Ngaba umntwana wakho ufunyenwe ene-Duchenne Muscular Dystrophy (DMD)? Kwaye ngaba ukhe waxelelwa ngeyeza i-Eteplirsen njengonyango olukhethekileyo lwalo? Kuqhelekile ukuba uzive usoyika kancinci, ukhathazekile, kwaye unqikaza xa usiva igama elinje, ingakumbi xa lichaphazela umntwana wakho. Kodwa ungoyiki. Ulwazi luluqilima lwethu olukhulu. Namhlanje, masithethe ngendlela elula neyobuhlobo malunga nokuba i-Eteplirsen yintoni, yintoni eyenzayo, kunye noko kufuneka ukwazi ngayo njengomzali.
Luhlobo luni lweyeza ngokwenene i-Eteplirsen?
Ngamafutshane, i-Eteplirsen liyeza elikhethekileyo elisetyenziselwa ukunyanga imeko ebizwa ngokuba yiDuchenne Muscular Dystrophy (DMD) . Nangona kunjalo, ayinikwa bonke abantwana abane-DMD. Inikwa kuphela abantwana abane -gene mutation ethile .
Cinga nje, izihlunu zomzimba wethu zifana neendonga zesakhiwo. Ezi ndonga zifuna isamente ukuze zihlale zomelele. Ngokufanayo, ukuze izihlunu zethu zihlale zomelele kwaye ziphilile, sifuna iproteni ekhethekileyo ebizwa ngokuba yi-dystrophin . Abantwana abane-DMD banesiphako ekuvelisweni kwale protein ye-dystrophin.
Oko kwenziwa liyeza i-Eteplirsen kukunceda iproteni ye-dystrophin, ekhutshazwe sisiphene semfuza, ukuba isebenze kwakhona, ngandlela ithile. Oko kukuthi, eli yeza linceda izihlunu zenze ezinye zeproteni ye-dystrophin eziyidingayo.
Okubalulekileyo kukuba, i-Eteplirsen ayilonyango lwe-DMD. Nangona kunjalo, inganciphisa isantya sobuthathaka bemisipha obubangelwa sisifo, nto leyo enika umntwana isiqabu.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale unyango
Ngaphambi kokuba umntwana wakho aqale olu nyango, kubalulekile ukuba umchazele ngokucacileyo ugqirha wakho la maqiniso. Musa ukufihla nantoni na, kuba lonke olu lwazi lubalulekile kukhuseleko lomntwana.
- Ii-Allergies: Qiniseka ukuba uyamxelela umntwana wakho ukuba une-allergies kwi-Eteplirsen okanye nakweyiphi na enye iyeza, ukutya, iidayi, okanye izithinteli.
- Ukukhulelwa okanye ukuzama ukukhulelwa: Oku akunakusebenza kubantwana, njengoko eli yeza lidla ngokunikezelwa kubantwana. Nangona kunjalo, ukuba umntu oselula unyangwa nangasiphi na isizathu, ugqirha kufuneka aziswe ukuba ukhulelwe okanye uzama ukukhulelwa.
- Ukuncancisa: Ukuba umntu ofumana unyango ngumama oncancisayo, ugqirha naye kufuneka aziswe.
Umnika njani umntwana eli yeza?
Olu asilonyango lwasekhaya. I-Eteplirsen yinaliti efakwa emthanjeni. Olu nyango lunikezelwa esibhedlele okanye eklinikhi, phantsi kweliso elipheleleyo likagqirha okanye abasebenzi abaqeqeshiweyo bomongikazi. Ngoko ke akukho mfuneko yokukhathazeka ngokhuseleko lomntwana.
Olu gonyo ludla ngokunikezelwa kube kanye ngeveki. Kubaluleke kakhulu ukulandela imihla namaxesha achanekileyo onyango.
Kuthekani ukuba ndiphoswa lusuku lokuthatha amayeza am?
