Ngaba kukho umntu kusapho lwakho, okanye umntu omaziyo, onesifo sokungaboni kakuhle? Ngamanye amaxesha oku kubangelwa zizifo zemfuza ezidluliselwa kwizizukulwana ngezizukulwana. Imihla ngemihla, ukubona kunokuncipha, kwaye ekugqibeleni kungabonakali ngokupheleleyo. Ngoko ke, namhlanje siza kuthetha ngonyango lwamva nje noluphambili kwisayensi yezonyango olunyanga isifo samehlo esingaqhelekanga nesizuzwe njengelifa. Igama laso yiVoretigene Neparvovec.
Kalula nje, yintoni iVoretigene Neparvovec?
Eli asiloyeza elifana neepilisi, iikhaphu, okanye amafutha esiwasebenzisa rhoqo. Eli libizwa ngokuba yiGene Therapy . Igama lophawu lwalo yiLUXTURNA .
Olu nyango lusetyenziselwa ukunyanga ukukhubazeka okuthile kokubona okuzuzwe njengelifa okuchaphazela i-retina yamehlo ethu. Ngokukodwa, lunyanga ingxaki yokubona ebangelwa sisiphene kwi-RPE65 gene emzimbeni wethu.
Ngoko ke, yintoni le ndlela yonyango lwezakhi zofuzo?
Khawucinge ukuba kukho incwadi enkulu enemiyalelo yokuba yonke into emzimbeni wethu kufuneka isebenze njani. Le ncwadi ziijini zethu. Ngamanye amaxesha, kwiphepha elinye lale ncwadi, oko kukuthi, kwijini enye, kunokubakho impazamo, impazamo. Impazamo kwijini ebizwa ngokuba yi-RPE65 yenye yezinto ezinjalo.
Olu nyango, olubizwa ngokuba yiVoretigene Neparvovec, lusebenzisa intsholongwane engenabungozi njengomthwali ukufaka ikopi echanekileyo yejini kwiiseli ezinejini engalunganga. Kufana nokutshintsha iphepha ngemiyalelo engalunganga ngephepha elitsha ngemiyalelo echanekileyo. Emva koku, iiseli zamehlo ziyakwazi ukusebenza kakuhle kwakhona, kwaye ngale ndlela, umbono olahlekileyo unokubuyiselwa kwinqanaba elithile okanye uthintele ukulahleka kombono ngakumbi.
Eli linyathelo elikhulu ngokwenene kwisayensi yezonyango. Lithemba elikhulu kuphela lokuba ngoku kukho unyango oluphumelelayo lwesifo esasinganyangeki ngaphambili.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba ufumane olu nyango
Ngenxa yokuba olu lunyango oluthile, kubalulekile ukuba ugqirha wakho azi imbali yakho yonke yempilo. Qiniseka ukuba umxelele oku kulandelayo:
- Ezinye izifo zamehlo: Nasiphi na esinye isifo samehlo okanye ingxaki yokubona osele unayo (umz. i-cataracts, i-glaucoma).
- Ii-Allergies: Nceda usixelele ukuba unayo nayiphi na i-allergies kweli yeza (i-voretigene neparvovec), naluphi na olunye unyango, ukutya, iidayi, okanye izithinteli.
- Ukukhulelwa nokuncancisa:Ukuba ukhulelwe, uzama ukukhulelwa, okanye uncancisa, qiniseka ukuba wazise ugqirha wakho.
Ulisebenzisa njani eli yeza?
Olu asilonyango lwasekhaya. Olu luhlaselo olufakwa elisweni . Oku kwenziwa ngugqirha wamehlo oqeqeshwe ngokukodwa kwindawo elawulwayo necocekileyo, njengegumbi lotyando esibhedlele. Ngoko ke akukho nto inokubangela ixhala, ukhuseleko lwakho luqinisekiswa ngokupheleleyo kangangoko.
Ngaba oku kunokunikwa abantwana abancinci?
