Thaum tus kws kho mob qhia koj tias koj tus menyuam muaj ib yam mob tsis tshua muaj hu ua Mucopolysaccharidosis hom VII, lossis MPS VII (Sly Syndrome) luv luv, koj, ua ib leej niam lossis leej txiv, yuav tsum tau xav tsis thoob thiab txhawj xeeb heev. Tib lub sijhawm, thaum koj hnov txog cov tshuaj tiv thaiv hu ua Vestronidase alfa (lub npe hom: MEPSEVII) ua kev kho rau qhov no, koj yuav tsum muaj ntau cov lus nug hauv koj lub siab. Nws yog ib txwm xav txog tej yam zoo li, "Cov tshuaj no yog dab tsi? Nws puas yuav pab tau tus menyuam? Puas muaj tej yam tshwm sim?" Tsis txhob ntshai. Hnub no, peb yuav tham txog cov tshuaj no hauv cov lus yooj yim uas koj nkag siab tau, hauv txoj kev phooj ywg.
Hais yooj yim xwb, Vestronidase alfa yog dab tsi?
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 sib txawv. Peb hu cov neeg ua haujlwm no ua 'enzymes'. Hauv ib tug menyuam uas muaj mob zoo li MPS VII, lub cev tsis tsim ib qho enzyme tseem ceeb, lossis nws tsim tsawg heev ntawm nws.
Vestronidase alfa yog ib txoj kev kho mob uas daws qhov teeb meem ntawd . Yog hais kom meej, nws yog ib txoj kev kho mob hloov enzyme (ERT) . Qhov tshuaj tiv thaiv no ua yog muab ib qho enzyme rau tus menyuam uas tsis yog tsim los ntawm lub cev. Thaum cov enzyme no nkag mus rau hauv lub cev, nws rhuav tshem cov tshuaj lom neeg uas sib sau ua ke hauv lub cev thiab pab tswj cov tsos mob.
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 cov tsos mob, txhim kho tus menyuam lub neej zoo, thiab ua rau tus menyuam nyob tau zoo dua.
Yuav muab cov tshuaj no rau tus menyuam li cas?
Cov tshuaj no tsis yog ib lub tshuaj uas koj nqos tau los yog txhaj rau hauv tsev. Vestronidase alfa yog muab ua ib yam tshuaj txhaj rau hauv cov hlab ntsha, zoo li saline, thiab muab rau hauv cov hlab ntsha .
Cov txheej txheem no yeej ib txwm ua nyob rau hauv tsev kho mob lossis chaw kho mob , nyob rau hauv kev saib xyuas ze ntawm cov kws kho mob thiab cov kws tu mob. Nws tuaj yeem siv sijhawm ntau teev. Pab pawg kho mob yuav tshuaj xyuas tus menyuam tus mob tas li (lub plawv dhia, ntshav siab, thiab lwm yam) thaum tus menyuam tab tom txais kev kho mob no. Yog li koj tsis tas yuav txhawj txog kev nyab xeeb ntawm koj tus menyuam.
Txawm hais tias kev kho mob no tuaj yeem muab rau cov menyuam mos tshiab los xij, muaj cov kev ceev faj tshwj xeeb uas yuav tsum tau ua raws li nyob ntawm lub hnub nyoog thiab mob ntawm tus menyuam. Koj tus menyuam tus kws kho mob yuav qhia koj txog qhov no.
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 tus kws kho mob txog kev noj qab haus huv ntawm koj tus menyuam. Cov ntaub ntawv no yuav txiav txim siab seb tus menyuam yuav raug kho li cas thiab yuav tsum ceev faj li cas.
| Qhov teeb meem yuav tsum tau qhia | Vim li cas qhov ntawd thiaj tseem ceeb? |
|---|---|
| Txhua yam kev ua xua | Nco ntsoov qhia rau koj tus kws kho mob yog tias koj muaj kev tsis haum rau vestronidase alfa, lwm yam tshuaj, khoom noj, xim, lossis cov tshuaj preservatives. Qhov no yuav pab tiv thaiv kev tsis haum tshuaj hnyav. |
| Cev xeeb tub los yog sim cev xeeb tub | Yog tias tus neeg uas tau txais kev kho mob yog ib tug tub ntxhais hluas, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau lawv paub seb lawv cev xeeb tub lossis tab tom sim cev xeeb tub. |
| Pub niam mis | Yog leej niam tab tom kho mob, nws yuav tsum qhia rau tus kws kho mob seb nws puas pub niam mis rau tus menyuam. |
Peb yuav tsum ceev faj txog tej yam twg thaum muab tshuaj?
Yuav tsum paub txog tej kev ua xua hnyav.
