Ukuba umntwana wakho uneDuchenne Muscular Dystrophy (DMD), kusenokwenzeka ukuba ukhe weva ngegama elithi Casimersen. Ekubeni liyeza elitsha, usenokuba unemibuzo emininzi ngalo. Loluphi uhlobo lweyeza, lisebenza njani, kwaye zeziphi izilumkiso ekufuneka uzithathe xa ulinika umntwana wakho? Ungakhathazeki, siza kuthetha ngazo zonke ezo zinto ngokulula nangokucacileyo namhlanje.
Yintoni kanye kanye iCasimersen?
Ngamafutshane, iCasimersen liyeza elinikwa abantwana abaneDuchenne Muscular Dystrophy (DMD) kunye notshintsho oluthile lwezakhi zofuzo . Ayilonyango lwesi sifo, kodwa inceda ukulawula ubuthathaka bemisipha obubangelwa sisifo.
Ngoku masibone ukuba oku kusebenza njani. Khawucinge ukuba izihlunu emzimbeni wethu zifana nodonga olwenziwe ngezitena. Umzimba wethu uneproteni efana nodaka oludibanisa ezi zitena kunye kwaye luzigcine zomelele. Ibizwa ngokuba yi -dystrophin . Kubantwana abane-DMD, umzimba awuvelisi le protein ye-dystrophin. Ngenxa yoko, udonga olubizwa ngokuba yizihlunu luyathamba kancinci kancinci luze luqale ukuwohloka.
Into eyenziwa yiCasimersen vaccine kukunceda umzimba wenze iproteni yeDystrophin esebenza kancinci , nokuba ayinakukwazi ukwenza iproteni epheleleyo yeDystrophin. Kufana nokuzama ukugcina udonga luqinile ngokongeza enye into engasetyenziswa endaweni yeplasta engcono, nokuba ayilunganga. Oku kunokuthoba izinga lobuthathaka bemisipha.
Into ebalulekileyo kukuba eli yeza alifanelekanga kubo bonke abantwana abane-DMD. Lifanele kuphela abantwana abane-genetic mutation ethile. Ngugqirha wakho kuphela onokugqiba ukuba olu nyango lufanelekile na kumntwana wakho.
Izinto ekufuneka uzazise ugqirha ngaphambi kokuba umntwana anikwe amayeza
Ngaphambi kokuba umntwana wakho aqalise unyango lweCasimersen, kubalulekile ukuxelela ugqirha wakho olu lwazi lulandelayo. Musa ukuzifihla ezi zinto, kuba zibaluleke kakhulu kukhuseleko lomntwana wakho.
- Isifo sezintso: Ukuba umntwana wakho uneengxaki zezintso, qiniseka ukuba umxelele ngazo.
- Ii-Allergy: Xelela umntwana wakho ukuba ukhe waba ne-allergy kwiCasimersen okanye naliphi na elinye iyeza, ukutya, iidayi, okanye izithinteli.
- Ukukhulelwa okanye ukuzama ukukhulelwa: Ukuba intombazana encinci ifumana olu nyango, yazisa ugqirha ukuba ikhulelwe okanye izama ukukhulelwa.
- Ukuncancisa: Kufuneka kukhankanywe nokuba umntu ofumana unyango ngumama oncancisayo.
Ungayinika njani iyeza? Kwaye yintoni omawuyilumkele
Eli yeza linikwa njengenaliti emthanjeni . Le asinto onokuyenza ekhaya. Linikwa ngabasebenzi bezonyango abaqeqeshiweyo esibhedlele okanye eklinikhi .
Kuthekani ukuba uphoswe yidosi yeyeza?
