Ngaba wena okanye umntu osapho lwakho une-Spinal Muscular Atrophy ( SMA ), isifo esibangela ubuthathaka bemisipha emgogodleni? Ukuba kunjalo, ugqirha wakho usenokuba unikile iyeza elibizwa ngokuba yiRisdiplam. Eli liyeza elilulwelo olisebenzisayo. Ngoko ke, namhlanje siza kuthetha ngeRisdiplam (igama lophawu: i-Evrysdi), indlela yokuyisebenzisa, kunye noko inokukwenza, ngendlela elula necacileyo.
Kalula nje, loluphi uhlobo lonyango olu?
I-Risdiplam liyeza elisetyenziselwa ukunyanga izigulana ezinemeko ebizwa ngokuba yi -Spinal Muscular Atrophy (SMA) . Linceda ekulawuleni ubuthathaka obuhamba kancinci kancinci bemisipha yomzimba ngenxa ye-SMA.
Eyona nto ibalulekileyo kukuba oku akuyonyango lwesi sifo, kodwa kunceda ukulawula iimpawu kunye nokuphucula umgangatho wobomi bomguli.
Oogqirha banokukunika eli yeza nakwezinye iimeko, ngoko ke ukuba unemibuzo, buza ugqirha wakho ngalo.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba usebenzise iyeza
Ngaphambi kokuba uqale eli yeza, ngokuqinisekileyo kufuneka wazise ugqirha wakho ngezi zibakala, kuba zibaluleke kakhulu kukhuseleko lwakho.
- Sixelele ukuba une-allergy kwiRisdiplam okanye naliphi na elinye iyeza, ukutya, okanye idayi .
- Ukuba ukhulelwe, okanye uceba ukuba nomntwana kungekudala, qiniseka ukuba uyayikhankanya loo nto.
- Ukuba ungumama oncancisayo, yazisa ugqirha wakho ngale nto.
Ngokusekelwe kolu lwazi, ugqirha wakho uya kugqiba ukuba eli yeza lifanelekile kuwe okanye akunjalo.
Ndingayisebenzisa njani kanye kanye le yeza?
Ekubeni eli liyeza elingamanzi, kufuneka ulumke kancinci xa ulisebenzisa. Uza kufumana iziphumo ezilungileyo kuphela ukuba ulisebenzisa ngokufanelekileyo.
- Olu lulwelo oluselwa ngomlomo. Sela idosi njengoko ugqirha wakho ekuyalele.
- Ukuze ulinganise iyeza, sebenzisa kuphela isirinji ekhethekileyo yomlomo enikiweyo kunye neyeza . Musa ukusebenzisa izinto ezifana neitisipuni okanye iikomityi zesiraphu ezivela ekhitshini.
- Emva kokutsala isixa seyeza kwisirinji, kufuneka sinikwe isigulana kwimizuzu emi-5 .
- Khawucinge ukuba uthathe iyeza walifaka kwisirinji waza waya kwenza enye into, kwathatha imizuzu engaphezu kwemi-5. Ukuba oko kuyenzeka , yilahle loo dosi yeyeza uze ulungiselele idosi entsha . Musa ukunika endala.
- Soloko usela eli yeza emva kokutya .
- Sela amanzi emva kokusela iyeza.
- Ziqhelise ukusela amayeza akho malunga nexesha elifanayo yonke imihla. Thatha kanye njengoko ugqirha wakho ekuxelele.
- Musa ukuyeka ukuthatha eli yeza ngequbuliso ngaphandle kwengcebiso kagqirha wakho.
- Musa ukuvumela eli yeza lingene eluswini lwakho okanye emehlweni akho. Ukuba ulingene eluswini lwakho ngempazamo, hlamba loo ndawo kakuhle ngesepha namanzi. Ukuba lingene emehlweni akho, hlambulula amehlo akho kakuhle ngamanzi.
- Eli yeza ngamanye amaxesha linikwa neentsana ezisandul’ ukuzalwa, kodwa kuphela phantsi kweliso elingqongqo kakhulu lezonyango.
| Ukuba uphoswa yidosi okanye uthatha kakhulu | |
|---|---|
| Ukuba uphoswe yidosi | Ukuba uyakhumbula zingadlulanga iiyure ezi-6 emva kokuba uqhele ukusela ipilisi yakho, yisele kwangoko. Kodwa ukuba kudlule iiyure ezingaphezu kwezi-6 , yiyeke loo dosi ngokupheleleyo uze uthathe idosi yakho elandelayo ngexesha eliqhelekileyo. Ungaze uthathe iidosi ezimbini ngaxeshanye. |
| Umthamo ogqithisileyo | Ukuba ucinga ukuba uthathe amayeza amaninzi kakhulu, fowunela iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko. Okanye yiya kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane. |
Izinto ekufuneka uzilumkele ngakumbi xa usebenzisa amayeza
Ngelixa usebenzisa eli yeza, qaphela la manqaku ukuze ukhuseleke wena kunye nosapho lwakho.
