Ngaba wena okanye umntu omaziyo wakha wanikwa iyeza elibizwa ngokuba yi-'Givosiran' ngugqirha? Xa usiva elo gama, usenokuziva ungaqhelananga, oko kukuthi, ungaqhelananga, mhlawumbi ude woyike kancinci. Kuqhelekile ukuziva ngaloo ndlela. Kuba la ayingohlobo lwamayeza esiwavayo yonke imihla. Ngoko ke namhlanje, masithethe ngeli yeza elibizwa ngokuba yiGivosiran, lisetyenziselwa ntoni, lisetyenziswa njani, kwaye zeziphi izilumkiso ekufuneka uzithathe, ngendlela elula kakhulu onokuyiqonda.
Yintoni le Givosiran?
Ngamafutshane, iGivosiran sisitofu sokugonya. Saziwa kakhulu ngegama lophawu elithi ``(GIVLAARI)``. Eli yeza lisetyenziswa kakhulu ukunyanga isifo esingaqhelekanga esibizwa ngokuba yi``Acute Hepatic Porphyria``` .
Ngoku usenokuba uyazibuza ukuba yintoni i-'Acute Hepatic Porphyria'. Esi sisifo semfuza esenzeka esibindini sethu. Umzimba wethu udinga ikhemikhali ebizwa ngokuba yi-'porphyrin' ukuze yenze i-hemoglobin egazini. Nangona kunjalo, kubantu abanesi sifo, ngenxa yesiphene kuloo nkqubo, le khemikhali ebizwa ngokuba yi-porphyrin iqokelelana ngokungeyomfuneko emzimbeni. Oku kunokubangela iimpawu ezinzima ezifana nentlungu enzima yesisu, ukuhlanza, ubuthathaka bemisipha, kunye neengxaki zengqondo.
Olu gonyo, olubizwa ngokuba yiGivosiran, lukhethekile kakhulu. Lwenziwe kusetyenziswa ubuchwepheshe obuphambili obubizwa ngokuba yi -'small interferensing RNA' (siRNA) . Oku kuthetha ukuba eli yeza lingena ngqo kwiiseli zethu kwaye limise umyalezo wemfuza obangela ukuqokelelwa kwe-porphyrin okuyingozi. Kufana nokumisa umntu okunika icebiso elingalunganga.
Oku akufani neyeza eliqhelekileyo lokubulala iintlungu. Liyeza elijoliswe kakhulu eliya kwimvelaphi yesifo kwaye lisinyange.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uthathe amayeza
Ngaphambi kokuba uqale iGivosiran, kubaluleke kakhulu ukuthetha ngokukhululekileyo nogqirha wakho malunga nembali yakho epheleleyo yempilo. Qiniseka ukuba ubaxelela oku kulandelayo:
- Isifo sezintso: Ukuba unesifo esinxulumene nezintso.
- Isifo sesibindi: Ukuba unezinye izifo zesibindi ukongeza kwimeko yakho ye-porphyria ekhoyo.
- Ii-Allergy: Xelela ugqirha wakho ukuba une-allergy nakweyiphi na enye iyeza, ukutya, iidayi, okanye izithinteli, kungekuphela nje kwi-Givosiran.
- Ukukhulelwa: Ukuba ukhulelwe okanye ulindele umntwana kungekudala.
- Ukuba ungumama oncancisayo: Ukuba uncancisa umntwana wakho.
Ngokusekelwe kolu lwazi, ugqirha uya kugqiba ukuba olu nyango lufanelekile kuwe okanye akunjalo kunye nendlela yokuqhubeka.
Indlela yokufumana iyeza kunye noko kufuneka ukuqaphele
Eli asiloyeza onokulithatha uye nalo ekhaya ulisebenzise.
- Ulawulo: Olu lujovo olufakwa ngaphantsi kwesikhumba .
- Indawo: Olu gonyo lunikwa kuphela kwiziko lezonyango, njengesibhedlele okanye ikliniki, yingcali yezempilo eqeqeshiweyo.
- Kubantwana: Ukuba eli yeza lisetyenziswa kubantwana abancinci, kufuneka unonophelo olukhethekileyo phantsi kwengcebiso kagqirha wabantwana.
- Ukuba uphoswe yidosi: Ugqirha wakho uza kukunika umhla nexesha lokufumana isitofu sakho sokugonya. Kubaluleke kakhulu ukufumana unyango lwakho ngexesha. Ukuba ngesizathu esithile awukwazi ukuya ngaloo mini, fowunela ugqirha wakho okanye ikliniki ngokukhawuleza uze umxelele.