Ewe. Olu nyango lunokunikwa abantwana abaneminyaka eli-1 ubudala, phantsi kweemeko ezifanelekileyo. Nangona kunjalo, isigqibo sokugqibela ngalo nyango senziwa ngugqirha wabantwana kunye nogqirha wamehlo ohlola umntwana wakho. Ukuba unika umntwana olu nyango, kubaluleke kakhulu ukuthetha neqela lezonyango ngalo mbandela ngokupheleleyo kwaye uchaze yonke into.
Kuza kwenzeka ntoni ukuba uthatha amayeza amaninzi kakhulu?
Ekubeni oku kubonelelwa esibhedlele, phantsi kweliso elipheleleyo loogqirha, amathuba okuba kwenzeke 'ukugqithisa' aphantsi kakhulu. Nangona kunjalo, ukuba kukho nakuphi na ukurhaneleka kokuba into enjalo yenzekile, abasebenzi besibhedlele baya kuthatha amanyathelo ngoko nangoko. Ngokwesiqhelo, kwimeko enjalo , iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo okanye iYunithi yoNyango oluNgxamisekileyo (ETU) ekufutshane iyaziswa.
Izinto ekufuneka ziqwalaselwe ngexesha nasemva konyango
Ngexesha nasemva konyango, oogqirha baya kukubeka esweni ngokusondeleyo. Ukwanoxanduva olukhulu.
Ukuba ubona naluphi na utshintsho embonweni wakho - njengokuncipha kombono, umbono ofipheleyo, amabala amnyama ahamba phambi kwamehlo akho, ukwanda kokuziva ukukhanya, okanye intlungu yamehlo okanye ukubomvu - xelela ugqirha wakho ngoko nangoko . Oku kubaluleke kakhulu.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengakwezinye iindlela zonyango, kukho iziphumo ebezingalindelekanga. Qaphela oku kulandelayo.
| Iziphumo ebezingalindelekanga ekufuneka zixelwe kugqirha ngoko nangoko | |
|---|---|
| Imiphumela | Inkcazo |
| Iimpendulo ze-allergy | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba komzimba, ingakumbi ubuso, imilebe okanye ulwimi. |
| Ukopha okuphuma elisweni | Ukopha ngaphakathi okanye ngaphandle kweliso. |
| Utshintsho lombono | Umbono ofipheleyo, ukubona amachaphaza amnyama okanye iinethi zidada phambi kwamehlo, ukubona ukukhanya okukhanyayo. |
| Intlungu yamehlo | Intlungu yamehlo engapheliyo okanye enzima. |
| Uxinzelelo lwamehlo oluphezulu | Ukuva uxinzelelo ngaphakathi kweliso. Oku kuya kuhlolwa ngugqirha. |
| I-Cataract | Umbono ofipheleyo emva konyango. |
Olu luhlu lusenokungabandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ufumana naziphi na iimpawu ezingaqhelekanga, thetha nogqirha wakho ngazo.
Umyalezo Wokuya Ekhaya
- I-Voretigene neparvovec (LUXTURNA) lunyango oluthile lwezakhi zofuzo kwisifo samehlo esizuzwe njengelifa esibangelwa sisiphene kwizakhi zofuzo ze-RPE65.
- Olu nyango lwenziwa esibhedlele ngugqirha oqeqeshiweyo wamehlo, ofaka inaliti elisweni .
- Ngaphambi konyango, nika ugqirha inkcazo epheleleyo yazo zonke iimeko zakho zempilo, ii-allergies, kunye nokuba ukhulelwe okanye awukhulelwe.
- Emva konyango, ukuba ufumana naluphi na utshintsho embonweni, iintlungu zamehlo, okanye ukubomvu, yazisa ugqirha wakho ngoko nangoko .
- Olu asilonyango lomntu wonke. Ukuba olu nyango lukulungele okanye alukulungele kuya kuqinisekiswa emva kovavanyo olupheleleyo lwezonyango.
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