Ngaba unesifo esibizwa ngokuba yi-`(Porphyria)`? Okanye ngaba kukho umntu omaziyo onesi sifo? Ngaba uneempawu ezifana nentlungu yesisu, ukuhlanza, kunye nobuthathaka emzimbeni? Ngoko ugqirha wakho usenokuba ukuxelele ngesitofu esibizwa ngokuba yi-`Givosiran`. Igama lisenokuvakala lisoyikisa ekuqaleni, kodwa ungakhathazeki. Namhlanje, siza kuthetha ngale yeza ngendlela elula onokuyiqonda.
Yintoni kanye kanye le yeza ibizwa ngokuba yiGivosiran?
Ngamafutshane, i-'Givosiran' sisitofu esinikwa ukunyanga isifo esibizwa ngokuba yi-'(Porphyria)'. Kwesi sifo, into enobungozi yekhemikhali ebizwa ngokuba yi-'(Porphyrins)' iqokelelana emizimbeni yethu. Njengaxa inkunkuma endlwini yethu igcwele, xa ezi zinto zinobungozi ziqokelelana emzimbeni, ufumana iimpawu ezinzima ezifana nentlungu yesisu, ukuhlanza, kunye nokulahlekelwa ngamalungu omzimba. Ngoku, into eyenziwa sesi sitofu se-'Givosiran' kukunciphisa ukwakheka kwezo `(Porphyrins) zinobuthi emzimbeni. Oko kukuthi, isebenza njengokulawula ukwakheka kwenkunkuma. Xa ubungakanani bezi zinto zinobuthi buncipha, iimpawu ozivayo nazo ziyancipha kakhulu.
Eli yeza lidla ngokufumaneka phantsi kwegama lophawu elithi `GIVLAARI`. Kwakhona, oogqirha ngamanye amaxesha banokulinika ezinye izifo. Musa ukukhathazeka ngalo.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uthathe eli yeza
Ugqirha wakho kuya kufuneka azi imbali yakho epheleleyo yempilo ngaphambi kokuba aqalise olu nyango. Ngoko ke, ukuba unayo nayiphi na kwezi zilandelayo, qiniseka ukuba uxelela ugqirha wakho
ngaphandle kokufihla nantoni na .
- Isifo sezintso : Ukuba uneengxaki zezintso .
- Isifo sesibindi : Ukuba unesifo sesibindi.
- Ii-Allergies : Ukuba unayo nayiphi na i-allergies (i-allergies) kungekuphela nje kweli yeza, kodwa nakweminye imithi, ukutya, okanye idayi, nceda usixelele ngayo.
- Ukukhulelwa : Ukuba ukhulelwe okanye ulindele umntwana.
- Ukuba ungumama oncancisayo: Ukuba uncancisa umntwana wakho.
Ukubonelela ngolu lwazi ngokuchanekileyo kubaluleke kakhulu kukhuseleko lwakho.
Ulisebenzisa njani eli yeza?
Eli asiloyeza onokulithatha ekhaya. `I-Givosiran`
sisitofu esifakwa phantsi kolusu .Le mithi uyinikwa ngugqirha okanye ngumongikazi oqeqeshiweyo esibhedlele okanye ekliniki. Ngoko ke akufuneki ukhathazeke ngedosi okanye indlela yokuyisebenzisa.
Ngaba eli yeza linokunikwa abantwana?
Ewe, ngamanye amaxesha abantwana bayanikwa eli yeza. Kodwa lifuna unonophelo olukhethekileyo. Ukuba umntwana wakho uyaludinga olu nyango, thetha nogqirha wabantwana ngalo uze ufumane iinkcukacha.
Yintoni omawuyenze ukuba ugqithisile?
Oku kunikwa esibhedlele, ngoko ke amathuba okuba oku kwenzeke aphantsi kakhulu. Nangona kunjalo, ukuba ukrokrela ukuba usele kakhulu, qhagamshelana
neZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko. Okanye uye
kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Eyona nto ibalulekileyo kukuba eli yeza limiselwe wena wedwa. Ungaze wabelane ngeli yeza nabanye abantu.
Kuthekani ukuba ndiphoswa lusuku lokugonywa?
Kubaluleke kakhulu ukufumana isitofu sogonyo ngexesha lonyango. Ngoko ke ungaphoswa ziintsuku zakho zekliniki. Ukuba awukwazi ukuya kumhla ocwangcisiweyo ngenxa yaso nasiphi na isizathu, nceda ufowunele ugqirha wakho okanye ikliniki kwangethuba uze ubazise.
