-genetic | Ngokuvavanya isampuli yegazi, kunokwenzeka ukufumanisa ukuba zeziphi ii-genes ezineengxaki ezibangela ubuthathaka bemisipha. |
Zithini iindlela zonyango?
Okwangoku, akukho nyango lwe- muscular dystrophy. Nangona kunjalo, kukho unyango oluninzi olunokunceda ukulawula iimpawu, ukwenza ubomi bube lula, kwaye lunike umntwana wakho umgangatho wobomi ongcono kangangoko. Ugqirha wakho uya kucebisa unyango olufanelekileyo ngokusekelwe kuhlobo lwemeko umntwana wakho anayo.
- Unyango lomzimba: Iindlela ezahlukeneyo zokuzilolonga kunye nokolula umzimba zinceda ukugcina izihlunu ziqinile kwaye ziguquguquka.
- Unyango lomsebenzi:Umntwana ufundiswa indlela yokwenza imisebenzi yemihla ngemihla (umz., ukunxiba, ukubhala) kangangoko anako. Ukwafundiswa nendlela yokusebenzisa izixhobo ezifana nezitulo ezinamavili kunye neenduku.
- Unyango lokuthetha: Ukuba unengxaki yokuthetha ngenxa yobuthathaka bobuso bakho okanye izihlunu zomqala, siza kukufundisa iindlela ezilula zokwenza oko.
- Amayeza:
- Amayeza athile, afana ne-`Eteplirsen (Exondys 51)`, anyusa imveliso ye-dystrophin kwiintlobo ezithile ze-DMD.
- Amayeza anciphisa ukuqaqamba kwemisipha.
- Amayeza oxinzelelo lwegazi kwiingxaki zentliziyo.
- Ii-steroids ezifana ne-'Prednisone' zinokucothisa ukonakala kwezihlunu. Nangona kunjalo, ezi zineziphumo ebezingalindelekanga kwaye mazisetyenziswe kuphela phantsi kwengcebiso kagqirha .
- Utyando: Utyando lunokufuneka xa kukho iingxaki ezifana ne-spinal stenosis kunye neengxaki zentliziyo.
Izinto ekufuneka ziqwalaselwe xa unyamekela umntwana
Kuqhelekile ukuba abazali bazive bebuhlungu xa amandla omntwana wabo ephela kancinci kancinci kwaye bengakwazi ukubaleka nokudlala njengabanye abantwana. Kodwa ungamnceda umntwana wakho aphile ngolonwabo nangona enengxaki.
- Nika umntwana wakho ukutya okunempilo: Ukutya okunesondlo esifanelekileyo kunceda umntwana wakho ahlale enobunzima obusempilweni. Oku kunokunciphisa izinto ezifana nobunzima bokuphefumla.
- Hlala ukhuthele: Ukuzilolonga okungenampembelelo ingako njengokudada kunokunceda ekuqiniseni izihlunu. Buza ugqirha wakho wezonyango ngale nto.
- Sebenzisa izixhobo zokuncedisa: Khuthaza umntwana wakho ukuba asebenzise izitulo ezinamavili, iintonga, njl. ukuba kuyimfuneko.
- Hlala uqinile: Thetha nosapho, abahlobo, okanye umcebisi malunga noxinzelelo, usizi, nomsindo owuvayo ngeli xesha lohambo. Kwakhona, amaqela enkxaso kunye nabanye abazali babantwana abanale meko anokuba ngumthombo omkhulu wamandla.
Esi sifo asibachaphazeli bonke abantu ngokufanayo. Abanye abantwana balahlekelwa ngamandla emisipha ngokukhawuleza. Abanye banokuphelelwa ngamandla ngokukhawuleza. Ngoko ke, kubalulekile ukuthetha ngokukhululekileyo nogqirha womntwana wakho ngemeko yakhe kwaye wenze isicwangciso sonyango esimfaneleyo.
Umyalezo Wokuya Ekhaya
- I-Muscular dystrophy sisifo semfuza esibangela ukuba izihlunu zibe buthathaka ngokuhamba kwexesha.
- Iimpawu zokuqala ebantwaneni zingabandakanya ukuwa rhoqo, ubunzima bokuvuka, kunye nokuhamba ngeenzwane.
- Ngenxa yokuba kukho iintlobo ezininzi zesi sifo, kubalulekile ukufuna iingcebiso zonyango ukuze ufumane ukuxilongwa ngokuchanekileyo.
- Nangona kungekho unyango olupheleleyo, unyango lomzimba, amayeza, kunye nolunye unyango lunokulawula iimpawu kwaye lugcine umgangatho wobomi ulungile.
- Kubaluleke kakhulu ukubonelela ngenkxaso yengqondo kunye nendawo entle yomntwana kunye nosapho. Thetha nogqirha wakho ngayo nayiphi na into ekuxhalabisayo.
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