Amanye amayeza
Ukuba usela amayeza eswekile, anjenge- metformin , xelela ugqirha wakho . Kwakhona, nika ugqirha wakho uluhlu olupheleleyo lwawo onke amanye amayeza owasebenzisayo (kuquka amayeza ezinye izifo, iivithamini, amayeza esintu, kunye neemveliso zezityalo). Kwakhona xelela ugqirha wakho ukuba utshaya okanye usela utywala, njengoko ezinye izinto zinokuchaphazela eli yeza.
Ukukhulelwa nokuzala umntwana
Oku kubaluleke kakhulu. Nceda unikele ingqalelo ekhethekileyo koku.
- Kwabasetyhini: Ngethuba bethatha eli yeza kwaye emva kwenyanga enye beyeke ukusebenzisa eli yezaKuphephe ukukhulelwa. Eli yeza linokubangela ingozi enkulu kusana olungekazalwa. Ukuba ucinga ukuba ukhulelwe, xelela ugqirha wakho ngoko nangoko.
- Kumadoda: Eli yeza lisenokunciphisa inani lamadlozi kwamanye amadoda, nto leyo enokwenza kube nzima ukuba nabantwana. Ukuba unemibuzo malunga nokuzala kwakho, thetha nogqirha wakho.
Zithini iziphumo ebezingalindelekanga ezinokubakho zeyeza?
Njengazo zonke iziyobisi, iRisdiplam inokubangela ezinye iziphumo ebezingalindelekanga, nangona ingenguye wonke umntu ozifumanayo.
| Iintlobo zeziphumo ebezingalindelekanga | |
|---|---|
| Iziphumo ebezingalindelekanga ekufuneka zixelwe kugqirha ngoko nangoko | |
| Iimpendulo ze-allergy | Iimpawu ezinje ngokurhawuzelela kwesikhumba, ukurhawuzelela, ukurhawuzelela, ukudumba kobuso, imilebe, okanye ulwimi. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Iingxaki zenkqubo yokugaya ukutya | Ukuqhinwa, urhudo, ukuhlanza. |
| Ezinye iimpawu eziqhelekileyo | Ukukhwehlela, umkhuhlane, izilonda zomlomo, umphimbo obuhlungu. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ubona nantoni na engaqhelekanga ukongeza kwezi, thetha nogqirha wakho ngayo.
Ungayigcina njani iyeza?
Ukuze kugcinwe umgangatho weyeza, kufuneka ligcinwe kakuhle.
- Yigcine kwindawo ekhuselekileyo kude nabantwana .
- Gcina iyeza efrijini . Kodwa ungalifaki efrijini . Musa ukulivumela ukuba liqine.
- Iyeza lifikile.Yigcine kwibhotile yokuqala.
- Emva kweentsuku ezingama-64 zokuvula ibhotile, lahla naliphi na iyeza eliseleyo. Musa ukulisebenzisa.
Eli phepha lolwazi lisisishwankathelo nje kuphela. Ukuba unemibuzo engaphezulu malunga nale yeza, nceda uzive ukhululekile ukuyixoxa nogqirha wakho.
Umyalezo Wokuya Ekhaya
- I-Risdiplam lunyango lwe-SMA, kodwa ayilonyango lwesifo.
- Sebenzisa kuphela isirinji ekhethekileyo enikiweyo ukulinganisa iyeza, uze ulifake kwimizuzu emi-5 emva kokulikhupha.
- Soloko usela iyeza emva kokutya.
- Kuphephe ukuyeka amayeza ngaphandle kwengcebiso kagqirha wakho.
- Kuphephe ukukhulelwa ngelixa usebenzisa amayeza kwaye emva kwenyanga enye emva kokuba uyekile. Amadoda kufuneka athethe nogqirha wawo malunga nokuzala kwawo.
- Gcina iyeza efrijini, ulivule, uze ulilahle zingadlulanga iintsuku ezingama-64.
- Ukuba uneengxaki okanye amathandabuzo, ungaze ungathandabuzi ukuthetha nogqirha wakho.
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