Ngaba kukho umntu kusapho lwakho okanye umntu omaziyo one-SMA, okanye i-Spinal Muscular Atrophy ? Usenokuba uzibuza, mhlawumbi ude woyike, ukuba oku kuya kutshintsha njani ngokuhamba kwexesha, kunye nendlela iimpawu eziya kuba mandundu ngayo. Enyanisweni, indlela esi sifo esiqhubeka ngayo iyahluka kakhulu kumntu nomntu. Kuxhomekeke ekubeni loluphi uhlobo lwe-SMA onalo, ukuba iimpawu zaqala nini, kunye nokuba wawufikelele kwinqanaba elingakanani lokukhula komzimba ngelo xesha. Makhe sithethe ngale nto ngokulula nangokucacileyo namhlanje.
Isifo se-SMA siqhubeka njani?
Esi sifo sichaphazela kakhulu izihlunu eziphakathi emzimbeni, njengomqolo kunye namaqaqa. Oku kubonakala ngakumbi kunezihlunu ezikude kakhulu nombindi womzimba (njengeminwe kunye neenzwane).
Cinga ngale ndlela, izihlunu ezisemathangeni akho, ezikuncedayo ukuba ume, ziba buthathaka kunezihlunu ezisemilenzeni yakho. Kwakhona, ubuthathaka emilenzeni yakho bubonakala ngakumbi phambi kweengalo zakho.
Abanye abantu banokuphelelwa ngamandla kancinci kancinci ezandleni zabo. Nangona kunjalo, ngokuqhelekileyo zizandla ezigcina amandla amaninzi ngokuhamba kwexesha. Nokuba izandla zibuthathaka, zisenokukwazi ukwenza imisebenzi yemihla ngemihla , njengokusebenzisa ikhompyutha.
Enye ingxaki enkulu ehambisana ne-SMA ngumqolo ogobileyo , esiwubiza ngokuba yi-scoliosis ngokwezonyango. Abantwana abaninzi abane-SMA bakhula nale meko besebancinci. Oku kungenxa yokuba izihlunu ezixhasa umqolo ziba buthathaka kancinci kancinci.
Ekubeni i-scoliosis inokubangela ubunzima bokuphefumla, kubaluleke kakhulu ukuthetha nogqirha wakho ngale nto rhoqo kwaye ulandele imiyalelo efunekayo.
Umntu one- scoliosis unokufumana ezi mpawu zilandelayo:
- Amagxa kunye nezinqe azikho kwinqanaba elifanayo.
- Elinye igxalaba likhulu okanye liphuma phambili kunelinye.
- Isiqu esinye siphezulu kunesinye.
Olu gqabhuko lomqolo lunokubangela ukungakhululeki kunye nentlungu. Ukuba ugqabhuko lukhuni, lunokucinezela imiphunga kwaye luchaphazele ukuphefumla. Oogqirha badla ngokuzama ukulawula imeko ngokusebenzisa i-brace ekhethekileyo ngaphandle kotyando de umntwana akhule ngokupheleleyo. Nangona kunjalo, ngenxa yokuba ugqabhuko lomqolo lunokuba mandundu ngokuhamba kwexesha, ugqirha wakho uya kuba nomdla kakhulu kuzo naziphi na iingxaki zokuphefumla okanye zokuhamba ezenzekayo kule nkalo.
Okwenzekayo emva koko kuxhomekeke kuhlobo lwe-SMA onayo.
Iintlobo ze-SMA kunye nohlobo lwazo
I-SMA yahlulwe yaba ziintlobo ezine eziphambili. Ezi zahlulwe ngokusekwe kwiminyaka apho iimpawu ziqala khona kunye nomsebenzi womzimba ophezulu wesigulana. Makhe sijonge uhlobo ngalunye ngokwahlukeneyo.
| Uhlobo lwe-SMA | Ubudala bokuqala kweempawu | Iimpawu eziphambili kunye nokuya phambili |
|---|---|---|
| Uhlobo 1 (Isifo sikaWerdnig-Hoffmann) | Ekuzalweni okanye ngaphambi kweenyanga ezi-6 | Kunzima kakhulu. Ngaphandle konyango, kunzima ukuhlala phantsi okanye ukulawula intloko. Kunzima ukuncancisa ubisi okanye ukuginya ukutya. Kubonakala ngathi umntu uphefumla esiswini. Usulelo olukhulu lokuphefumla lunokwenzeka rhoqo. |
| Uhlobo 2 | Phakathi kweenyanga ezi-6 nezi-18 | Banokuhlala phantsi, kodwa abakwazi ukuhamba ngaphandle koncedo. Njengoko bekhula, banokufuna uncedo nokuba bahlale phantsi. Ukungcangcazela kunokubonakala. |
| Uhlobo 3 (Isifo sikaKugelberg-Welander) | Emva kweenyanga ezili-18 okanye emncinci | Ndiyakwazi ukuhamba. Kodwa ngokuhamba kwexesha, ndihlala ndiwa, kuba nzima ukunyuka nokuhla izinyuko. Kunzima ukuphakama kwakhona emva kokulala phantsi. |
| Uhlobo 4 | Xa bekwiminyaka yabo yama-20 ukuya kuma-30 (ubudala) | Aziqhelekanga. Iimpawu zikhula kancinci kakhulu. Ungahamba xa umdala, kodwa ubuthathaka bemisipha buyenzeka njengoko ukhula. |
Okungakumbi malunga nohlobo 1
Olu lolona hlobo lubi kakhulu lwe-SMA. Ikwabizwa ngokuba sisifo sikaWerdnig-Hoffmann . Sifunyaniswa xa umntwana ezalwa okanye kwiinyanga ezi-6 zokuqala. Ubuthathaka bemisipha bukhula ngokukhawuleza. Ngaphandle konyango, umntwana akayi kukwazi ukuhlala okanye ukuma.
