Koj tus kws kho mob puas tau qhia rau koj lossis ib tug neeg hauv koj tsev neeg muaj mob hu ua Primary Hyperoxaluria Type 1 (PH1)? Yog tias muaj, tej zaum koj tau raug qhia txog tshuaj hu ua Lumasiran. Vim tias qhov no yog tshuaj tshwj xeeb thiab tsis tshua muaj, koj yuav muaj ntau cov lus nug txog nws. Nws yog ib txwm xav paub txog tej yam xws li, "Yuav ua li cas nrog qhov no?", "Puas muaj kev nyab xeeb?", "Puas muaj kev phiv?" Yog li tsis txhob txhawj, hnub no peb yuav tham txog tshuaj tiv thaiv Lumasiran no hauv txoj kev yooj yim uas koj tuaj yeem nkag siab.
Cia peb xub saib, Lumasiran yog dab tsi?
Hais yooj yim xwb, Lumasiran (lub npe lag luam: OXLUMO) yog ib hom tshuaj tiv thaiv tshwj xeeb uas muab rau cov neeg laus thiab cov menyuam yaus uas muaj mob caj ces tsawg hu ua Primary Hyperoxaluria Type 1 (PH1).
Zoo, tam sim no cia peb saib seb muaj dab tsi tshwm sim tiag tiag. Ib tug neeg uas muaj kab mob PH1 tsim ntau yam tshuaj hu ua oxalate hauv lawv lub cev, tshwj xeeb tshaj yog hauv lub siab. Cov oxalate ntau dhau no sib xyaw nrog calcium los ua cov pob zeb me me zoo li xuab zeb. Cov pob zeb no tuaj yeem tso rau hauv lub raum thiab txoj hlab zis, ua rau lub raum puas tsuaj loj heev, pob zeb raum, thiab thaum kawg lub raum tsis ua haujlwm.
Lub luag haujlwm tseem ceeb ntawm cov tshuaj tiv thaiv Lumasiran yog txo cov oxalate uas lub cev tsim tawm tsis tsim nyog. Qhov no pab tau zoo heev rau kev tswj hwm kev puas tsuaj rau lub raum.
Qhov no tsis yog tshuaj. Nws yog ib qho tshuaj txhaj rau hauv qab daim tawv nqaij.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej pib noj tshuaj
Ua ntej pib txoj kev kho mob no, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau koj tus kws kho mob txog koj keeb kwm kev noj qab haus huv tag nrho, tshwj xeeb tshaj yog txog cov no.
- Kev Ua Xua: Thov qhia meej meej seb koj puas muaj kev ua xua rau Lumasiran, tsis yog rau lwm yam tshuaj, khoom noj, xim pleev rau khoom noj, lossis cov tshuaj tiv thaiv.
- Cev Xeeb Tub: Koj yuav tsum qhia seb koj puas cev xeeb tub lossis yuav muaj menyuam sai sai no.
- Kev Pub Niam Mis: Yog tias koj yog niam pub niam mis, qhia rau kws kho mob paub thiab.
Raws li cov ntaub ntawv no, tus kws kho mob yuav txiav txim siab seb qhov kev kho mob no puas haum rau koj, lossis koj puas yuav tsum tau txais kev saib xyuas tshwj xeeb.
Cov tshuaj tiv thaiv kab mob no muab li cas? Thiab puas muab rau cov menyuam yaus?
Qhov no tsis yog tshuaj tiv thaiv kab mob uas koj tuaj yeem coj mus tsev thiab muab rau koj tus kheej. Nws ib txwm muab rau hauv qab koj daim tawv nqaij hauv tsev kho mob lossis chaw kho mob los ntawm tus kws kho mob lossis tus nais maum uas tau kawm tiav. Yog li koj yuav tsum mus rau chaw kho mob raws li hnub teem tseg rau qhov no.
Koj puas muab cov tshuaj no rau menyuam yaus?
Yog, cov tshuaj no kuj muab rau cov menyuam yaus uas muaj tus kab mob PH1. Txawm li cas los xij, thaum muab cov tshuaj no rau ib tug menyuam, yuav tsum tau ua tib zoo saib xyuas cov yam xws li hnub nyoog thiab qhov hnyav. Yog li ntawd, yog tias koj tus menyuam tau txais cov tshuaj no, xav tias dawb los tham txog cov lus nug lossis kev tsis ntseeg uas koj muaj nrog tus kws kho mob.
Cia peb ceev faj txog qhov ntau npaum li cas ntawm cov tshuaj.
Yuav ua li cas yog tias koj overdose?