Ezinye izinto ezinokusebenzisana nale mithi
Amanye amayeza anokubangela iingxaki xa esetyenziswa nge-'Givosiran'. Ngoko ke, kufuneka uxelele ugqirha wakho
ngawo onke amayeza owasebenzisayo. Oku kuquka amayeza ezinye izifo, iivithamini, amayeza esintu, kunye nemifuno.
Ngokukodwa, musa ukusebenzisa i-'Givosiran' kunye nala mayeza: Iingxaki zinokwenzeka nakwezi:- I-Caffeine - efumaneka kwiti nakwikofu
- I-Dextromethorphan (equlethwe kwiisiraphu zokukhwehlela)
Olu luhlu aluphelelanga. Ngoko ke kungcono ukuxelela ugqirha wakho ngazo zonke iziyobisi ozisebenzisayo. Kwakhona, mxelele ukuba uyatshaya, usela utywala, okanye usebenzisa ezinye iziyobisi.
Izinto ekufuneka ziqwalaselwe ngexesha lonyango
Ugqirha wakho uza kukubeka esweni ngokusondeleyo ngelixa ufumana olu gonyo. Banokuyalela
novavanyo lwegazi ukuze babone ukuba iyeza lichaphazela njani umzimba wakho.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengayo nayiphi na iyeza, i-'Givosiran' inokubangela ezinye iziphumo ebezingalindelekanga. Nangona kunjalo, ayinguye wonke umntu ozifumanayo. Ezinye ziyingozi, ngelixa ezinye zixhaphakile. Kubalulekile ukuzazi ezi.
Iziphumo ebezingalindelekanga ze-Givosiran vaccine🚨 Ukuba ufumana ezi mpawu, xelela ugqirha wakho ngoko nangoko🙂 Azisoloko zimbi kakhulu, kodwa ukuba ziyaqhubeka, kufuneka uxelele
ugqirha wakho. | Iimpendulo ze-allergy | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe, ulwimi okanye umqala. |
| Ukulimala kwezintso | Ukuncipha kokuphuma komchamo, ukudumba kwamaqatha, izandla, okanye iinyawo. |
| Ukulimala kwesibindi | Intlungu kwicala eliphezulu lasekunene lesisu, ukuphelelwa ngumdla wokutya, isicaphucaphu, indle ekhanyayo, umchamo otyheli okanye omdaka omnyama, ukutyheli kwamehlo okanye ulusu, ukudinwa okungaqhelekanga. |
| I-Pancreatitis | Intlungu ebuhlungu yesisu evakala ngathi iphuma emqolo, intlungu eba mandundu emva kokutya okanye xa isisu sichukunyiswa, umkhuhlane, isicaphucaphu, kunye nokuhlanza. |
| Ukudinwa | Ukuziva ungenabomi. |
| Isicaphucaphu | Ukuziva ngathi uhlanza. |
| Intlungu kwindawo yokutofa | Ububomvu, ukuqaqamba, okanye ukudumba okuncinci kwindawo yokutofa. |
Ukuba ufumana naziphi na ezinye iimpawu ezingaqhelekanga ezingakhankanywanga kolu luhlu, xelela ugqirha wakho ngazo.
Umyalezo Wokuya Ekhaya
- Igama elithi 'Givosiran' lithetha ' iPorphyria'Isitofu esikhethekileyo esinikwa esibhedlele okanye ekliniki ukunyanga imeko yempilo.
- Ngaphambi kokuba uqale unyango, qiniseka ukuba uxelela ugqirha wakho ngezinye izifo onazo, amayeza owasebenzisayo, ii-allergies, kunye nokuba ukhulelwe na.
- Ukuba ufumana naziphi na iziphumo ebezingalindelekanga ezinje ngeentlungu zesisu , ukutyheli kwamehlo, okanye ukuncipha kokuchama , funa ingcebiso kagqirha ngokukhawuleza ngaphandle kokulibazisa.
- Ungaphoswa ziintlanganiso zakho zeklinikhi ezicwangcisiweyo. Oku kubaluleke kakhulu kwimpumelelo yonyango.
- Ukuba unemibuzo, iinkxalabo, okanye uloyiko malunga nale mithi, thetha nogqirha wakho ngayo ngokukhululekileyo.
IGivosiran, iGIVLAARI, iPorphyria, iPorphyria, isitofu, iGivosiran injection sinhala, unyango lwePorphyria sinhala, iziphumo ebezingalindelekanga, isibindi, izintso, iintlungu zesisu
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