Umntwana ungondlekanga ngenxa yobunzima bokuncanca nokuginya. Abanye abantwana banokubonakala bephefumla ngesisu sabo . Oku kungenxa yokuba izihlunu zokuphefumla esifubeni azisebenzi kakuhle, ngoko ke baphefumla besebenzisa i-diaphragm kuphela. Oku kunokukhokelela kwiingxaki zokuphefumla ezixhaphakileyo, ngamanye amaxesha ezisongela ubomi, kunye nosulelo olukhulu.
Okungakumbi malunga nohlobo lwesibini
Olu hlobo lufunyaniswa luphakathi kweenyanga ezi-6 nezili-18 ubudala. Izinga lokukhula kwesi sifo liyahluka kakhulu ukusuka komnye umntwana ukuya komnye. Abantwana abanesifo sohlobo lwesibini banokuhlala phantsi bengancediswanga kwasekuqaleni. Nangona kunjalo, xa befikelela kwiminyaka yabo yokufikisa, kunokuba nzima ukuhlala phantsi bengancediswanga.
Kwakhona, aba bantwana abakwazi ukuhamba ngaphezu kwamanyathelo ambalwa ngaphandle koncedo. Ngokuqhelekileyo, iminwe yabo iqala ukungcangcazela (ukungcangcazela). Kwane-tendon reflex inokulahleka xa ugqirha ebetha idolo ngesando esincinci.
Okungakumbi malunga nohlobo lwesithathu
Oku kukwabizwa ngokuba yi -Kugelberg-Welander syndrome . Idla ngokufunyaniswa xa ikwiinyanga ezili-18 ubudala, kodwa ngamanye amaxesha iimpawu zinokuqala xa umntu efikisa.
Ukuqhubela phambili kolu hlobo lwe-SMA kuxhomekeke ekubeni umntwana ufunda intshukumo engakanani. Aba bantwana banokufunda ukuhamba. Kodwa ekuhambeni kwexesha, baqala ukuwa rhoqo, banengxaki yokunyuka izinyuko, kwaye banengxaki yokuvuka belele. Njengakwezinye iintlobo ze-SMA, basengozini enkulu yosulelo lokuphefumla njengoko izihlunu zabo zibuthathaka.
Okungakumbi malunga nohlobo lwesi-4
Olu lolona hlobo lungaqhelekanga lwe-SMA. Ifunyanwa kubantu abakwiminyaka yabo yama-20 okanye engama-30. Esi sifo siqhubeka kancinci kakhulu. Abantu abanolu hlobo banokuhamba xa sele bekhulile, kodwa ubuthathaka bemisipha bunokukhula kancinci kancinci njengoko bekhula.
Umyalezo Wokuya Ekhaya
- I-Spinal Muscular Atrophy (SMA) sisifo esenza izihlunu zibe buthathaka ngokuhamba kwexesha. Nangona kunjalo, ayichaphazeli ingqondo. Ubulumko kunye neemvakalelo zesigulana zihlala ziqhelekile.
- Uhlobo lwe-SMA wena okanye umntwana wakho onalo luchaza ukuba esi sifo siza kuba sikhulu kangakanani na ngokukhawuleza.
- Ubunzima bokuphefumla kunye ne-scoliosis ziimeko eziqhelekileyo ezinxulumene ne-SMA. Ezi zifuna ingqalelo ekhethekileyo kunye nolawulo lwezonyango.
- Kubaluleke kakhulu ukusebenzisana ngokusondeleyo nogqirha wakho ukuze ulawule esi sifo, uye kwiikliniki ngexesha, kwaye ulandele imiyalelo enikiweyo.
- Unyango lwanamhlanje luye lwaphucula kakhulu umgangatho wobomi kunye nobomi bezigulane ze-SMA, ngoko ke ungaze ulahle ithemba.
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