Umele ukuba wothuka xa ugqirha ekuxelela ukuba umntwana wakho unesifo esibizwa ngokuba yi-Spinal Muscular Atrophy (SMA). Sisifundo esibucayi kakhulu. Kodwa ngoku isayensi yezonyango ihambele phambili kakhulu. Kufunyenwe iindlela ezintsha nezisebenzayo zokunyanga ezi meko. I-Onasemnogene Abeparvovec yenye yeendlela eziphambili kakhulu zonyango lwezakhi zofuzo, olusebenza kube kanye. Iyaziwa kakhulu ngegama lophawu iZolgensma. Ke namhlanje, masithethe ngale mithi, ukusebenza kwayo, izinto ekufuneka uzilumkele, kunye nemiphumo emibi ngendlela elula onokuyiqonda.
Luhlobo luni lonyango olu? Yintoni kanye kanye eyenzekayo?
Ngamafutshane, i-Onasemnogene Abeparvovec liyeza elinyanga imeko ebizwa ngokuba yi -Spinal Muscular Atrophy (SMA) . I-SMA sisifo semfuza esibangela ukuba izihlunu zomzimba wethu zibe buthathaka kancinci kancinci kwaye ziphele. Oku kubangelwa sisiphene kwi-gene evelisa iproteni ebalulekileyo ekugcineni izihlunu ziphilile.
Into eyenziwa leli yeza kukutshintsha i-gene enesiphene ngekopi ephilileyo ye-gene enokuvelisa loo protein ngokuchanekileyo. Oku kubizwa ngokuba yi -gene therapy . Xa le gene isempilweni ingena emzimbeni, iqala ukuvelisa iproteni ebalulekileyo. Oku kuyayekisa izihlunu ekubeni buthathaka ngakumbi kwaye iimpawu zingabi zimbi ziyalawuleka.
Olu lutyando olufumaneka kube kanye. Ekubeni umzimba ufumana i-gene enempilo oyifunayo ngedosi enye, akukho mfuneko yokuqhubeka nokuyifumana.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba usebenzise eli yeza
Ngenxa yokuba olu lunyango oluthile, kubaluleke kakhulu ukunika iqela lezonyango inkcazo epheleleyo yemeko yempilo yomntwana wakho. Ngaphambi kokuba uqale unyango, qiniseka ukuba uxelela ugqirha ngezi zinto ngokukodwa:
- Usulelo lwangoku: Ukuba umntwana unentsholongwane efana nomkhuhlane, umkhuhlane, okanye ukukhwehlela.
- Isifo sesibindi: Ukuba unesifo sesibindi.
- Ukuphelelwa ngamanzi emzimbeni: Ukuba kukho ukunqongophala kwamanzi emzimbeni.
- Ii-Allergies: Ukuba une-allergies kweli yeza okanye naliphi na elinye iyeza okanye ukutya.
- Ukukhulelwa okanye ukuncancisa: Olu nyango ludla ngokunikwa abantwana abancinci, ngoko ke oku akubalulekanga, kodwa kubalulekile ukukwazi oku ukuba lunikwa umntu oselula nangayiphi na indlela.
Linikwa njani eli yeza?
Olu asilonyango lwasekhaya. Lunikwa esibhedlele okanye kwikliniki ekhethekileyo, phantsi kweliso elipheleleyo leqela lezonyango eliquka oogqirha kunye nabahlengikazi.
Olu lutyando olufakwa ngemithambo yegazi. Lufakwa emthanjeni, njenge-saline, kangangexesha elingangeyure. Olu nyango lunokunikwa nakwiimveku ezisandula ukuzalwa. Nangona kunjalo, lufuna amanyathelo akhethekileyo okhuseleko kunye nokubekwa esweni rhoqo.
Yintoni omawuyenze ukuba ugqithisile?
Ekubeni oku kunikwa liqela lezonyango esibhedlele, amathuba okuba kusetyenziswe i-overdose anciphile. Nangona kunjalo, ukuba ukrokrela ukuba kukho into eyenzekileyo, yazisa iqela lezonyango ngoko nangoko. Ngaphandle koko, fowunela iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo . Okanye umse umntwana kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Izinto ekufuneka ziqwalaselwe ngexesha nasemva konyango
Emva kokufumana olu nyango, kukho izinto ezimbalwa ekufuneka uzilumkele ngakumbi.
Ukuhlolwa rhoqo kwezonyango
Emva konyango, imeko yomntwana iya kuhlolwa rhoqo ngoogqirha. Uvavanyo lwegazi lunokwenziwa rhoqo ukujonga izinto ezifana nokusebenza kwesibindi.
Ingozi yokosuleleka
Eli yeza linokuba nefuthe elithile kwinkqubo yomzimba yokuzikhusela, nto leyo eyonyusa umngcipheko wokosuleleka.
- Ukuba ufumanisa iimpawu ezinje ngomkhuhlane, ukugodola, ukukhwehlela, okanye umphimbo obuhlungu, tsalela umnxeba ugqirha wakho ngoko nangoko.
- Musa ukunika amayeza ngendlela othanda ngayo.
- Gcina umntwana wakho kude kakhulu nabantu abagulayo.
Ukuthintela ukusasazeka kolwelo lomzimba kwabanye (kubaluleke kakhulu!)
