Ngaba wakha waziva ngathi umntwana wakho omncinci ubuthathaka kancinci kunabanye abantwana, okanye ukuba unengxaki yokubamba intamo yakhe ithe tye? Okanye mhlawumbi umntwana wakho omdala uhlala ewa okanye enengxaki yokunyuka izinyuko? Usenokucinga ukuba ezi zizinto eziqhelekileyo uze uzityeshele, kodwa namhlanje siza kuthetha ngesizathu esinzulu esinokuba semva kwazo ngamanye amaxesha. Leyo yi -Spinal Muscular Atrophy , okanye i-SMA njengoko oogqirha besibiza njalo.
Kulungile, yintoni ke le SMA?
Ngamafutshane, esi sisifo semfuza. Ukuze izihlunu zomzimba wethu zishukume kwaye zisebenze, umyalezo kufuneka uphume engqondweni uye kwezo zihlunu. Ezi miyalezo zithwalwa ziiseli zemithambo-luvo ezikhethekileyo (ii-motor neurons) kwintambo yethu yomqolo. Ngokuchanekileyo, ezi seli zemithambo-luvo zezona zinika umyalelo kwizihlunu ukuba "zinciphe" kwaye "zandise."
Kwi-SMA, isiphene semfuza sibangela ukuba ezi seli zemithambo-luvo zibe buthathaka kancinci kancinci zize zife. Cinga ngayo njengocingo oluthwala umbane ukuya kwisixhobo sombane oluya lonakala kancinci kancinci, nto leyo enciphisa umbane olunokuwuthwala. Ngendlela efanayo, njengoko iiseli zemithambo-luvo zibuthathaka, imiyalezo eziyithumelayo kwimisipha nayo iyaba buthathaka. Ngenxa yoko, izihlunu ziyancipha kancinci kancinci kwaye ziphelelwe ngamandla ngenxa yokungasebenzisi. Oku sikubiza ngokuba yi-muscular atrophy.
Ziziphi iintlobo eziphambili ze-SMA?
I-SMA ayichaphazeli wonke umntu ngokufanayo. Yahlulwe yangamaqela aliqela aphambili ngokusekwe kwiminyaka apho iimpawu ziqala khona kunye nobunzima besifo. Amanqanaba okukhula umntwana awafikelelayo ngexesha lokukhula kwakhe - njengokubamba intamo yakhe, ukuhlala phantsi, nokuhamba - abaluleke kakhulu kolu hlu.
Ukuze kube lula ukuqonda, makhe sijonge ezi ntlobo kwitheyibhile.
| Uhlobo lwe-SMA | Ubudala bokuqala kweempawu | Iimpawu eziphambili kunye nesimo |
|---|---|---|
| Uhlobo 0 | Ngaphambi okanye emva nje kokuzalwa | Uhlobo olunzima kakhulu nolungaqhelekanga. Ludla ngokubulala. |
| Uhlobo 1 | Ukususela ekuzalweni ukuya kwiinyanga ezi-6 | Uhlobo oluqhelekileyo. Ukungakwazi ukubamba intamo phezulu. Imilenze nemilenze iyatyibilika. Ukungakwazi ukuhlala ngaphandle kwenkxaso. Ubunzima bokuphefumla nokuginya. |
| Uhlobo 2 | Phakathi kweenyanga ezi-3 nezili-15 | Unokuhlala ngaphandle kwenkxaso, kodwa akanakuma okanye ahambe. Ubuthathaka buncinci ezingalweni kunasemilenzeni. Ubunzima bokuphefumla xa ulele bunokubakho. |
| Uhlobo 3 | Emva kweenyanga ezili-18 ukuya kutsho ekubeni ngumntu omdala | Uyakwazi ukuhamba nokuma yedwa, kodwa usoloko ewa, enengxaki yokunyuka izinyuko, kwaye enengxaki yokuphuma esitulweni. Ekuhambeni kwexesha, uncedo lwesitulo esinamavili lunokufuneka. |
| Uhlobo 4 | Xa umntu emdala (kwiminyaka engama-20 ukuya kwengama-30) | Uhlobo olungaqhelekanga. Ubuthathaka obuncinci bemisipha kunye nobunzima bokuphefumla obuncinci bunokubakho. Iimpawu zikhula kancinci kakhulu. Ulindelo lobomi aluchaphazeleki. |
Ngoku masithethe ngeentlobo nganye kwezi ngokweenkcukacha ezithe vetshe.