Vim tias qhov no yog muab rau hauv tsev kho mob, qhov muaj feem yuav yuam kev noj tshuaj tsawg heev. Txawm li cas los xij, yog tias koj muaj kev xav tias koj tau txais cov tshuaj no ntau dhau, qhia rau cov neeg ua haujlwm kho mob tam sim ntawd . Los yog mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm lub tsev kho mob ze tshaj plaws. Yog tias tsim nyog, koj tuaj yeem hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Colombo National kom tau txais lus qhia.
Yuav ua li cas yog tias koj tsis nco qab txhaj tshuaj tiv thaiv kab mob?
Nws yog ib qho tseem ceeb heev uas yuav tsum tau txhaj tshuaj tiv thaiv kab mob raws sijhawm thiab raws li hnub teem tseg kom ua tiav txoj kev kho mob no. Yog li ntawd, tsis txhob ncua hnub teem sijhawm uas tus kws kho mob tau muab. Yog tias koj mus tsis tau vim muaj teeb meem ceev, tsis zam tau, hu rau koj tus kws kho mob lossis lub tsev kho mob tam sim ntawd thiab qhia rau lawv paub txog qhov no thiab thov kom tau lus qhia rau hnub tom ntej.
Paub txog cov kev mob tshwm sim
Ib yam li lwm yam tshuaj, Lumasiran tuaj yeem ua rau muaj qee qhov kev mob tshwm sim. Txawm li cas los xij, tsis yog txhua tus neeg tau txais lawv. Cia peb saib seb cov kev mob tshwm sim no yog dab tsi.
| Hom kev phiv tshuaj | Kev piav qhia |
|---|---|
| Cov kev mob tshwm sim loj heev uas yuav tsum tau qhia rau tus kws kho mob tam sim ntawd | |
| Kev ua xua hnyav heev | Yog koj muaj cov tsos mob xws li tawv nqaij tawm pob, ua pob khaus, o ntawm lub ntsej muag, daim di ncauj, lossis tus nplaig, lossis ua pa nyuaj, nrhiav kev pab kho mob tam sim ntawd. |
| Cov kev mob tshwm sim uas feem ntau tsis loj heev, tab sis yuav tsum tau qhia rau tus kws kho mob yog tias lawv tseem muaj | |
| Cov tshuaj tiv thaiv ntawm qhov chaw txhaj tshuaj | Tej zaum yuav muaj qhov liab, mob, o, lossis khaus ntawm qhov chaw txhaj tshuaj. Feem ntau cov no yuav ploj mus li ob peb hnub. |
| Mob plab | Ib txhia neeg yuav mob plab me ntsis. |
Qhov tseem ceeb tshaj plaws yog, txawm tias koj tsis pom dab tsi hauv daim ntawv teev npe no los xij, tsis txhob ntshai tham nrog koj tus kws kho mob txog nws yog tias koj pom qee yam txawv txawv lossis txawv.
Puas yuav muaj teeb meem nrog lwm cov tshuaj?
Raws li kev tshawb fawb uas tau ua txog tam sim no, tsis muaj lus ceeb toom tias tshuaj tiv thaiv Lumasiran ua rau muaj kev sib cuam tshuam nrog lwm cov tshuaj.
Txawm li cas los xij, qhov ntawd tsis tau txhais hais tias koj siv tau txhua yam koj xav tau. Rau koj tus kheej kev nyab xeeb, nws yog qhov zoo tshaj plaws los qhia rau koj tus kws kho mob txog txhua yam koj siv.
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Qhia rau koj tus kws kho mob txog txhua yam no. Thiab, qhia rau nws yog tias koj haus luam yeeb lossis haus cawv.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Lumasiran yog ib qho tshuaj txhaj tshwj xeeb uas muab los txo cov oxalate uas tsim nyob rau hauv lub cev vim yog Primary Hyperoxaluria Type 1 (PH1).
- Cov tshuaj tiv thaiv kab mob no tsuas yog muab rau hauv tsev kho mob lossis chaw kho mob los ntawm cov neeg ua haujlwm kho mob uas tau kawm tiav xwb. Nws tsis yog tshuaj coj mus tsev.
- Ua ntej pib kho mob, nco ntsoov qhia rau koj tus kws kho mob txog koj cov kev ua xua, lwm yam mob, thiab txhua yam tshuaj uas koj noj.
- Tsis txhob ncua koj cov sijhawm teem tseg rau kev txhaj tshuaj tiv thaiv kab mob. Yog tias koj tuaj tsis tau rau ib qho laj thawj twg, hu rau koj tus kws kho mob tam sim ntawd.
- Yog tias koj muaj cov tsos mob ua xua hnyav xws li o ntawm lub ntsej muag, daim di ncauj, ua pa nyuaj, lossis ua pob khaus ntawm daim tawv nqaij, nrhiav kev pab kho mob tam sim ntawd.
- Tsis txhob yig nrog koj tus kws kho mob tham txog tej yam tsos mob txawv txawv lossis tej yam kev mob tshwm sim uas koj ntsib.
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Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus