Muaj tej yam kab mob uas tsis tshua muaj. Thiab kev nyob nrog lawv yog ib qho teeb meem loj heev. Mucopolysaccharidosis VI, lossis MPS VI lossis Maroteaux-Lamy syndrome, yog ib qho kab mob uas tsis tshua muaj, uas yog los ntawm noob caj noob ces. Galsulfase yog ib qho kev kho mob tshwj xeeb uas pab cov neeg uas raug kev txom nyem los ntawm tus kab mob no. Niaj hnub no peb tab tom tham txog qhov kev kho mob tseem ceeb no. Yog tias koj, koj tus menyuam lossis ib tus neeg uas koj paub tau raug sau tshuaj kho mob no, tsab xov xwm no yuav pab tau koj heev.
Galsulfase yog dab tsi?
Hais yooj yim xwb, Galsulfase yog ib qho kev kho mob hloov enzyme. Tam sim no cia peb saib seb qhov ntawd txhais li cas.
Xav txog peb lub cev zoo li ib lub Hoobkas loj. Lub Hoobkas no muaj cov neeg ua haujlwm tshwj xeeb los ua ntau yam haujlwm. Cov neeg ua haujlwm no yog yam peb hu ua enzymes . Hauv MPS VI, ib qho enzyme tshwj xeeb uas xav tau los rhuav tshem cov suab thaj hauv peb lub cev tsis yog lub cev tsim tawm thaum yug los lossis tsim tawm me ntsis.
Yog li thaum cov enzyme no ploj mus, cov suab thaj ntawd pib sib sau ua ke hauv lub cev cov cell. Qhov no yog vim li cas ntau yam kabmob xws li pob txha, lub plawv, lub ntsws, thiab qhov muag raug puas tsuaj thiab cov tsos mob tshwm sim.
Cov tshuaj no, hu ua Galsulfase, ua haujlwm los ntawm kev muab cov enzyme uas lub cev tsis muaj los ntawm sab nraud. Thaum cov tshuaj no nkag mus rau hauv lub cev, nws rhuav tshem cov suab thaj uas tau khaws cia thiab pab tswj cov tsos mob. Lub npe lag luam rau cov tshuaj no yog Naglazyme.
Tseem Ceeb: Qhov no tsis yog kev kho mob rau tus kab mob. Txawm li cas los xij, nws muab kev pab ntau los ntawm kev tswj cov tsos mob thiab txhim kho lub neej zoo.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej pib kho mob
Ua ntej pib 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. Nco ntsoov qhia rau lawv txog cov hauv qab no:
| Cov ntaub ntawv koj yuav tsum muab | Vim li cas qhov ntawd thiaj tseem ceeb? |
|---|---|
| Kev ua xua | Qhia rau koj tus kws kho mob yog tias koj muaj kev tsis haum rau gliclazide, lwm yam tshuaj, khoom noj, lossis cov protein hamster. Qhov no tseem ceeb vim tias cov tshuaj no yog siv rau hauv kev tsim qee yam tshuaj. |
| Kev pw tsaug zog tsis taus pa lossis kev pw tsaug zog tsis taus pa | Ib txhia neeg uas muaj MPS VI yuav muaj teeb meem pw tsaug zog tsis taus pa. Cov tshuaj no yuav hloov qhov mob no, yog li koj tus kws kho mob yuav tsum paub txog qhov no. |
| Kub taub hau los yog kis kab mob | Yog tias koj muaj kev kis kab mob tam sim no, xws li mob khaub thuas lossis mob ntsws, thov qhia rau peb paub ua ntej koj mus kho mob. |
| Cev xeeb tub los yog pub niam mis | Yog tias koj cev xeeb tub, tab tom sim cev xeeb tub, lossis pub niam mis, nco ntsoov qhia rau koj tus kws kho mob ua ntej kho. |
Kev kho mob no muab li cas?
Qhov no tsis yog tshuaj uas koj tuaj yeem nqa mus tsev.
- Kev txhaj tshuaj rau hauv cov hlab ntsha: Qhov no yog kev kho mob uas muab rau hauv cov hlab ntsha, zoo li saline. Hauv kev kho mob, peb hu qhov no ua kev txhaj tshuaj rau hauv cov hlab ntsha .
- Hauv tsev kho mob lossis chaw kho mob: Kev kho mob no yog muab rau hauv tsev kho mob lossis chaw kho mob tshwj xeeb los ntawm tus kws kho mob lossis cov neeg ua haujlwm saib xyuas neeg mob uas tau kawm tiav.
- Lub Sijhawm: Kev kho mob no feem ntau yuav siv sijhawm ob peb teev los ua, thaum lub sijhawm ntawd koj yuav raug saib xyuas los ntawm kws kho mob.
Qhov no puas haum rau cov menyuam yaus?
Yog, kev kho mob no kuj muab rau cov menyuam yaus hnub nyoog tshaj 5 xyoos. Txawm li cas los xij, qhov ntau npaum li cas yog txiav txim siab nrog kev saib xyuas tshwj xeeb, xav txog cov yam xws li tus menyuam mob thiab qhov hnyav. Yog li ntawd, yog tias koj tab tom muab kev kho mob no rau koj tus menyuam, tham nrog koj tus kws kho mob menyuam yaus txog nws.