Uhlobo lwe-SMA 1 (isifo sikaWerdnig-Hoffmann)
Olu lolona hlobo luqhelekileyo nolunzima. Aba bantwana babonisa iimpawu ngaphambi kokuba babe neenyanga ezi-6 ubudala. Kwiimeko ezininzi, iimpawu ziqala ukubonakala kwangethuba kwiinyanga ezi-3. Eli liva elibuhlungu kakhulu kumama notata. Usana luziva lungenabomi. Njengonodoli onxitywayo. Intamo ayinakubanjwa ithe nkqo. Amalungu ayaxhoma. Ekubeni kunzima ukusela ubisi nokuginya ukutya, ukungabikho kokutya okunempilo kunokwenzeka. Kwakhona, izihlunu ezinceda ekuphefumleni ziyabuthathaka, ngoko ke umngcipheko wosulelo lokuphefumla uphezulu. Inyani ebuhlungu kukuba uninzi lwaba bantwana abaphili iminyaka emi-2.
Uhlobo lwe-SMA 2 (isifo saseDubowitz)
Olu luhlobo lobunzima obuphakathi. Khawuthelekelele, umntwana wakho uhleli kakuhle kwaye edlala, kodwa akazami ukuvuka okanye ukuhamba emva kweenyanga ezi-6-7. Olu luhlobo lwesibini lwesi sifo. Iimpawu zihlala ziqala ngaphambi kokuba umntwana akwazi ukuma aze ahambe yedwa. Aba bantwana banokuba namandla angaphezulu kancinci ezingalweni zabo kunasemilenzeni yabo. Kodwa abakwazi ukuma baze bahambe bodwa. Njengoko bekhula, mhlawumbi xa besebancinci, banokufuna inkxaso yokuhlala. Banokuba nobunzima bokuphefumla ngexesha lokulala, ngoko ke oku kufuneka kuqwalaselwe. Ngokuxhomekeke kubunzima beempawu, ixesha lokuphila linokuba lifutshane kuneliqhelekileyo.
Uhlobo lwe-SMA 3 (Kugelberg-Welander syndrome)
Olu luhlobo oluncinci. Iimpawu zolu hlobo zibonakala ukususela kwiminyaka eyi-1 1/2 (iinyanga ezili-18) ukuya kwiminyaka yokufikisa. Aba bantwana banokuhamba baze bame bodwa. Nangona kunjalo, ingxaki kukuba bawa rhoqo, banengxaki yokubaleka nokutsiba, kwaye bakufumanisa kunzima kakhulu ukuphakama esitulweni okanye ukunyuka izinyuko. Njengoko izihlunu zibuthathaka ngokuhamba kwexesha, banokufuna uncedo lwesitulo esinamavili kamva ebomini. Kodwa iindaba ezimnandi zezokuba aba bantwana banokuphila ubomi obuqhelekileyo.
Uhlobo lwe-SMA 4 (i-SMA yabantu abadala)
Olu luhlobo olungaqhelekanga kakhulu. Iimpawu ziqala xa umntu emdala, ngesiqhelo xa eneminyaka engama-20 okanye engama-30. Usenokuba nobuthathaka obuncinci kwiingalo zakho nasemilenzeni, kwaye ngamanye amaxesha uphelelwa ngumphefumlo. Ezi mpawu zikhula kancinci kangangokuba abanye abantu abazi nokuba banesi sifo kangangeminyaka. Akuchaphazeli ixesha lokuphila komntu.
Khumbula, kwiimeko ezinje, eyona nto ibalulekileyo kukufumanisa isifo ngokukhawuleza kwaye ufumane ingcebiso efanelekileyo kwezonyango.
Wenza ntoni xa ubona iimpawu ezinje?
Ukuba ukrokrela ukuba umntwana wakho uneempawu ezidweliswe kweli nqaku, nceda ungoyiki kwaye ngoko nangoko udibane nogqirha ofanelekileyo, ingakumbi ugqirha wabantwana. Musa ukuzama ukuzixilonga ngokusekelwe kwi-intanethi okanye kumarhe. Oku kunokuba yingozi. Ugqirha uza kumxilonga umntwana wakho kwaye, ukuba kuyimfuneko, akuthumelele uvavanyo lwemfuza ukuqinisekisa uhlobo oluchanekileyo lwesi sifo. Ukuba imeko iqinisekisiwe, uya kwaziswa ngohlobo oluthile lolawulo, i-physiotherapy, kunye nonyango olutsha nolusandula ukwenzeka.
Umyalezo Wokuya Ekhaya
- I-Spinal Muscular Atrophy (SMA) yimeko ebangelwa kukungabi namandla kwemithambo-luvo kwi-spinal cord.Sisifo esibangelwa lufuzo esibangela ukuphelelwa yimisipha .
- Kukho iintlobo ezininzi eziphambili, kuxhomekeke kwiminyaka apho iimpawu ziqala khona kunye nobunzima bazo.
- Ukuba ubona iimpawu zokuba umntwana wakho uyakhubeka, ukuba nobunzima bokukhula, okanye ukuwa rhoqo, musa ukuzibetha ngoyaba ezo mpawu.
- Kubaluleke kakhulu ukuphepha ukuzixilonga ngokwakho kwaye ngoko nangoko ubone ugqirha ofanelekileyo ukuze ufumane ingcebiso efanelekileyo.
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