Ukuba kukho umntu kusapho lwakho, mhlawumbi umntwana wakho, onesifo esibizwa ngokuba yiDuchenne muscular dystrophy (DMD), mhlawumbi uhlala ufuna unyango lwaso. Esi sisifo semfuza esiye siwenze buthathaka kancinci kancinci amalungu omzimba. Ngoko ke, unyango olutsha lwaso lubizwa ngokuba yiGolodirsen. Kweli nqaku, siza kuthetha ngale chiza ngendlela elula onokuyiqonda.
Lithini eli yeza libizwa ngokuba yiGolodirsen?
Ngamafutshane, eli liyeza elisetyenziselwa ukunyanga iDuchenne Muscular Dystrophy (DMD). Ngoku makhe sibone ukuba lisebenza njani.
Khawucinge ukuba izihlunu zomzimba wethu zifana nodonga. Izitena ezikulolu donga zibanjwe yiproteni ebizwa ngokuba yi-'dystrophin', njenge-mortar. Kumntu one-DMD, le mortar, oko kukuthi, iproteni ye-dystrophin, ayiveliswa. Ngoko ke udonga olubizwa ngokuba yi-muscle alunamandla, kwaye luba buthathaka kancinci kancinci.
Iyeza iGolodirsen lisebenza ngokunceda umzimba ukuba wenze le protein ye-dystrophin. Oku kunceda ukonyusa amandla emisipha nokulawula ukuqhubela phambili kwesi sifo.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uthathe amayeza
Ngaphambi kokuba uqale olu nyango, kubaluleke kakhulu ukunika ugqirha inkcazo epheleleyo ngemeko yakho okanye yomntwana wakho. Qiniseka ukuba ukhankanya ezi zinto ngokukodwa.
- Isifo sezintso: Ukuba unesifo esinxulumene nezintso, ngokuqinisekileyo kufuneka usixelele ngaso.
- Ii-Allergy: Xelela ugqirha wakho ukuba unayo nayiphi na i-allergies kwiGolodirsan okanye naliphi na elinye iyeza, ukutya, okanye idayi.
- Ukuba ukhulelwe okanye uzama ukukhulelwa: Ukuba ukhulelwe okanye uceba ukuba nomntwana, xelela ugqirha wakho.
- Ukuba ungumama oncancisayo: Ukuba ungumama oncancisayo, kufuneka ukhankanye loo nto.
Ngokusekelwe kolu lwazi, ugqirha uya kugqiba ukuba eli yeza lifanelekile na kuwe okanye akunjalo.
Ulisebenzisa njani eli yeza?
Eli asiloyeza onokulithatha uye nalo ekhaya ulisebenzise.
Eli yeza linikwa njengenaliti emthanjeni . Linikwa kuphela ngugqirha okanye umongikazi oqeqeshiweyo, esibhedlele okanye eklinikhi .
Ngoko ke akufuneki ukhathazeke ngedosi okanye indlela enikwa ngayo. Iqela lezonyango liza kujongana nezo zinto.
Ngaba eli yeza linokunikwa abantwana?
Ewe, eli yeza linikwa nabantwana abane-DMD. Nangona kunjalo, ugqirha wakho uza kukuchazela amanyathelo okhuseleko kunye nezinto ezikhethekileyo ekufuneka uziqwalasele.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Oku kunikwa esibhedlele, ngoko ke amathuba okuba oku kwenzeke mancinci kakhulu. Nangona kunjalo, ukuba ucinga ukuba uthathe amayeza amaninzi kakhulu, fowunela iZiko loLwazi lweeTyhefu zeSizwe kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko, okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Kubalulekile: Eli yeza lelomguli kuphela. Ungaze ulinike omnye umntu eli yeza.
Wenza ntoni ukuba uphoswe yidosi yeyeza?
Eli liyeza ekufuneka lithathwe rhoqo, ngokweshedyuli emiselweyo. Ngoko ke, kubaluleke kakhulu ukulandela imihla namaxesha anikwa ngugqirha wakho ngokuchanekileyo. Ukuba ngesizathu esithile awukwazi ukuya ngomhla omiselweyo, fowunela ugqirha wakho okanye ikliniki ngokukhawuleza ubazise. Baza kukuxelela into omawuyenze ngokulandelayo. Musa ukulibazisa iyeza lakho nangasiphi na isizathu.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengayo nayiphi na iyeza, ugonyo lweGolodiran lunokubangela ezinye iziphumo ebezingalindelekanga. Kodwa ayinguye wonke umntu ozifumanayo. Masizihlukanise zibe ngamacandelo amabini.
| Iziphumo ebezingalindelekanga ezinokubakho zeGolodirsen | |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ezifuna unyango olukhawulezileyo | |
| Iimpendulo ze-allergy | Iimpawu ezinje ngokurhawuzelela kwesikhumba, ukurhawuzelela, ukuba bomvu, ukudumba kobuso, imilebe, ulwimi, okanye umqala. |
| Ukulimala kwezintso | Ukuncipha kokuphuma komchamo, ukudumba kwamaqatha, izandla, okanye iinyawo. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Intloko ebuhlungu | Intloko ebuhlungu rhoqo. |
| Ifiva | Ukuziva ushushu. |
| Ukukhwehlela kunye nokubanda | Ukukhwehlela, impumlo evuzayo, okanye impumlo exineneyo. |
| Iingxaki zenkqubo yokugaya ukutya | Intlungu yesisu, isicaphucaphu, ukuhlanza. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ufumana into eyahlukileyo, thetha nogqirha wakho ngayo.
Umyalezo Wokuya Ekhaya
- IGolodirsen sisitofu esikhethekileyo esisetyenziselwa ukunyanga iDuchenne muscular dystrophy (DMD).
- Oku kunceda umzimba ukuba wenze iproteni ebizwa ngokuba yi-dystrophin, eyimfuneko kwimisipha.
- Eli yeza linikwa ngemithambo esibhedlele okanye ekliniki. Ngoko ke, awuyi kuvunyelwa ukuba ulithathe uliyise ekhaya.
- Ngaphambi kokuba uqale unyango, xelela ugqirha wakho ngazo zonke iimeko zakho zempilo, ingakumbi isifo sezintso kunye nee-allergies.
- Ukuba ufumana naziphi na iimpawu ze-allergy ezifana nokurhawuzelela, ukudumba, okanye iimpawu ezibonisa umonakalo wezintso, njengokuncipha komchamo, yazisa ugqirha wakho ngoko nangoko .
- Qiniseka ukuba uya kugqirha ngeentsuku namaxesha akunika wona uze ufumane unyango. Musa ukulibazisa amayeza akho.
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