- Ukuba ugqithisa kakhulu: Ekubeni oku kwenziwa yingcali yezonyango, amathuba okuba ugqithise kakhulu aphantsi kakhulu. Nangona kunjalo, ukuba ukrokrela ukuba kukho into eyenzekileyo, kufuneka utsalele umnxeba iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko, okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Iziphumo ebezingalindelekanga ezinokubakho zeyeza
Njengalo naliphi na iyeza, iGivosiran inokubangela iziphumo ebezingalindelekanga kwabanye abantu. Kubalulekile ukuzazi ezi zinto. Masizihlukanise zibe ngamacandelo amabini.
| Iziphumo ebezingalindelekanga kunye neempawu | Inkcazo |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ezifuna unyango olukhawulezileyo | |
| Iimpendulo ze-Allergic | Ukurhawuzelela kwesikhumba, iimeko ezifana ne-eczema, ukurhawuzelela, ukudumba kobuso, imilebe okanye ulwimi, ubunzima bokuphefumla. Ukuba kukho nayiphi na kwezi zinto, yingxamiseko. |
| Iimpawu Zokwenzakala Kwesibindi | Umchamo otyheli okanye omdaka omnyama, ukutyheli kwamehlo okanye ulusu (i-jaundice), iintlungu kwicala eliphezulu lasekunene lesisu, isicaphucaphu, ukungabi namdla wokutya, ukuziva udiniwe, kunye nomkhuhlane. |
| Iimpawu Zokwenzakala Kwezintso | Ubunzima bokuchama okanye utshintsho olukhulu kubungakanani bomchamo owukhuphayo (ukuphuma komchamo omncinci kakhulu okanye ukungabikho komchamo konke konke). |
| Izinto ezingaqhelekanga ukuba zimbi, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Isicaphucaphu | Ukuziva ngathi isisu sakho siyashukuma okanye ufuna ukuhlanza. |
| Intlungu kwindawo yokutofa | Ububomvu, ukudumba okuncinci, okanye intlungu kwindawo yokutofa. |
| Ukudinwa | Ukuziva udiniwe ngaphezu kwesiqhelo. |
Ngaba kukho iingxaki ngamanye amayeza?
Ewe, ngokuqinisekileyo inokwenzeka. Siyibiza loo nto ngokuthi 'Ukudibana kwamayeza'. Isitofu sokugonya seGivosiran sinokusebenzisana namanye amayeza.
Ngoko ke, xelela ugqirha wakho ngayo yonke into oyisebenzisayo . Oko kuthetha ukuba:
- Amayeza amiselwe ngoogqirha kwezinye izifo.
- Amayeza angathengwa kwikhemesti ngaphandle kwemvume kagqirha (umz. amayeza okudambisa iintlungu, amayeza omkhuhlane).
- Iivithamini, iiminerali okanye ezinye izongezo.
- Imifuno ye-Ayurvedic, yasekuhlaleni okanye yesintu.
- Ukuba utshaya okanye usela utywala, ndixelele.
Ngokukodwa, iyeza lengqondo elithi thioridazine akufuneki lisetyenziswe kunye nale gonyo konke konke. Kwakhona, iimveliso ezine-caffeine kunye namayeza okukhwehlela afana ne-dextromethorphan zinokubangela iingxaki ngale nto.
Olu luhlu aluphelelanga, ngoko ke kungcono ukuba ucacisele ugqirha wakho ngayo yonke into oyithathayo.
Umyalezo Wokuya Ekhaya
- I-Givosiran yinaliti ekhethekileyo enikwa phantsi kolusu yesifo sesibindi esingaqhelekanga esibizwa ngokuba yi-'Acute Hepatic Porphyria'.
- Eli yeza linikwa esibhedlele okanye ekliniki kuphela yingcali yezonyango eqeqeshiweyo. Alilokusetyenziswa ekhaya.
- Ngaphambi kokuba uqale unyango, kubalulekile ukwazisa ugqirha wakho ngazo zonke iimeko zakho zempilo, ii-allergies, kunye nazo zonke ezinye iziyobisi kunye nezongezo ozithathayo.
- Soloko ulumkele iziphumo ebezingalindelekanga ezinzulu, ezinje ngokugula okanye iimpawu zokonakala kwesibindi okanye kwezintso. Ukuba ubona nayiphi na kwezi, yazisa ugqirha wakho ngoko nangoko.
- Ungaze uphoswe kuvavanyo lwegazi kunye neentlanganiso zonyango ezichazwe ngugqirha wakho.
- Ukuba unemibuzo okanye iinkxalabo malunga nale mithi, umntu ofanelekileyo onokumbuza ngayo ngugqirha okunyangayo.
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