Ngaba ugqirha wakho ukuxelele okanye umntu kusapho lwakho ukuba unemeko ebizwa ngokuba yiPrimary Hyperoxaluria Type 1 (PH1)? Ukuba kunjalo, usenokuba uxelelwe ngeyeza elibizwa ngokuba yiLumasiran. Ekubeni eli liyeza elikhethekileyo nelingaqhelekanga, usenokuba nemibuzo emininzi ngalo. Kuqhelekile ukuzibuza izinto ezinje, "Kuza kwenzeka ntoni ngale nto?", "Ingaba ikhuselekile?", "Ngaba kukho naziphi na iziphumo ebezingalindelekanga?" Ngoko ke ungakhathazeki, namhlanje siza kuthetha ngale nto yokugonya yeLumasiran ngendlela elula onokuyiqonda.
Masiqale sibone, yintoni iLumasiran?
Ngamafutshane, iLumasiran (igama lophawu: i-OXLUMO) sisitofu esikhethekileyo esinikwa abantu abadala kunye nabantwana abaneengxaki zemfuza ezingaqhelekanga ezibizwa ngokuba yiPrimary Hyperoxaluria Type 1 (PH1).
Kulungile, masibone ukuba kwenzeka ntoni ngokwenene. Umntu onesifo se-PH1 uvelisa ikhemikhali ebizwa ngokuba yi-oxalate emzimbeni wakhe, ingakumbi esibindini. Le oxalate igqithisileyo idibana ne-calcium ukwenza iikristale ezincinci ezifana nesanti. Ezi kristale zinokufakwa kwizintso nakwindlela yomchamo, zibangele umonakalo omkhulu kwizintso, amatye ezintso, kwaye ekugqibeleni ukungasebenzi kakuhle kwezintso.
Umsebenzi ophambili wesitofu sokugonya iLumasiran kukunciphisa ubungakanani be-oxalate eveliswa ngokungeyomfuneko emzimbeni. Oku kunceda kakhulu ekulawuleni umonakalo kwizintso.
Ayisiyo pilisi le. Yinaliti efakwa ngaphantsi kwesikhumba.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale amayeza
Ngaphambi kokuba uqale olu nyango, kubaluleke kakhulu ukuxelela ugqirha wakho imbali yakho epheleleyo yempilo, ingakumbi ngezi zinto.
- Ii-Allergy: Nceda uchaze ngokucacileyo ukuba ngaba unayo nayiphi na i-allergies, kungekuphela nje kwiLumasiran, kodwa nakweyiphi na enye imithi, ukutya, iidayi zokutya, okanye izithinteli.
- Ukukhulelwa: Kufuneka uchaze nokuba ukhulelwe okanye ulindele umntwana kungekudala.
- Ukuncancisa: Ukuba ungumama oncancisayo, yazisa ugqirha.
Ngokusekelwe kolu lwazi, ugqirha uya kugqiba ukuba olu nyango lufanelekile na kuwe, okanye ukuba ufanele ulufumane ngononophelo olukhethekileyo.
Inikwa njani le gonyo? Kwaye ingaba inikwa abantwana?
Olu asilogonyo onokuluthatha ekhaya uze uzinike lona. Luhlala lunikwa phantsi kwesikhumba sakho esibhedlele okanye ekliniki ngugqirha okanye umongikazi oqeqeshiweyo. Ngoko ke kuya kufuneka uye ekliniki ngeentsuku ezicwangcisiweyo zoku.
Ngaba uyabanika abantwana eli yeza?
Ewe, eli yeza linikwa nabantwana abanesifo se-PH1. Nangona kunjalo, xa unika umntwana olu nyango, kufuneka kuqwalaselwe ngokukodwa izinto ezifana nobudala nobunzima. Ke ngoko, ukuba umntwana wakho unikwe eli yeza, zive ukhululekile ukuxoxa ngayo nayiphi na imibuzo okanye amathandabuzo onokuba nawo nogqirha.
Masiqaphele ubungakanani beyeza.
Yintoni omawuyenze ukuba ugqithisile?
Ekubeni oku kunikwa esibhedlele, amathuba okuphosisa idosi aphantsi kakhulu. Nangona kunjalo, ukuba unesikrokro sokuba ngandlela ithile ufumene eli yeza lininzi kakhulu, yazisa abasebenzi bezonyango ngoko nangoko . Okanye yiya kwiCandelo loNyango oluNgxamisekileyo (i-ETU) lesibhedlele esikufutshane. Ukuba kuyimfuneko, ungatsalela umnxeba iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo ukuze ufumane ingcebiso.
