Qee zaum peb hnov txog cov kab mob tsis tshua muaj, uas peb tsis tau hnov txog lub npe. Kab mob Gaucher, lossis '(Gaucher's Disease)', yog ib qho kab mob tsis tshua muaj uas tshwm sim los ntawm cov noob caj noob ces. Txawm hais tias kev nyob nrog tus mob zoo li no yog ib qho kev cov nyom, nrog rau kev nce qib ntawm cov tshuaj niaj hnub no, muaj cov kev kho mob zoo uas pab tau lawv. Hnub no peb yuav tham txog ib qho kev kho mob zoo li no, tshuaj tiv thaiv 'Velaglucerase alfa'.
Hais yooj yim xwb, tus kab mob Gaucher yog dab tsi?
Yuav kom nkag siab qhov no, cia peb xav txog peb lub cev zoo li ib lub Hoobkas loj. Hauv lub Hoobkas no, muaj cov 'neeg ua haujlwm' tshwj xeeb uas ua haujlwm sib txawv kom txhua yam ua haujlwm tau zoo. Cov neeg ua haujlwm no yog yam peb hu ua 'enzymes'. Txhua lub enzyme muaj ib txoj haujlwm tshwj xeeb rau nws.
Hauv ib tug neeg uas muaj tus kab mob Gaucher, ib qho ntawm cov enzymes no, lossis ib qho ntawm cov neeg ua haujlwm, yeej tsis muaj txaus. Yog li ntawd, qee cov rog hauv lub cev tsis tuaj yeem raug rhuav tshem thiab tshem tawm ua cov khib nyiab. Cov tshuaj no mam li maj mam pib sib sau ua ke hauv cov kabmob xws li lub siab, lub zais zis, thiab cov pob txha. Qhov no yog qhov ua rau muaj cov tsos mob.
Yog li ntawd, lub luag haujlwm ntawm cov tshuaj tiv thaiv Velaglucerase alfa no yog dab tsi?
`Velaglucerase alfa` (lub npe lag luam `VPRIV`) zoo li ib tug `neeg ua haujlwm hloov` uas cov kws tshawb fawb tau tsim hauv chav kuaj mob los hloov tus neeg ua haujlwm uas ploj lawm hauv lub hoobkas. Yog hais kom meej, qhov no yog ib qho enzyme uas tsim los hloov `enzyme` uas cov neeg mob Gaucher tsis muaj nyob hauv lawv lub cev.
Thaum muab cov tshuaj no rau hauv lub cev, nws yuav ua tiav txoj haujlwm uas tau ncua tseg, rhuav tshem cov rog uas khaws cia, thiab pab tswj cov tsos mob.
Qhov tseem ceeb tshaj plaws: Qhov no tsis yog kev kho rau tus kab mob Gaucher. Txawm li cas los xij, nws tuaj yeem pab tswj cov tsos mob, txo cov kev puas tsuaj ntawm cov kabmob, thiab pab koj ua neej zoo dua.
Cov tshuaj no muab li cas?
Cov tshuaj no tsis yog tshuaj uas koj siv tau hauv tsev. Velaglucerase alfa yog ib qho tshuaj txhaj uas muab ua kua ntsev rau hauv cov leeg ntshav (infusion rau hauv cov leeg ntshav). Kev kho mob no yog muab rau hauv tsev kho mob lossis chaw kho mob tshwj xeeb, nyob rau hauv kev saib xyuas ntawm cov neeg ua haujlwm kho mob. Yog li ntawd, tsis muaj laj thawj txhawj txog koj txoj kev nyab xeeb.
Tej yam yuav tsum qhia rau koj tus kws kho mob ua ntej pib kho mob
Nws yog ib qho tseem ceeb heev rau koj tus kws kho mob kom paub txog koj keeb kwm kev noj qab haus huv kom paub seb qhov kev kho mob no puas yog rau koj thiab puas muaj kev nyab xeeb. Nco ntsoov qhia rau lawv txog tej yam no.
- Cov kev ua xua uas koj muaj:Yog tias koj tau muaj kev tsis haum tshuaj rau lwm yam tshuaj yav dhau los, tshwj xeeb yog imiglucerase (ib yam tshuaj zoo sib xws), khoom noj, xim, lossis cov tshuaj preservatives, nco ntsoov qhia rau koj tus kws kho mob txog lawv.
- Cev Xeeb Tub: Yog tias koj cev xeeb tub, lossis tab tom yuav muaj menyuam hauv lub sijhawm luv luv, koj yuav tsum qhia rau koj tus kws kho mob.
- Kev Pub Mis Nyuj: Yog tias koj yog ib leej niam uas pub mis nyuj rau menyuam, qhia rau koj tus kws kho mob txog qhov no thiab.
- Lwm yam kab mob thiab tshuaj: Muab daim ntawv teev tag nrho ntawm lwm yam tshuaj (tshuaj uas kws kho mob sau lossis tshuaj uas yuav tsis tas yuav muaj ntawv yuav), cov tshuaj ntsuab, thiab cov vitamins uas koj noj rau koj tus kws kho mob. Nws tseem ceeb heev uas yuav tsum qhia rau koj tus kws kho mob yog tias koj haus luam yeeb lossis haus cawv.
Siv rau cov menyuam yaus
Cov tshuaj no qee zaum muab rau cov menyuam yaus hnub nyoog li 4 xyoos, tab sis tsuas yog muaj cov lus qhia tshwj xeeb thiab kev saib xyuas los ntawm kws kho mob xwb. Yog tias koj xav muab cov tshuaj no rau koj tus menyuam, nrog koj tus kws kho mob menyuam tham txog qhov no.
Cov tshuaj no tej zaum yuav muaj tej yam tshwm sim tsis zoo li cas?
Ib yam li lwm yam tshuaj, tshuaj tiv thaiv kab mob 'Velaglucerase alfa' tuaj yeem ua rau muaj kev phiv rau qee tus neeg. Txawm li cas los xij, tsis yog txhua tus neeg yuav muaj. Cov no tuaj yeem muab faib ua ob pawg tseem ceeb. Qee qhov yog qhov hnyav thiab yuav tsum tau tshaj tawm tam sim ntawd. Qee qhov yog qhov ib txwm muaj thiab yuav ploj mus li ob peb hnub.
| Cov teebmeem sab nraud | Koj yuav tsum ua li cas |
|---|---|
| Cov kev mob tshwm sim loj heev uas koj yuav tsum qhia rau koj tus kws kho mob lossis tus kws saib mob tam sim ntawd | |
| Kev ua xua (Khaus tawv nqaij, khaus, o ntawm lub ntsej muag, daim di ncauj, tus nplaig) | Tej zaum yuav tshwm sim thaum lub sijhawm lossis tom qab muab tshuaj. Qhia rau cov neeg ua haujlwm kho mob tam sim ntawd . |
| Teeb meem ua pa | Qhov no yuav yog ib qho tsos mob loj heev. Qhia tam sim ntawd . |
| Kiv taub hau, ntshav siab lossis qis, lub plawv dhia ceev ceev | Yog qhov no tshwm sim thaum lub sijhawm noj tshuaj, qhia rau tus kws saib mob lossis tus kws kho mob tam sim ntawd. |
| Kev los ntshav lossis mob nqaij txawv txawv | Qhia rau koj tus kws kho mob yog tias koj muaj kev raug mob uas tsis paub meej lossis yog tias koj muaj teeb meem tso tseg kev los ntshav. |
| Cov kev mob tshwm sim uas yuav tsum tau tshaj tawm rau tus kws kho mob yog tias lawv tseem muaj lossis ua rau koj mob siab. | |
| Mob taub hau, mob lub cev, mob nraub qaum, mob pob txha lossis mob pob qij txha | Cov no feem ntau tshwm sim. Yog tias lawv tseem muaj, nrog koj tus kws kho mob tham. |
| Kub taub hau, mob khaub thuas, mob caj pas | Nws yuav tshwm sim rau hnub uas noj tshuaj lossis tom qab ntawd. Qhia rau koj tus kws kho mob yog tias nws ua rau koj ntxhov siab. |
| Xeev siab, mob plab | Feem ntau nws yuav ploj mus. Yog tias nws tseem mob, qhia rau koj tus kws kho mob paub. |
| Liab, khaus, lossis mob ntawm qhov chaw txhaj tshuaj | Qhov no feem ntau yuav zoo li qub hauv ib hnub lossis ob hnub. |
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 txawv, tsis txhob ntshai tham nrog koj tus kws kho mob txog qhov ntawd.
Lwm yam uas yuav tsum xav txog thaum lub sijhawm kho mob
- Tau txais kev kho mob raws sijhawm: Yuav kom tau txais txiaj ntsig zoo tshaj plaws ntawm kev kho mob no, nws yog ib qho tseem ceeb heev uas yuav tsum tau txais kev kho mob raws sijhawm thiab raws sijhawm. Yog tias koj mus tsis tau tsev kho mob raws li hnub teem tseg, qhia rau tus kws kho mob lossis tsev kho mob ua ntej thiab teem sijhawm rau hnub tom ntej.
- Kev kuaj mob:Tus kws kho mob yuav kuaj xyuas koj tsis tu ncua kom pom tias kev kho mob ua haujlwm zoo li cas thiab nws cuam tshuam li cas rau koj lub cev. Yog li ntawd, tsis txhob nco qhov kev mus ntsib kws kho mob.
- Noj Tshuaj Ntau Dhau: Qhov no yog tshuaj uas tsev kho mob muab, yog li ntawd qhov muaj feem yuav tshwm sim tsawg heev. Txawm li cas los xij, yog tias koj xav tias koj tau noj tshuaj no ntau dhau, 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) ntawm tsev kho mob ze tshaj plaws.
- Qhov no tsuas yog rau koj xwb: Cov tshuaj no tau muab sau rau koj tus mob thiab koj lub cev. Yog li ntawd, tsis txhob muab cov tshuaj no rau lwm tus rau txhua qhov laj thawj.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Velaglucerase alfa yog kev kho mob enzyme tsim los tswj cov tsos mob ntawm tus kab mob Gaucher.
- Txawm hais tias qhov no tsis kho tau tus kab mob tag nrho los xij, nws pab txhim kho lub neej ntawm cov neeg mob kom zoo dua qub.
- Kev kho mob no yog muab los ntawm cov leeg ntshav hauv tsev kho mob, yog li koj tsis tas yuav txhawj txog koj txoj kev nyab xeeb.
- Ua ntej pib kho mob, qhia rau koj tus kws kho mob txog txhua yam koj ua xua, lwm yam tshuaj uas koj noj, thiab tej yam mob.
- Yog tias muaj cov kev mob tshwm sim loj heev (ua pa nyuaj, ua xua), qhia rau cov neeg ua haujlwm kho mob tam sim ntawd.
- Nws yog ib qho tseem ceeb heev uas yuav tsum sib txuas lus nrog koj tus kws kho mob tsis tu ncua thiab mus ntsib kws kho mob uas tau teem sijhawm tseg.
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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