Njengomzali, ndiyaqonda ukuba intliziyo yakho ibuhlungu kangakanani xa ugqirha ekuxelela ukuba umntwana wakho unesifo sokuwohloka kwemisipha yomqolo, okanye into esiyaziyo sonke njenge-'Spinal Muscular Atrophy' (SMA). Kodwa ngokuhambela phambili kwesayensi yezonyango, kuye kwavela unyango olutsha noluthembisayo oluza kujongana nezi meko. Namhlanje sithetha ngesinye seziyobisi ezikhethekileyo kakhulu, zanamhlanje. Elo liyeza elibizwa ngokuba yi-Onasemnogene Abeparvovec.
Kalula nje, yintoni le Onasemnogene Abeparvovec?
Eli ligama elintsonkothileyo, kodwa masiligcine lilula. Usenokuba ukhe weva ngeli yeza elibizwa ngokuba yi-`Zolgensma`. Eli asilo pilisi okanye ikhaphu eqhelekileyo. Eli liyeza lonyango lwezakhi zofuzo .
Khawucinge nje, yonke imisebenzi emzimbeni wethu ilawulwa ziijini zethu. Njengenkqubo yekhompyutha. Kwi-SMA, kukho isiphene kwijini esenza iproteni ebalulekileyo ekusebenzeni kwezihlunu. Ngoko ke, into eyenziwa lolu nyango lwe-Onasemnogene Abeparvovec kukufaka ikopi yejini ephilileyo emzimbeni womntwana endaweni yejini enesiphene. Le jini ephilileyo ithwalwa iye kwiiseli zemithambo-luvo zomzimba ngoncedo lwentsholongwane eguqulweyo engenabungozi (i-adeno-associated virus).
Into ebalulekileyo kukuba olu asilonyango oluya kuyinyanga ngokupheleleyo i-SMA. Nangona kunjalo, lunokunceda ekuthinteleni isifo ukuba singaqhubeki kwaye luncede izihlunu zomntwana ukuba zisebenze kwaye zikhule zomelele.
Lunikwa njani olu nyango?
Eli yeza linikwa esibhedlele, phantsi kweliso elipheleleyo loogqirha abaziingcali kunye nabasebenzi abangongikazi. Olu lunyango lokufakwa kwe-infusion . Njengesisombululo se-saline, eli yeza linikwa kancinci emzimbeni kangangeyure. Olu nyango ludla ngokunikwa kube kanye ebomini.
Olu nyango lunokunikwa iintsana ezisandul’ ukuzalwa kunye nabantwana abancinci. Iqela lezonyango eliyingcali elihlola umntwana liza kugqiba ukuba olu nyango lufanelekile na kumntwana wakho okanye akunjalo. Ngoko ungakhathazeki ngalo.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba ufumane unyango
Ngenxa yokuba olu nyango luphucuke kakhulu, kubaluleke kakhulu ukwazisa iqela lezonyango ngazo zonke iinkcukacha malunga nempilo yomntwana wakho ngaphambi kokuba uqale unyango. Qiniseka ukuba ubaxelela ngezi zinto ngokukodwa.
- Ukuba umntwana unesifo sentliziyo .
- Ukuba ukhe waxela ngaphambili ukuba kukho isifo sesibindi okanye utshintsho kwi-enzymes zesibindi.
- EgaziniUkuba unesifo segazi esifana nokubalwa kweeplatelet ezisezantsi.
- Ukuba ukhe waba ne -allergy kule mithi okanye nakweyiphi na enye iyeza okanye ukutya.
- Ukuba umama ukhulelwe, ezama ukukhulelwa, okanye encancisa.
Ukubonelela ngolu lwazi ngokuchanekileyo kubaluleke kakhulu kukhuseleko lomntwana.
Zithini iziphumo ebezingalindelekanga zonyango?
Njengalo naliphi na iyeza, olu nyango lunokubangela iziphumo ebezingalindelekanga. Ezinye ziqhelekile, kodwa kukho izinto ekufuneka sizilumkele kakhulu. Masizichaze ngokucacileyo.
