Peb lub cev, yog hais kom meej, yog ib lub tshuab nyuaj heev thiab zoo kawg nkaus. Yuav kom txhua yam hauv lub tshuab no ua haujlwm tau zoo, ib hom protein tshwj xeeb hu ua 'enzymes' yog qhov tseem ceeb. Xav txog, qee zaum vim yog cov laj thawj caj ces, ib qho enzyme tej zaum yuav tsis tsim tawm hauv lub cev ntawm tus neeg lossis tej zaum yuav tsim tawm me me. Kab mob Pompe yog ib qho kab mob tsis tshua muaj tab sis loj heev uas tshwm sim li no. Hnub no peb yuav tham txog kev kho mob tshwj xeeb uas tau muab los tswj tus kab mob no, uas yog, tshuaj tiv thaiv kab mob hu ua Alglucosidase alfa.
Alglucosidase alfa yog dab tsi?
Hais yooj yim xwb, Alglucosidase alfa yog kev txhaj tshuaj rau sab nraud ntawm cov enzyme uas tsis txaus hauv lub cev ntawm ib tus neeg uas muaj tus kab mob Pompe. Qhov no zoo li coj ib tus neeg sab nraud los ua ib txoj haujlwm tshwj xeeb thaum ib tus neeg ua haujlwm tsis tuaj. Txoj kev kho mob no hu ua Enzyme Replacement Therapy (ERT) hauv kev kho mob.
Qhov tseem ceeb tshaj plaws uas yuav tsum nco ntsoov ntawm no yog tias qhov no tsis yog kev kho mob rau tus kab mob. Txawm li cas los xij, kev kho mob no tuaj yeem tswj cov tsos mob, txo cov leeg nqaij tsis muaj zog, thiab txhim kho tus neeg mob lub neej zoo dua. Cov tshuaj no tuaj yeem pom hauv kev ua lag luam hauv qab cov npe lag luam xws li 'Lumizyme' lossis 'Myozyme'.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej noj cov tshuaj no
Ua ntej pib kho mob tshwj xeeb, 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. Qhov uas koj tus kws kho mob paub txog koj txoj kev noj qab haus huv ntau npaum li cas, qhov kev kho mob yuav muaj kev nyab xeeb thiab ua tiav ntau dua. Yog li, yog tias muaj ib qho hauv qab no uas siv rau koj, nco ntsoov hais txog qhov ntawd.
- Kab mob plawv: Yog tias koj muaj kab mob plawv lossis teeb meem ntsig txog lub plawv.
- Kev Nyuaj Siab Ua Pa: Yog tias koj muaj mob ntsws lossis ua pa nyuaj.
- Kev Ua Xua: Yog tias koj muaj kev ua xua rau ib yam dab tsi, koj yuav tsum qhia rau peb paub. Tshwj xeeb tshaj yog:
- Yog tias koj tau muaj kev tsis haum tshuaj rau cov tshuaj no lossis ib qho ntawm nws cov khoom xyaw, xws li mannitol.
- Yog tias koj muaj kev ua xua rau cov protein ntawm hamster lossis nas (qhov no tseem ceeb vim tias cov no yog siv rau hauv kev tsim qee cov tshuaj).
- Yog tias koj muaj kev tsis haum rau lwm yam tshuaj, khoom noj, tshuaj preservatives lossis dyes.
- Cev Xeeb Tub: Yog tias koj cev xeeb tub tam sim no, lossis tab tom sim cev xeeb tub rau yav tom ntej.
- Yog tias koj yog niam pub niam mis rau menyuam: Yog tias koj yog niam uas pub niam mis rau menyuam.
Kev kho mob no muab li cas?
Cov tshuaj no tsis yog tshuaj ntsiav uas yuav tsum nqos, thiab nws kuj tsis yog tshuaj txhaj uas muab tau hauv tsev.
Alglucosidase alfa yog ib qho tshuaj txhaj rau hauv cov hlab ntsha (IVI). Hais yooj yim xwb, nws yog ib yam li cov tshuaj saline.
