Ngaba ukhe weva ngemeko ethile kusapho lwakho, ingakumbi umntwana omncinci, apho izihlunu zomqolo zisiba buthathaka kancinci kancinci? Ngokwezonyango, sibiza oku ngokuthi yi-Spinal Muscular Atrophy (SMA) . NgesiSinhala, kukonakala kwezihlunu ezinxulumene nomqolo. Esi sisifo semfuza esidluliselwa kwizizukulwana ngezizukulwana. Yingakho obu buthathaka bezihlunu bungachaphazeli nje kuphela imisebenzi esihlala siyenza imihla ngemihla, njengokuphakamisa intloko yethu, ukuhlala ngaphandle koncedo, ukuhamba, ukuginya ukutya, kodwa nokuphefumla. Ngoko ke, iyeza elitsha elithathwa ngomlomo elinikwa njengonyango lwesi sifo se-SMA libizwa ngokuba yi -Evrysdi (risdiplam) . Namhlanje, siza kuthetha ngale yeza, indlela yokulisebenzisa, zithini izibonelelo zalo, kunye neziphumo ebezingalindelekanga ekufuneka uzazi.
Intshayelelo emfutshane ngesifo se-SMA kunye neentlobo zaso
Ngaphambi kokuba sithethe ngeyeza le-Evrysdi, masiqonde kancinci nge-SMA. Esi sifo sahlulwe saba ziintlobo ezininzi eziphambili ngokusekwe kwiminyaka apho iimpawu ziqala ukubonakala khona.
- I-SMA yokuqalisa kosana (Uhlobo 1): Olu lolona hlobo lunzima kakhulu. Iimpawu zihlala zibonakala ebuntwaneni, ngaphambi kokuba zifikelele kwiinyanga ezi-6 ubudala.
- I-SMA eqala kamva (Uhlobo 2 no-3): Kolu hlobo, iimpawu ziqala ukubonakala ebuntwaneni okanye ebusheni.
- I-SMA yokuqalisa komntu omdala (Uhlobo lwesi-4): Kule meko, iimpawu zibonakala kuphela emva kokuba umntu emdala.
Eli yeza i-Evrysdi lisetyenziselwa ukunyanga zonke ezi ntlobo. Linikwa nabantu abafunyenwe bene-SMA ngovavanyo lwemfuza kodwa abakabonakali iimpawu (ngaphambi kokuba kubekho iimpawu).
Ungayisebenzisa njani iyeza le-Evrysdi?
Le yinxalenye ebaluleke kakhulu, kuba ukusebenzisa iyeza ngokuchanekileyo kuchaphazela ngqo iziphumo .
Uza kufumana la mayeza kwikhemesti ekhethekileyo, ekwimo engamanzi. Ukuba wakha wafumana ibhotile equlethe into efana nomgubo, musa ukuyixuba uze uyisele. Ukuba oku kuyenzeka, qhagamshelana ngoko nangoko nendawo onikwe kuyo amayeza okanye ugqirha wakho.
Indlela yokulungiselela iyeza
Ugqirha wakho uza kukuxelela ngqo ukuba kufuneka uthathe malini kwaye ulinganise kwaye ulungiselele njani. Ibhotile yeyeza kufuneka ize nesiciko, iadaptha yebhotile, kunye neesirinji ezininzi ezinokusetyenziswa kwakhona. Ukuba kukho naziphi na kwezi zinto zilahlekileyo okanye zaphukile, thetha nogqirha wakho ngaphambi kokuba usebenzise iyeza.
- Kubalulekile ukusela amayeza ngexesha elifanayo yonke imihla .
- Ixesha elifanelekileyo lokusela iyeza kusemva kokutya . Ukuba lusana,Mnike emva kokuba ugqibile ukuncancisa .
- Ungaze udibanise eli yeza nefomyula okanye naluphi na olunye uhlobo lobisi, njengobisi lwenkomo.
- Emva kokusela iyeza, sela amanzi ukuqinisekisa ukuba liginywe ngokupheleleyo.
- Abanye abantu banikwa eli yeza ngetyhubhu yokutyisa . Kwimeko enjalo, kunokufuneka uhlambe ityhubhu ngamanzi emva kokuba unike iyeza.
Okubaluleke kakhulu: Sebenzisa isirinji ekhethekileyo oyinikiweyo ukulinganisa umthamo. Ukuba ilahlekile okanye iphukile, buza ugqirha wakho ngaphambi kokuba ufumane entsha. Isirinji esetyenzisiweyo ingahlanjwa, icocwe, kwaye isetyenziswe ngosuku olulandelayo.
Izinto ekufuneka uzilumkele xa usebenzisa amayeza
Emva kokufaka idosi yeyeza kwisirinji, kufuneka uyisele kwimizuzu emi-5 . Ukuba awukwazi ukuyisela kwisithuba sexesha elo, yilahle loo dosi uze ulungiselele idosi entsha.
Kwakhona, musa ukuvumela eli yeza lingene eluswini lwakho okanye emehlweni akho. Ukuba lingene eluswini lwakho, lihlambe kakuhle ngesepha namanzi. Ukuba lingene emehlweni akho, hlambulula amehlo akho kakuhle ngamanzi acocekileyo. Musa ukuxuba iibhotile ezimbini zamayeza ngedosi enye nangasiphi na isizathu.
Impumelelo yale mayeza yavavanywa njani?
Ngaphambi kokuba naliphi na iyeza lifike kwimarike, kwenziwa izifundo ezininzi zeklinikhi ukuze kufunyaniswe ukuba lisebenza kwaye likhuselekile kangakanani. Iyeza le-Evrysdi nalo liye lavavanywa kaninzi. Makhe sijonge nje.
| Uhlobo lovavanyo | Abo bathathe inxaxheba kuvavanyo | Iziphumo eziphambili ezibonweyo |
|---|---|---|
| I-SMA yokuqalisa kosana | Iintsana ezingama-58, ezimalunga neenyanga ezi-6 ubudala, ezine-Type 1 SMA. | Emva kweenyanga ezili-12 besebenzisa eli yeza, malunga nesinye kwisithathu bakwazile ukuhlala imizuzwana emi-5 ngaphandle koncedo. Emva kweenyanga ezingama-24, malunga nama-60% bakwazile ukuhlala ngaloo ndlela. |
| Ukuqala kwe-SMA kamva | Abantwana nabantu abadala abali-180 abaneminyaka eyi-2-25 ubudala abanesifo se-SMA sohlobo lwesibini okanye lwesithathu. (Abanye banikwa i-Evrysdi, abanye banikwa i-placebo.) | Umsebenzi womzimba uphucukile kwabo bathathe i-Evrysdi, ngelixa wehla kwabo bathathe i-placebo. |
| Abo bangakhange babonise zimpawu (Ngaphambi kweempawu) | Iintsana ezingama-26 ezingaphantsi kweeveki ezi-6 ubudala ezifunyaniswe zine-SMA ngovavanyo lwemfuza, kodwa zazingenazo iimpawu. | Ekupheleni kweenyanga ezili-12, ama-96% akwazile ukuhlala imizuzwana emi-5 ngaphandle koncedo. Ama-81% akwazile ukuhlala imizuzwana engama-30. |
Khumbula, ezi ziziphumo zophando. Iziphumo oza kuzifumana wena okanye umntwana wakho zinokwahluka. Ziyahluka ngokuxhomekeke kwimeko yomzimba yomntu ngamnye.
Zithini iziphumo ebezingalindelekanga ze-Evrysdi?
Njengakweyiphi na iyeza, i-Evrysdi inokubangela ezinye iziphumo ebezingalindelekanga ezincinci. Ezona zixhaphakileyo zezi:
- Ifiva
- Urhudo
- Ulusu olurhawuzelelayo okanye ukurhawuzelela
Ezi zezona ziphumo zixhaphakileyo, kodwa kukwakho nezinye iziphumo ezinokubakho.
Yintoni omawuyenze xa kuvela iziphumo ebezingalindelekanga?
Kwiimeko ezinje ngomkhuhlane, ungathetha nogqirha wakho uze ufumane idosi efanelekileyo yeparacetamol.
Ukuba unesisu esikhululekileyo, eyona nto ibalulekileyo kukuthintela ukuphelelwa ngamanzi emzimbeni.
- Banike amanzi amaninzi okusela.
- Ukuba lusana, luncancise rhoqo.
- Kulungile kakhulu ukunika abantwana abancinci isiselo esifana neJeevani (isicombululo sokubuyisela amanzi emzimbeni ngomlomo) .
- Sela amanzi amaninzi.
Eyona nto ibalulekileyo kukwazisa ugqirha wakho ngoko nangoko malunga nazo naziphi na iimpawu ezikukhathazayo okanye ezibonakala zingaqhelekanga. Musa ukuzinyanga nje kuphela.
Ngaba i-Evrysdi ikhuselekile ngexesha lokukhulelwa nokuncancisa?
Le yingxaki ebaluleke kakhulu.
- Ukuba ukhulelwe, uceba ukukhulelwa, okanye uncancisa, qiniseka ukuba uxelele ugqirha wakho ngaphambi kokuba uqale i-Evrysdi.
- Uluvo lwangoku luthi iyeza le-Evrysdi linokuba yingozi kumntwana osesiswini.
- Ngoko ke, ngaphambi kokuba uqale eli yeza, kufuneka wenze uvavanyo lokukhulelwa ukuqinisekisa ukuba awukhulelwanga.
- Kufuneka usebenzise uhlobo lokuthintela ukukhulelwa olusebenza kakuhle kakhulu ngelixa usela ipilisi kwaye ubuncinane inyanga emva kokuba uyekile ukusebenzisa ipilisi.
Zive ukhululekile ukuxoxa ngayo nayiphi na imibuzo okanye iinkxalabo onazo malunga noku nogqirha wakho.
Umyalezo Wokuya Ekhaya
- I-Spinal Muscular Atrophy (SMA) sisifo semfuza esibangela ubuthathaka bemisipha. I-Evrysdi liyeza lolwelo eliselwayo kwesi sifo.
- Ufanele usele amayeza kanye njengoko ugqirha wakho ekuxelela, ngexesha elifanayo yonke imihla, ngcono emva kokutya.
- Musa ukuxuba iyeza neemveliso zobisi. Sela amanzi emva kokusela iyeza.
- Iziphumo ezingezizo ezifana nomkhuhlane, iintlungu zesisu, kunye nokurhawuzelelwa lusu zinokubakho. Xelela ugqirha wakho ngazo naziphi na iimpawu eziphazamisayo.
- Ukuba ukhulelwe, uzama ukukhulelwa, okanye uncancisa, qiniseka ukuba uxoxa nogqirha wakho ngokuthatha eli yeza.
- Thetha ngokukhululekileyo nogqirha wakho ngayo nayiphi na imibuzo okanye izinto ezikuxhalabisayo. Leyo yindawo efanelekileyo yokufumana ulwazi oluchanekileyo.
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