Cov tshuaj no tuaj yeem ua rau muaj kev tsis haum tshuaj hnyav rau qee tus menyuam. Txhawm rau kom txo qhov kev pheej hmoo no, koj tus kws kho mob yuav txiav txim siab muab lwm yam tshuaj rau koj (piv txwv li, cov tshuaj antihistamines xws li piritan, cov tshuaj txo qhov kub taub hau) li ib teev ua ntej muab tshuaj tiv thaiv Vestronidase alfa. Yog li ua raws li koj tus kws kho mob cov lus qhia kom meej.
Tsis Tau Noj Tshuaj
Nws yog ib qho tseem ceeb heev uas yuav tsum tau txhaj tshuaj tiv thaiv kab mob no raws sijhawm teem tseg. Yog tias muaj qee yam ua rau koj mus tsis tau tsev kho mob raws li hnub teem tseg, hu rau koj tus kws kho mob tam sim ntawd thiab qhia rau lawv paub, kom lawv thiaj li qhia tau koj txog hnub tom ntej.
Kev noj tshuaj ntau dhau
Vim tias cov tshuaj no muab rau hauv tsev kho mob, qhov muaj feem yuav noj tshuaj ntau dhau yog tsawg heev. Txawm li cas los xij, yog tias qhov no tshwm sim lossis koj xav tias muaj, qhia rau pab pawg kho mob tam sim ntawd. Yog tias koj muaj teeb meem hauv tsev, hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Colombo National . Lossis coj tus menyuam mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm tsev kho mob ze tshaj plaws.
Teeb meem nrog lwm cov tshuaj
Tseem tsis tau muaj kev kawm txog seb cov tshuaj no cuam tshuam nrog lwm cov tshuaj li cas. Yog li ntawd, nws yog ib qho tseem ceeb heev uas yuav tsum qhia rau koj tus kws kho mob txog lwm yam tshuaj, cov vitamins, cov tshuaj ntsuab, lossis cov tshuaj ntxiv uas koj tus menyuam noj. Tsis tas li ntawd, tsis txhob pib noj cov tshuaj tshiab yam tsis tau nrog koj tus menyuam tus kws kho mob tham ua ntej.
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 Vestronidase alfa tuaj yeem ua rau muaj qee yam kev mob tshwm sim. Txawm hais tias feem ntau ntawm cov no yog me me, muaj qee yam uas peb yuav tsum paub txog.
| 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 | |
|---|---|
| Cov tsos mob ntawm kev ua xua hnyav | Kev khaus ntawm daim tawv nqaij, eczema, tawv nqaij tawm pob, khaus, o ntawm daim di ncauj, tus nplaig lossis lub ntsej muag. |
| Ua pa nyuaj | Ua pa nyuaj, hauv siab nruj, suab nrov txawv txawv thaum ua pa. |
| Ntshav siab qis | Kiv taub hau, qhov muag xiav, yuav luag tsis nco qab. |
| Cov kev mob tshwm sim uas feem ntau tsis txaus ntshai, tab sis yuav tsum tau qhia rau tus kws kho mob yog tias lawv tseem muaj | |
| Mob raws plab | Mob plab. |
| Tsis xis nyob ntawm qhov chaw txhaj tshuaj | Mob, liab, lossis o nyob ib ncig ntawm qhov chaw txhaj tshuaj. |
Daim ntawv teev npe no tsis suav nrog txhua yam kev mob tshwm sim uas yuav tshwm sim. Tsis tas li ntawd xwb, yog tias koj pom muaj dab tsi txawv txawv, tsis txhob yig nrog koj tus kws kho mob tham txog qhov ntawd.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Vestronidase alfa yog ib qho kev kho mob hloov enzyme uas tswj cov tsos mob ntawm ib qho mob tsis tshua muaj hu ua MPS VII (Sly Syndrome). Nws tsis yog kev kho rau tus kab mob.
- Kev kho mob no yog muab ua ib qho kev txhaj tshuaj rau hauv cov leeg ntshav hauv tsev kho mob, nyob rau hauv kev saib xyuas ntawm kws kho mob.
- Ua ntej pib kho mob, nws yog ib qho tseem ceeb uas yuav tsum qhia rau tus kws kho mob txog txhua yam kev ua xua thiab lwm yam mob ntawm koj tus menyuam.
- Yog tias koj muaj cov tsos mob ua xua hnyav xws li o ntawm lub ntsej muag, ua pa nyuaj, lossis ua pob khaus tawv nqaij thaum kho mob, qhia rau pab pawg kho mob tam sim ntawd.
- Tsis txhob ncua koj hnub kho mob uas tau teem tseg rau txhua qhov laj thawj. Yog tias koj tsis ua tiav, hu rau koj tus kws kho mob tam sim ntawd.
- Yog tias koj muaj lus nug lossis kev txhawj xeeb txog cov tshuaj no, nrog koj tus kws kho mob tham.
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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