Kab mob Fabry yog ib yam mob uas tsis tshua muaj, uas tshwm sim los ntawm noob caj ces vim yog qhov tsis muaj cov enzyme tseem ceeb hauv peb lub cev. Qhov no tuaj yeem cuam tshuam rau ntau qhov ntawm lub cev, xws li lub plawv, lub raum, thiab lub paj hlwb, dhau sijhawm. Yog li, yog tias koj kuj muaj kab mob Fabry, koj tus kws kho mob yuav tau sau tshuaj rau koj hu ua Agalsidase Beta. Hnub no, peb yuav tham txog cov tshuaj no hauv txoj kev yooj yim thiab meej.
Cov tshuaj no yog hom twg?
Hais yooj yim xwb, Agalsidase Beta (lub npe lag luam Fabrazyme) yog ib txoj kev kho mob uas hloov cov enzyme uas tsis txaus hauv lub cev ntawm ib tus neeg uas muaj tus kab mob Fabry. Hauv cov lus kho mob, qhov no hu ua 'Enzyme Replacement Therapy' (ERT).
Qhov tseem ceeb tshaj plaws yog qhov no tsis yog kev kho mob rau tus kab mob. Txawm li cas los xij, kev kho mob no tuaj yeem pab tswj kev puas tsuaj los ntawm tus kab mob rau lub cev thiab txo cov tsos mob.
Cov lus qhia tseem ceeb tshaj plaws rau koj tus kws kho mob
Ua ntej pib kho mob no, nws yog ib qho tseem ceeb uas tus kws kho mob paub txog qee yam txog koj tus mob. Yog li ntawd, yog tias koj muaj ib qho ntawm cov hauv qab no, nco ntsoov qhia rau tus kws kho mob txog nws.
- Yog koj muaj kab mob plawv .
- Yog tias koj tau muaj kev tsis haum tshuaj rau Agalsidase Beta, mannitol, lossis lwm yam tshuaj, khoom noj, lossis xim zas.
- Yog tias koj cev xeeb tub , lossis xav tias yuav cev xeeb tub sai sai no.
- Yog koj yog ib leej niam uas pub mis rau koj tus menyuam .
Koj siv cov tshuaj no li cas?
Cov tshuaj no yog muab rau hauv cov hlab ntsha (infusion) rau hauv cov hlab ntsha. Qhov no tsis yog ib yam dab tsi uas koj ua tau hauv tsev. Kev kho mob no tsuas yog muab los ntawm tus kws kho mob uas tau kawm tiav hauv tsev kho mob lossis chaw kho mob, nyob rau hauv kev saib xyuas ntawm kws kho mob.
Siv rau cov menyuam yaus
Yuav tsum tau ceev faj tshwj xeeb thaum muab cov tshuaj no rau cov menyuam yaus. Qee zaum muab rau cov menyuam yaus hnub nyoog li 2 xyoos, tab sis tsuas yog tus kws kho mob uas kuaj tus menyuam thiaj li txiav txim siab.
Yog tias kuv noj tshuaj ntau dhau lawm ne?
Vim tias cov tshuaj no yog muab rau hauv tsev kho mob, nyob rau hauv kev saib xyuas ntawm tus kws tshaj lij, qhov muaj feem yuav noj tshuaj ntau dhau feem ntau yog tsawg heev. Txawm li cas los xij, yog tias koj xav tias muaj qee yam tshwm sim, hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Hauv Tebchaws Colombo tam sim ntawd, lossis mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ze tshaj plaws.
Yuav ua li cas yog tias koj tsis nco qab noj tshuaj?
Nws yog ib qho tseem ceeb heev uas yuav tsum noj tshuaj rau hnub uas tau teem tseg thiab lub sijhawm uas tau teem tseg rau kev kho mob no. Yog tias muaj qee yam laj thawj uas koj tsis tuaj yeem tuaj rau tsev kho mob rau hnub uas tau teem tseg, qhia rau koj tus kws kho mob lossis chaw kho mob ua ntej thiab teem sijhawm rau lwm hnub.
