Ukubona usana olusandul’ ukuzalwa lusokola kwaye luqala ukuhamba luyolo olukhulu kuye nawuphi na umama okanye utata. Kodwa ngamanye amaxesha, sibona ukungabikho kwamandla emisipha kunye nokunyakaza kwabanye abantwana. Esinye isizathu soku singaba yimeko esithetha ngayo namhlanje ebizwa ngokuba yi -Spinal Muscular Atrophy , okanye i-SMA ngamafutshane. Nangona le yingongoma enzulu, kubaluleke kakhulu ukuba nolwazi olufanelekileyo ngayo.
Ngamafutshane, yintoni i-Spinal Muscular Atrophy (SMA)?
I-Spinal Muscular Atrophy (SMA) sisifo semfuza. Izihlunu emzimbeni wethu zilawulwa luhlobo lweseli yemithambo-luvo. Sizibiza ezi neurons ze-motor . Cinga ngayo ngathi ingqondo yakho yeyona sixhobo sakho samandla. Ukusuka apho, ezi neurons ze-motor 'ziingcingo' ezithwala imiqondiso yombane ukuya kwizihlunu ezingalweni nasemilenzeni yakho. Kwi-SMA, ezi neurons ze-motor kwi-spinal cord zonakala kwaye zibuthathaka kancinci kancinci. Xa ezi 'ngcingo' zibuthathaka, imiqondiso evela engqondweni ayifikeleli kwizihlunu ngokufanelekileyo. Ngenxa yoko, izihlunu ziqala ukufinyela kwaye zibuthathaka.
Ingachaphazela abantwana kunye nabantu abadala. Ukuze umntwana abe nesi sifo, ijini ebangela esi sifo kufuneka ifuzwe ngabazali bobabini . Malunga nomntu omdala omnye kwabangama-50 kuluntu usenokuba ngumthwali walesi sifo. Oku kuthetha ukuba nangona benaso esi sifo emzimbeni wabo, ababonisi zimpawu. Nangona kunjalo, kukho ithuba lokuba umntwana azuze esi sifo kubazali ababini abasithweleyo. Ngokomyinge, malunga nomnye kubantwana abali-10,000 abazalwayo unokufumana esi sifo.
Okubalulekileyo kukuba, ubunzima be-SMA buyahluka ngokuxhomekeke kwiminyaka apho iimpawu ziqala ukubonakala khona. Ngokubanzi, ukuba iimpawu ziqala ebuntwaneni, imeko inokuba nzima ngakumbi.
Iintlobo eziphambili zesifo se-SMA kunye neempawu zazo
Oogqirha bahlula esi sifo sibe ziintlobo ezininzi eziphambili ngokusekwe kwixesha lokuqala kunye nobunzima beempawu. Makhe sijonge uhlobo ngalunye ngokweenkcukacha.
| Uhlobo lwe-SMA | Ixesha lokuqala kweempawu | Iimpawu eziphambili kunye neenkcukacha |
|---|---|---|
| Uhlobo 0 | Ukususela ngaphambi kokuzalwa |
|
| Uhlobo 1 (Isifo sikaWerdnig-Hoffmann) | Malunga neenyanga ezi-3 | |
| Uhlobo 2 | Phakathi kweenyanga ezisi-7 nezili-18 | |
| Uhlobo 3 (Isifo saseKugelberg-Welander) | Ebuntwaneni okanye ebutsheni | |
| Uhlobo 4 | Xa umntu emdala (ngesiqhelo emva kweminyaka engama-30) |
Kutheni ufanele ukhathazeke ngezi mpawu?
Njengoko ubona, i-SMA ichaphazela kakhulu izihlunu ezinceda umzimba ukuba ushukume. Kodwa ayipheleli apho.
- Ukuphefumla: Izihlunu esifubeni zisinceda siphefumle ngaphakathi nangaphandle. Xa ezi zihlunu zibuthathaka, asikwazi ukuphefumla kakuhle. Oku kunokukhokelela kwiintsholongwane zokuphefumla ezixhaphakileyo ezifana ne-pneumonia.
- Ukutya: Izihlunu zomqala nomlomo zisinceda siginye size sincancise ukutya. Xa zibuthathaka, umntwana akanakukwazi ukuncancisa okanye ukuginya ukutya ngendlela efanelekileyo. Oku kunokukhokelela ekungondlekini kakuhle.
- Imilo yomzimba: Xa izihlunu ezinceda ukugcina umqolo uthe tye zibuthathaka, umqolo uqala ukugoba (i-scoliosis). Oku kunokwenza ukuphefumla kube nzima ngakumbi.
Ngaba kukho unyango?
Akukabikho nyango lwe-SMA. Nangona kunjalo, kwiminyaka yakutshanje, inkqubela phambili kwisayensi yezonyango iye yazisa unyango olutsha oluninzi olunokulawula ukuqhubela phambili kwesi sifo nokulawula iimpawu.
Umzekelo, unyango oluvunyiweyo yi-US FDA zezi:
- I-Nusinersen (iSpinraza)
- I-Onasemnogene abeparvovec-xioi (Zolgensma)
Olu nyango luyinkimbinkimbi kakhulu kwaye lubiza kakhulu olusebenza kwinqanaba lemfuza. Kubalulekile ukuthetha nogqirha wakho malunga nokufumaneka kwalo kunye nokufumaneka kwalo eSri Lanka.
Kubalulekile: Yingcali ehlola wena okanye umntwana wakho kuphela emele igqibe ukuba loluphi unyango olulungele wena okanye umntwana wakho. Ungaze wenze izigqibo ngokusekelwe kulwazi olufumaneka kwi-Intanethi.
Ukongeza, i-physiotherapy, imithambo yokuphefumla, iingcebiso ngesondlo, kwaye, ukuba kuyimfuneko, utyando (umz., ukuhlanganiswa komgogodla) kunceda ukuphucula umgangatho wobomi besigulana kunye nokuthintela iingxaki.
Umyalezo Wokuya Ekhaya
- I-Spinal Muscular Atrophy (SMA) sisifo semfuza esichaphazela iiseli zemithambo-luvo ezilawula izihlunu zethu.
- Esi sifo sahlulwe sahlulwe saziintlobo ngeentlobo ngokusekwe kwiminyaka apho iimpawu ziqala khona. Ukuba iimpawu ziqala ebuntwaneni, imeko inokuba mandundu ngakumbi.
- Ukuba umzimba womntwana wakho "unamaqhuqhuva" kwaye kunzima ukuphakamisa intloko yakhe, ukuqengqeleka, okanye ukuhlala phantsi, bonana nogqirha wezingane ofanelekileyo ngoko nangoko.
- Nangona i-SMA ingenakunyangwa ngokupheleleyo, unyango lwanamhlanje kunye neendlela ezifana nonyango lomzimba zinokunceda ukulawula isifo kunye nokuphucula umgangatho wobomi.
- Nasiphi na isigqibo sonyango kufuneka senziwe kuphela emva kokuxoxa nogqirha wakho.
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