Kubaluleke kakhulu ukufumana isitofu ngomhla omiselweyo wonyango. Ngoko ke, musa ukulibazisa imihla yokubonana nogqirha. Ukuba ngesizathu esithile awukwazi ukuya ngomhla omiselweyo, fowunela ugqirha wakho ngoko nangoko umxelele ngale nto uze ubeke umhla wotyelelo olulandelayo.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Oku kunikwa esibhedlele, ngoko ke amathuba okuba oku kwenzeke mancinci kakhulu. Nangona kunjalo, ukuba ucinga ukuba usenokuba uthathe amayeza amaninzi kakhulu, yazisa abasebenzi besibhedlele ngoko nangoko, okanye utsalele umnxeba iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo . Okanye yiya kwiYunithi yoNyango oluNgxamisekileyo (ETU) ekufutshane.
Zithini iziphumo ebezingalindelekanga ezinokubakho zokusebenzisa eli yeza?
Njengayo nayiphi na iyeza, iCasimersen inokubangela ezinye iziphumo ebezingalindelekanga. Oogqirha baya kuyijonga imeko yomntwana wakho ngononophelo kulo lonke ixesha lonyango. Nangona kunjalo, kubalulekile ukuba wena njengomzali ukwazi oku.
Nika ingqalelo kwiimpawu ezikwitheyibhile engezantsi.
| Imiphumela | Inkcazo kunye nento omawuyenze |
|---|---|
| 🚨 Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha wakho ngoko nangoko | |
| Iimpendulo ze-allergy | Ukuba ufumana iimpawu ezingalindelekanga ezifana nokurhawuzelela eluswini, ukurhawuzelela, ukudumba kobuso, imilebe, okanye ulwimi, oko kusenokuba yimpendulo enzulu ye-allergy. Xela ngoko nangoko. |
| Ukulimala kwezintso | Ukuba ubona ubunzima bokuchama okanye utshintsho kubungakanani bomchamo owudlulayo (ukwehla okukhulu okanye ukungabikho komchamo konke konke), xelela ugqirha wakho ngoko nangoko. |
| 🙂 Ukuba ziyaqhubeka okanye ziyakukhathaza, kufuneka uxelele ugqirha wakho. Iziphumo ebezingalindelekanga eziqhelekileyo | |
| Ukukhwehlela kunye nomphimbo obuhlungu | Ukukhohlela okuqhelekileyo okanye umphimbo obuhlungu. |
| Ifiva | Ukuziva ushushu. |
| Intloko ebuhlungu | Intloko ebuhlungu. |
| Intlungu yamalungu | Intlungu yomzimba namalungu. |
Ngaba kukho iingxaki ngamanye amayeza?
Ngokweenkcukacha ezikhoyo ngoku, iCasimersen ayikabikho ingxelo yokuba ibangela naluphi na unxibelelwano olukhethekileyo nezinye iziyobisi.
Kodwa ungacingi ukuba kunjalo. Nika ugqirha wakho uluhlu olupheleleyo lwamayeza onke asetyenziswa ngumntwana wakho (kuquka iivithamini, amayeza esintu, kunye nezongezo) . Yeyona ndlela ilungileyo yokugcina umntwana wakho ekhuselekile.
Umyalezo Wokuya Ekhaya
- I-Casimersen liyeza elinceda ekuveliseni uhlobo olungasebenzi kakuhle lweprotheyini ye-Dystrophin, engekhoyo kwi-Duchenne Muscular Dystrophy (DMD).
- Oku akuyonyango lwesifo, kodwa kunceda ukulawula iimpawu.
- Olu nyango lufanele kuphela abantwana abane-genetic change ethile, kwaye ugqirha wakho uya kugqiba.
- Le yinaliti efakwa esibhedlele ngemithambo. Ayigcinwa okanye inikwe ekhaya.
- Ngaphambi kokuba umnike iyeza, xelela ugqirha lonke ulwazi lwempilo yomntwana wakho, olufana nesifo sezintso kunye ne-allergies.
- Funa uncedo lwezonyango ngokukhawuleza ukuba ubona ukuba kukho i-allergy enkulu (ukudumba kolusu/ubuso) okanye utshintsho kwindlela ochama ngayo.
- Zive ukhululekile ukuthetha nogqirha wakho ngayo nayiphi na imibuzo okanye iinkxalabo onokuba nazo.
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