Koj khaws cov tshuaj no rau qhov twg?
Vim tias cov tshuaj no yog muab rau hauv tsev kho mob lossis chaw kho mob, koj yuav tsis raug tso cai coj mus tsev lossis khaws cia.
Lwm cov tshuaj uas yuav cuam tshuam nrog cov tshuaj no
Qee cov tshuaj uas koj noj yuav cuam tshuam nrog Agalsidase Beta. Yog li ntawd, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj (cov tshuaj uas tau sau ntawv yuav, cov tshuaj uas yuav tsis tas yuav muaj ntawv yuav, cov tshuaj ntsuab, cov vitamins). Tshwj xeeb tshaj yog tias koj noj ib qho ntawm cov tshuaj hauv qab no:
- amiodarone
- tshuaj chloroquine
- tshuaj gentamicin
- Hydroxychloroquine tshuaj
- monobenzone
Daim ntawv teev npe no tsis suav nrog txhua yam kev sib cuam tshuam tshuaj, yog li nws yog qhov zoo tshaj plaws los qhia rau koj tus kws kho mob txog txhua yam koj noj.
Tej yam tshwm sim tsis zoo li cas?
Ib yam li lwm yam tshuaj, cov tshuaj no muaj qee yam kev phiv. Qee yam mob hnyav, qee yam mob tshwm sim ntau. Nws yog ib qho tseem ceeb uas yuav tsum paub txog cov no.
| Cov teebmeem sab nraud | Kev piav qhia |
|---|---|
| Cov kev mob tshwm sim uas yuav tsum tau qhia rau tus kws kho mob lossis tus kws saib mob tam sim ntawd | |
| Kev Ua Xua Hnyav | Tawv nqaij ua pob khaus, khaus, o ntawm lub ntsej muag, daim di ncauj lossis tus nplaig. |
| Ua pa nyuaj | Ua tsis taus pa, ua pa sai. |
| Mob hauv siab los yog nruj | Zoo li koj lub siab raug nias. |
| Lub plawv dhia ceev | Zoo li koj lub plawv dhia ceev lossis koj lub plawv dhia hloov pauv. |
| Lwm yam | kiv taub hau hnyav heev, tes lossis taw o, nyuaj siab. |
| 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) | |
| Koj xav li cas thaum koj txhaj tshuaj | Kub taub hau los yog mob khaub thuas. |
| Mob dav dav | Mob lub cev, mob taub hau. |
| Teeb meem ntawm lub plab zom mov | Xeev siab, ntuav, mob plab lossis tsis xis nyob. |
| Lub siab lub ntsws | Kev xav tsis xis nyob, kev ntxhov siab. |
Daim ntawv teev npe no tsis suav nrog txhua yam kev mob tshwm sim uas yuav tshwm sim. Yog tias koj ntsib teeb meem txawv, nrog koj tus kws kho mob tham txog qhov ntawd.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Agalsidase Beta (Fabrazyme) yog ib qho kev kho mob hloov enzyme rau tus kab mob Fabry. Txawm hais tias nws tsis kho tus kab mob tag nrho, nws tuaj yeem pab tswj cov tsos mob thiab teeb meem.
- Cov tshuaj no muab rau hauv cov hlab ntsha hauv tsev kho mob, yog li nws tseem ceeb heev uas yuav tsum tau kho mob raws sijhawm.
- Koj yuav tsum qhia rau koj tus kws kho mob txog lwm yam tshuaj uas koj noj, txhua yam kev ua xua uas koj muaj, thiab yog tias koj cev xeeb tub lossis pub niam mis.
- Yog koj muaj tej tsos mob xws li ua pa nyuaj, mob hauv siab, lossis tawv nqaij tawm pob thaum lossis tom qab txhaj tshuaj, qhia rau koj tus kws kho mob lossis tus nais tam sim ntawd.
- Yog koj muaj lus nug txog cov tshuaj no, tsis txhob ntshai lossis tsis txhob yig nug koj tus kws kho mob.
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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