Kev kho mob no tsuas yog muab rau hauv tsev kho mob lossis chaw kho mob tshwj xeeb xwb, nyob rau hauv kev saib xyuas ze ntawm cov kws kho mob thiab cov neeg ua haujlwm saib xyuas neeg mob . Lawv yuav saib xyuas koj lub plawv dhia, ntshav siab, thiab ua pa thaum lub sijhawm kho mob.
Koj puas muab qhov no rau cov menyuam yaus me?
Yog, kev kho mob no tuaj yeem muab rau cov menyuam mos uas muaj ib hlis xwb. Txawm li cas los xij, tsuas yog kws kho mob menyuam yaus thiaj li txiav txim siab tau. Muaj cov kev ceev faj tshwj xeeb uas yuav tsum tau ua raws li thaum muab kev kho mob no rau ib tug menyuam.
Yuav ua li cas yog tias koj overdose?
Qhov no yog muab rau hauv tsev kho mob, yog li ntawd qhov muaj feem yuav tshwm sim tsawg heev. Txawm li cas los xij, yog tias koj xav tias koj tau noj cov tshuaj no ntau dhau, qhia rau cov neeg ua haujlwm kho mob tam sim ntawd. Thaum muaj xwm txheej ceev, koj tuaj yeem hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Hauv Tebchaws Colombo . Lossis koj yuav tsum mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ze tshaj plaws.
Yog tias kuv tsis tau txais kev kho mob no, yuav ua li cas?
Nws yog ib qho tseem ceeb heev uas koj yuav tsum tuaj koom koj qhov kev teem sijhawm. Yog tias muaj qee yam ua rau koj tuaj tsis tau, tsis txhob hla mus, tab sis hu rau koj tus kws kho mob lossis tsev kho mob tam sim ntawd kom teem hnub thiab sijhawm tshiab.
Cov kev mob tshwm sim uas xav tias yuav muaj yog dab tsi?
Ib yam li lwm yam tshuaj, kev kho mob no muaj qee yam kev phiv. Txawm hais tias feem ntau ntawm cov no yog me me, muaj qee yam uas peb yuav tsum tau ceev faj tshwj xeeb. Cia peb saib qhov no hauv daim ntawv teev kom yooj yim to taub.
| Hom kev phiv tshuaj | Cov yam ntxwv |
|---|---|
| Cov kev mob tshwm sim loj heev uas yuav tsum tau qhia rau tus kws kho mob tam sim ntawd |
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| 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 |
Puas muaj teeb meem dab tsi nrog lwm cov tshuaj?
Feem ntau cov tshuaj no muaj kev sib cuam tshuam tsawg nrog lwm cov tshuaj. Txawm li cas los xij, nws yog ib qho tseem ceeb uas yuav tsum qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj (xws li cov vitamins thiab cov tshuaj ntsuab), thiab seb koj puas haus luam yeeb lossis haus cawv.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Alglucosidase alfa yog ib qho kev kho mob rau tus kab mob Pompe uas hloov cov enzyme uas ploj lawm hauv lub cev, tab sis nws tsis yog kev kho rau tus kab mob.
- Kev kho mob no tsuas yog muab rau hauv tsev kho mob, los ntawm kev txhaj tshuaj (infusion) nyob rau hauv kev saib xyuas ntawm kws kho mob.
- Ua ntej pib kho mob, qhia rau koj tus kws kho mob txog koj keeb kwm kev noj qab haus huv tag nrho, tshwj xeeb tshaj yog txhua yam kev ua xua.
- Nrhiav kev kho mob tam sim ntawd yog tias koj muaj cov tsos mob xws li ua pa nyuaj, mob hauv siab, lossis ua xua hnyav.
- Tsis txhob nco hnub uas koj tau teem tseg rau kev kho mob. Yog tias koj muaj kev tsis xis nyob, qhia rau tus kws kho mob ua ntej.
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