Yintoni omawuyenze ukuba uphoswe yidosi yogonyo?
Kubaluleke kakhulu ukufumana isitofu ngexesha nangemihla ecwangcisiweyo ukuze olu nyango luphumelele. Ngoko ke, ungaphoswa yimihla yokuqeshwa enikwe ngugqirha. Ukuba awukwazi ukuya ngenxa yesizathu esingxamisekileyo nesingenakuphepheka, fowunela ugqirha wakho okanye ikliniki ngokukhawuleza kwaye ubazise ngale nto kwaye ucele ingcebiso ngosuku olulandelayo.
Qaphela iziphumo ebezingalindelekanga
Njengalo naliphi na iyeza, iLumasiran inokubangela ezinye iziphumo ebezingalindelekanga. Nangona kunjalo, ayinguye wonke umntu ozifumanayo. Makhe sijonge ukuba zeziphi ezi ziphumo ebezingalindelekanga.
| Uhlobo lwesiphumo esibi | Inkcazo |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha ngoko nangoko | |
| Iimpendulo eziqatha ze-allergy | Ukuba ufumanisa naziphi na iimpawu ezifana nokurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe, okanye ulwimi, okanye ubunzima bokuphefumla, funa ingcebiso kagqirha ngokukhawuleza. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Iimpendulo kwindawo yokujova | Kusenokuba bomvu, iintlungu, ukudumba, okanye ukurhawuzelela kwindawo efakwe kuyo inaliti. Oku kudla ngokunyamalala kwiintsuku ezimbalwa. |
| Intlungu yesisu | Abanye abantu banokuba neentlungu zesisu ezingephi. |
Eyona nto ibalulekileyo kukuba, nokuba awuboni nto kolu luhlu, ungoyiki ukuthetha nogqirha wakho ngayo ukuba ubona into engaqhelekanga okanye eyahlukileyo.
Ngaba kuya kubakho iingxaki ngamanye amayeza?
Ngokwezifundo ezenziweyo ukuza kuthi ga ngoku, akukho ngxelo zithi i-Lumasiran vaccine ibangela ukudibana namanye amayeza.
Nangona kunjalo, oko akuthethi ukuba ungasebenzisa nantoni na oyifunayo. Ukuze ukhuseleke, kungcono ukuxelela ugqirha wakho ngayo yonke into oyisebenzisayo.
- Amayeza kagqirha
- Amayeza angagunyaziswanga ngugqirha
- Iivithamini okanye ezinye izongezo
- Amayeza emveli okanye e-Ayurvedic (iimveliso zezityalo)
Yazisa ugqirha wakho ngayo yonke le nto. Kwakhona, mxelele ukuba utshaya okanye usela utywala.
Umyalezo Wokuya Ekhaya
- I-Lumasiran yinaliti ekhethekileyo enikwa ukunciphisa ubungakanani be-oxalate eqokelelana emzimbeni ngenxa ye-Primary Hyperoxaluria Type 1 (PH1).
- Olu gonyo lunikwa esibhedlele okanye ekliniki kuphela ngabasebenzi bezonyango abaqeqeshiweyo. Asiloyeza elithathwa lithathwe liye ekhaya.
- Ngaphambi kokuba uqale unyango, qiniseka ukuba uxelela ugqirha wakho ngazo zonke izinto ezikubangela ukuba ungabi namdla, ezinye iimeko zempilo, kunye nawo onke amayeza owasebenzisayo.
- Ungaphoswa ziintlanganiso zakho zokugonya ezicwangcisiweyo. Ukuba awukwazi ukuya apho ngenxa yesizathu esithile, fowunela ugqirha wakho ngoko nangoko.
- Ukuba ufumana iimpawu ezinobungozi zokunganyamezelani komzimba ezifana nokudumba kobuso, imilebe, ubunzima bokuphefumla, okanye ukurhawuzelelwa lusu, funa ingcebiso kagqirha ngoko nangoko.
- Ungaze ungathandabuzi ukuthetha nogqirha wakho malunga nazo naziphi na iimpawu ezingaqhelekanga okanye iziphumo ebezingalindelekanga ozifumanayo.
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