Le yeyona nto ibalulekileyo ekufuneka uyiqwalasele ngeli xesha lonyango. Emva kokuba unyango lwe-gene lunikiwe, ulwelo lomzimba womntwana (olufana namathe, umchamo, kunye nendle) lunokuba neempawu zonyango kangangenyanga . Kufuneka uthintele ezi zinto ukuba zingangeni emzimbeni womnye umntu ngengozi.
- Ukuhlamba izandla: Hlamba izandla zakho kakuhle ngesepha namanzi nanini na xa udibana nolwelo lomzimba lomntwana wakho, ingakumbi emva kokutshintsha amanabukeni.
- Sebenzisa iiglavu: Ukuba kunokwenzeka, nxiba iiglavu ezingasetyenziswa xa utshintsha inabukeni yomntwana wakho.
- Ukulahla iinapkeni kunye nenkunkuma: Beka iinapkeni zomntwana ezingcolileyo, ezimdaka ngomchamo kunye nezinye izinto kwingxowa yeplastiki evalwe kakuhle uze uzilahle kunye nenkunkuma eqhelekileyo.
Ngokulandela la manyathelo okhuseleko ngokuchanekileyo, unokuthintela amanye amalungu osapho lwakho ukuba angafumani ngengozi olu nyango lwezakhi zofuzo.
Amanye amanqaku
- Umngcipheko wokopha: Nokuba yingozi encinci inokubangela ukopha okungakumbi ngeli xesha. Ngoko sebenzisa ibrashi yamazinyo ethambileyo xa uhlamba amazinyo akho. Ukuba ubona ugqirha wamazinyo, qiniseka ukuba umxelele ukuba umntwana wakho ufumene olu nyango.
- Umngcipheko weethumba:Kukho umngcipheko omncinci kakhulu wokuba neethumba emzimbeni ngenxa yale mithi. Uninzi lwazo azinazo umhlaza (azinabungozi). Nangona kunjalo, ukuba ubona ithumba elitsha okanye iqhuma naphi na emzimbeni womntwana wakho, xelela ugqirha wakho ngoko nangoko.
Zithini iziphumo ebezingalindelekanga?
Njengakweminye imithi, olu nyango lunokuba nemiphumo emibi. Eminye iyingozi, eminye ixhaphakile. Kubalulekile ukuzazi ezi zinto.
| Imiphumela | Oko kufuneka ukwazi kunye neempawu |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha ngoko nangoko | |
| Iimpendulo ze-allergy | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe, ulwimi okanye umqala. |
| Ukulimala kwesibindi | Intlungu kwicala eliphezulu lasekunene lesisu, ukuphelelwa ngumdla wokutya, isicaphucaphu, indle ekhanyayo, umchamo otyheli okanye omdaka, ukutyheli kolusu namehlo, kunye nokudinwa okungaqhelekanga. |
| Ukutyumza okanye ukopha okungaqhelekanga | Ukuluhlaza okwesibhakabhaka okungachazekiyo kwiindawo zomzimba, ukopha kweentsini, kunye nokopha kweempumlo. |
| Usulelo | Umkhuhlane, ukubanda, ukukhohlela, umphimbo obuhlungu, amanxeba angapholiyo, iintlungu xa uchama. |
| Iimpendulo zokufakwa | Intlungu esifubeni, ubunzima bokuphefumla, isiyezi, ukuziva utyhafile. |
| Ukulimala kwezintso | Ukuchama okunciphileyo, ukudumba kwamaqatha, izandla, okanye iinyawo. |
| I-Hemolytic anemia | Ukudinwa okanye ubuthathaka obungaqhelekanga, isiyezi, intloko ebuhlungu, ubunzima bokuphefumla, umchamo omnyama, ukutyheli kolusu okanye amehlo. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Ukuhlanza | Oku kuqhelekile, kodwa ukuba kuyaqhubeka okanye kuqatha, yazisa ugqirha wakho. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukongeza, ukuba ubona nantoni na engaqhelekanga okanye eyahlukileyo ngomntwana wakho, thetha nogqirha wakho ngaloo nto.
Umyalezo Wokuya Ekhaya
- I-Onasemnogene Abeparvovec (Zolgensma) lunyango oluthile lwezakhi zofuzo oluqhutywa kube kanye kuphela kwi-Spinal Muscular Atrophy (SMA).
- Olu nyango lunikezelwa esibhedlele, phantsi kweliso elipheleleyo leqela lezonyango.
- Kubalulekile ukunika ugqirha lonke ulwazi lwempilo yomntwana ngaphambi kokuba aqalise unyango.
- Kubaluleke kakhulu ukulahla ngobunono nangokufanelekileyo ulwelo lomntwana, olufana nendle, umchamo, kunye namathe, kangangenyanga emva konyango. Oku kungenxa yokhuseleko lwamalungu osapho.
- Funa uncedo lwezonyango ngokukhawuleza ukuba ubona iimpawu zokonakala kwesibindi (ukutyheli kwamehlo/ulusu, umchamo omnyama), iimpawu zosulelo (umkhuhlane), okanye iimpembelelo ezimbi kakhulu ze-allergy.
- Zive ukhululekile ukuthetha nogqirha wakho ngayo nayiphi na imibuzo okanye iinkxalabo onokuba nazo malunga nolu nyango.
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