| Imiphumela | Inkcazo kunye nento omawuyenze |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha ngoko nangoko | |
| Iimpawu Zokwenzakala Kwesibindi | Le yeyona miphumo mibi ibalulekileyo nexhaphakileyo . Lumka kwiimpawu ezinje ngokutyheli kwamehlo okanye ulusu (okufana ne-jaundice), umchamo otyheli/omdaka omnyama, indle emnyama, iintlungu kwicala eliphezulu lasekunene lesisu, isicaphucaphu, ukuphelelwa ngumdla wokutya, kunye nokudinwa kakhulu. Ukuba ubona nayiphi na kwezi , xelela ugqirha wakho ngoko nangoko . |
| Iimpendulo ze-Allergic | Ukuba ufumana iimpawu ezifana nokurhawuzelela eluswini, ukurhawuzelela, ukudumba kobuso, imilebe, okanye ulwimi, okanye ubunzima bokuphefumla, yingxamiseko leyo. Xelela ugqirha wakho ngoko nangoko. |
| Ukopha okungaqhelekanga okanye ukukrweleka | Ngenxa yokuncipha kweeplatelets, ukopha kusenokungayeki nokuba kukho inxeba elincinci, kwaye ukukrweleka kungabonakala phantsi kolusu. Yazisa ugqirha wakho ngale nto. |
| Iimpawu zosulelo | Ukuba uqalisa ukuba nomkhuhlane ngaphandle kwesizathu, ukubanda, umphimbo obuhlungu, okanye ukukhwehlela, xelela ugqirha wakho ngaloo nto. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha | |
| Ukuhlanza | Umntwana wakho usenokuhlanza emva konyango. Oku kudla ngokuphela emva kweentsuku ezimbalwa. Nangona kunjalo, ukuba kuyaqhubeka okanye ukuba umntwana wakho unengxaki, xelela ugqirha wakho. |
Kuthekani ukuba ndifumana i-overdose?
Ekubeni eli yeza lisetyenziswa phantsi kweliso likagqirha esibhedlele, amathuba okuba lisetyenziswe ngokugqithisileyo anciphile. Nangona kunjalo, ukuba ukrokrela ukuba oku kwenzekile, kufuneka wazise iYunithi yoNyango oluNgxamisekileyo (i-ETU) yesibhedlele ngoko nangoko. Ungatsalela umnxeba iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo ukuze ufumane ingcebiso ukuba kuyimfuneko.
Izinto ekufuneka ziqwalaselwe ngexesha nasemva konyango
Uvavanyo lwegazi
Ngaphambi nasemva konyango, umntwana wakho kuya kufuneka enziwe uvavanyo lwegazi rhoqo ukuze kujongwe ukusebenza kwesibindi sakhe kunye namanqanaba eeplatelet kangangexesha elithile. Oku kungenxa yokhuseleko lomntwana wakho, ngoko ke kubaluleke kakhulu ukuba olu vavanyo lwenziwe kanye ngemihla ecwangcisiweyo njengoko kuyalelwe ngugqirha wakho.
Ukuphathwa kolwelo lomzimba kunye nenkunkuma
Eli linqaku elibaluleke kakhulu abantu abaninzi abangalinakiyo. Emva konyango, iinxalenye zale mithi (intsholongwane eguquliweyo) zinokuphuma kwindle nasemchameni womntwana kangangenyanga nangaphezulu. Ke ngoko, amalungu osapho kufuneka alumke ngakumbi xa etshintsha kwaye ecoca iinabukeni zomntwana.
- Nxiba iiglavu ngalo lonke ixesha utshintsha inabukeni.
- Beka inabukeni esetyenzisiweyo kwingxowa yeplastiki evalwe kakuhle uze uyilahle kwisitya senkunkuma esahlukileyo.
- Emva kokutshintsha inabukeni, hlamba izandla zakho kakuhle ngesepha.
- Ukuba impahla okanye izinto zokulala zomntwana wakho zingcoliswa lindle okanye ngumchamo, zihlambe zodwa emanzini ashushu.
Musa ukukhathazeka ngale nto. Ngaphambi kokuba uphume esibhedlele uye ekhaya, iqela lezonyango liza kukunika imiyalelo ecacileyo yendlela yokwenza ezi zinto.
Umyalezo Wokuya Ekhaya
- I-Onasemnogene Abeparvovec (Zolgensma) lunyango oluthile lwezakhi zofuzo lwe-Spinal Muscular Atrophy (SMA), olunikwa ngemithambo yegazi kanye ebomini.
- Nangona oku kungayinyangi ngokupheleleyo le sifo, kunceda kakhulu ekulawuleni ukuqhubela phambili kwale sifo nokuphucula umgangatho wobomi bomntwana.
- Kubalulekile ukuxelela ugqirha ngembali epheleleyo yempilo yomntwana (ingakumbi iingxaki zesibindi, intliziyo, kunye negazi) ngaphambi kokuba anyangwe.
- Lumka kakhulu malunga neempawu zokonakala kwesibindi (ukutyheli kolusu/amehlo, umchamo omnyama) emva konyango. Ukuba ubona naziphi na iimpawu ezinjalo, yazisa ugqirha wakho ngoko nangoko.
- Kubaluleke kakhulu ukulandela iingcebiso zonyango xa uphatha iinabukeni kunye nenkunkuma yomntwana kangangeenyanga eziliqela emva konyango.
- Ukuba unenkxalabo malunga nolu nyango, ungaze uqikelele, kodwa buza ugqirha okanye iqela lezonyango elinyanga umntwana wakho.
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