Ukuze ufumane okuninzi kolu nyango, kubalulekile ukuba ugonyo lufumaneke ngexesha elifanelekileyo. Ukuba ngesizathu esithile awukwazi ukumsa umntwana wakho esibhedlele ngomhla omiselweyo, fowunela ugqirha wakho okanye ikliniki ngokukhawuleza kwaye umxelele. Baza kukucebisa ngento omawuyenze ngokulandelayo.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Oku kubonelelwa esibhedlele, ngoko ke amathuba okuba oku kwenzeke phantse angabikho. Nangona kunjalo, xa kukho imeko engxamisekileyo, ukuba ukrokrela ukuba ugqithisile, fowunela iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke ngoko nangoko. Okanye umse umntwana kwiSebe leeNgxamiseko lesibhedlele esikufutshane (ETU) .
Izinto ekufuneka ziqwalaselwe ngexesha lonyango
Okwangoku akukho ndlela eyaziwayo yokusebenzisana nale yeza. Nangona kunjalo, ukuze ukhuseleke, nika ugqirha wakho uluhlu olupheleleyo lwawo nawaphi na amanye amayeza (kuquka iivithamini, iPanadol), amayeza esintu, iimveliso zezityalo okanye izongezo ezisetyenziswa ngumntwana wakho.
Ngalo lonke unyango, ugqirha uza kuyijonga imeko yomntwana ngononophelo olukhulu. Oku kuthetha ukuba baza kujonga rhoqo amandla emisipha yomntwana, intshukumo yakhe, kunye nempilo yakhe iyonke.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengayo nayiphi na iyeza, i-Eteplirsen inokubangela ezinye iziphumo ebezingalindelekanga. Nangona kunjalo, ayinguye wonke umntu ozifumanayo. Kubalulekile ukuzazi ezi ziphumo. Masizihlukanise zibe ziindidi ezimbini.
| Imiphumela | Inkcazo kunye nento omawuyenze |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha wakho ngoko nangoko | |
| Iimpendulo eziqatha ze-allergy |
Ukuba ubona nayiphi na kwezi, yimeko engxamisekileyo. Funa ingcebiso kagqirha ngokukhawuleza. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Ukuhlanza | Ukugabha emva kokuthatha iyeza. |
| Intloko ebuhlungu | Intloko ebuhlungu kancinci ukuya kwephakathi. |
| Ukukhwehlela | Ukukhwehlela okutsha okanye ukukhwehlela okukhoyo kube kubi ngakumbi. |
| Ukudinwa kunye nokulahlekelwa yibhalansi | Ukuba nesiyezi kunye nobunzima bokugcina ulungelelwano xa uhamba okanye umi. |
Ukuba umntwana wakho ufumana naziphi na ezinye iimpawu ezingaqhelekanga ezingakhankanywanga kolu luhlu, yazisa ugqirha wakho ngazo. Musa ukungayinaki nantoni na.
Umyalezo Wokuya Ekhaya
- I-Eteplirsen lunyango olukhethekileyo kubantwana abane-Duchenne Muscular Dystrophy (DMD) kunye notshintsho oluthile lwemfuza .
- Nangona oku kungekuko ukunyanga esi sifo, kunokunceda ukulawula iimpawu kunye nokuthomalalisa ubuthathaka bemisipha.
- Eli yeza linikwa esibhedlele ngabasebenzi bezonyango abaqeqeshiweyo njengenaliti emthanjeni, ngoko ke akukho nto inokubangela ukukhathazeka ngayo ekhaya.
- Naziphi na ii-allergies umntwana anazo okanye naziphi na ezinye iziyobisi umntwana azisebenzisayoQiniseka ukuba uxelela ugqirha wakho ngayo.
- Ukuba ufumana iimpawu ezinobungozi zokunganyamezelani komzimba ezifana nokurhawuzelela kolusu kunye nokudumba kobuso emva kokusela iyeza, funa ingcebiso kagqirha ngoko nangoko.
- Yisa umntwana wakho esibhedlele ngexesha elifanelekileyo , ungaphoswa ziintlanganiso. Ukuba uneengxaki, fowunela ugqirha ngokukhawuleza.
- Ukuba unemibuzo engaphezulu malunga nolu nyango, nceda uzive ukhululekile ukubuza ugqirha wakho ngaphandle kokuthandabuza.
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