Yuav ua li cas yog tias koj tsis nco qab noj tshuaj?
Nws yog ib qho tseem ceeb heev uas yuav tsum tau txais kev kho mob no raws li hnub thiab lub sijhawm teem tseg kom ua tiav qhov kev kho mob no. Yog tias muaj qee yam laj thawj uas koj tsis tuaj yeem tuaj kho mob raws li hnub teem tseg, tsis txhob hla mus. Hu rau koj tus kws kho mob lossis tsev kho mob sai li sai tau thiab teem sijhawm rau lwm hnub.
Yuav ua li cas yog tias qhov ntau npaum li cas ntawm cov tshuaj nce ntxiv (overdose)?
Vim tias qhov no yog muab rau hauv tsev kho mob, nyob rau hauv kev saib xyuas ntawm tus kws kho mob, qhov muaj feem yuav noj tshuaj ntau dhau yog tsawg heev. Txawm li cas los xij, yog tias koj xav tias qhov no tau tshwm sim, qhia rau cov neeg ua haujlwm kho mob tam sim ntawd. Yog tias tsim nyog, lawv yuav tiv tauj Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Colombo National kom tau txais lus qhia, lossis xa koj mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) .
Tej zaum cov tshuaj no yuav muaj tej yam tshwm sim tsis zoo li cas?
Ib yam li lwm yam tshuaj, qee cov kev mob tshwm sim tuaj yeem tshwm sim nrog galsulfase. Qee qhov no tuaj yeem ua rau mob hnyav, yog li nws tseem ceeb heev uas yuav tsum paub txog lawv.
| Cov kev mob tshwm sim uas yuav tsum tau qhia rau tus kws kho mob tam sim ntawd | |
|---|---|
| 🔴 Kev ua xua | Tawv nqaij ua pob khaus, khaus, o ntawm lub ntsej muag, daim di ncauj lossis tus nplaig. |
| 🔴 Teeb meem ua pa | Ua pa nyuaj, ua pa nrov nrov. |
| 🔴 Mob hauv siab | Xav tias mob hauv siab lossis nruj. |
| 🔴 Lwm cov tsos mob hnyav | Kev pom kev hloov pauv, mob pob ntseg lossis mob kis kab mob, kiv taub hau, kub taub hau lossis mob khaub thuas, ntshav siab. |
| Feem ntau tsis loj heev (tab sis qhia rau koj tus kws kho mob yog tias nws tseem muaj) | |
| 🟢 Mob lub cev (Mob thiab mob) | Mob cov leeg thiab pob qij txha. |
| 🟢 Teeb meem ntawm lub plab zom mov | Mob plab, xeev siab, ntuav, raws plab. |
| 🟢 Lwm yam me me ntxiv | Mob taub hau, qaug zog. |
Daim ntawv teev npe no tsis suav nrog txhua yam kev mob tshwm sim. Yog tias koj muaj lwm yam tsos mob, thov qhia rau koj tus kws kho mob.
Lwm cov tshuaj uas yuav cuam tshuam nrog cov tshuaj no
Qee cov tshuaj yuav cuam tshuam nrog gliclazide. Piv txwv li:
- Tshuaj Chloroquine
- Gentamicin
- Hydroxychloroquine tshuaj
Daim ntawv no tsis yog daim ntawv teev tag nrho. Yog li ntawd, qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj (tshuaj uas kws kho mob sau, tshuaj uas yuav tsis tas yuav muaj ntawv yuav, cov vitamins, cov tshuaj ib txwm muaj, cov tshuaj Ayurvedic). Thiab, qhia rau nws paub yog tias koj haus luam yeeb lossis haus cawv.
Peb paub tias kev nyob nrog tus mob tsis tshua muaj no tsis yooj yim. Tab sis kev kho mob niaj hnub no zoo li no tuaj yeem pab koj tswj koj cov tsos mob thiab ua lub neej zoo dua. Qhov tseem ceeb tshaj plaws yog kom muaj kev sib raug zoo nrog koj tus kws kho mob thiab ua raws li lawv cov lus qhia kom meej.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Galsulfase yog ib qho kev kho mob hloov enzyme uas tswj cov tsos mob ntawm ib yam kab mob tsawg tsawg hu ua MPS VI. Nws tsis kho tau tag nrho cov kab mob.
- Kev kho mob no yog muab rau hauv tsev kho mob lossis chaw kho mob, los ntawm cov leeg ntshav. Nws tsis tuaj yeem coj mus tsev thiab siv.
- Ua ntej pib kho mob, nws yog ib qho tseem ceeb uas yuav tsum qhia rau koj tus kws kho mob txog txhua yam kev ua xua uas koj muaj, lwm yam mob, thiab txhua yam tshuaj uas koj noj.
- Yog koj muaj cov tsos mob ua xua loj xws li ua pa nyuaj thiab o ntsej muag, nrhiav kev pab kho mob tam sim ntawd.
- Tsis txhob ncua koj hnub kho mob uas tau teem tseg. Yog tias koj ua li ntawd, hu rau koj tus kws kho mob tam sim ntawd.
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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