Koj tus menyuam puas tau kuaj pom tias muaj tus kab mob Duchenne Muscular Dystrophy (DMD)? Thiab koj puas tau hnov txog cov tshuaj Eteplirsen ua kev kho mob tshwj xeeb rau nws? Nws yog ib qho ib txwm muaj kev ntshai, txhawj xeeb, thiab ua siab deb thaum koj hnov lub npe zoo li no, tshwj xeeb tshaj yog thaum nws cuam tshuam rau koj tus menyuam. Tab sis tsis txhob ntshai. Kev paub yog peb lub zog loj tshaj plaws. Hnub no, cia peb tham hauv txoj kev yooj yim thiab tus phooj ywg txog Eteplirsen yog dab tsi, nws ua dab tsi, thiab koj yuav tsum paub dab tsi txog nws ua niam txiv.
Eteplirsen yog hom tshuaj dab tsi tiag?
Hais yooj yim xwb, Eteplirsen yog ib yam tshuaj tshwj xeeb siv los kho tus mob hu ua Duchenne Muscular Dystrophy (DMD) . Txawm li cas los xij, nws tsis yog muab rau txhua tus menyuam uas muaj DMD. Nws tsuas yog muab rau cov menyuam uas muaj kev hloov pauv tshwj xeeb xwb .
Xav txog nws, cov leeg nqaij hauv peb lub cev zoo li phab ntsa ntawm lub tsev. Cov phab ntsa no xav tau cov cement kom lawv muaj zog. Ib yam li ntawd, kom peb cov leeg nqaij muaj zog thiab noj qab nyob zoo, peb xav tau cov protein tshwj xeeb hu ua dystrophin . Cov menyuam yaus uas muaj DMD muaj qhov tsis zoo hauv kev tsim cov protein dystrophin no.
Qhov uas cov tshuaj Eteplirsen ua yog pab cov protein dystrophin, uas tau raug ua tsis taus los ntawm qhov teeb meem caj ces, kom rov ua haujlwm dua, rau qee qhov. Ntawd yog, cov tshuaj no pab cov leeg nqaij ua qee cov protein dystrophin uas lawv xav tau.
Qhov tseem ceeb, Eteplirsen tsis yog tshuaj kho rau DMD. Txawm li cas los xij, nws tuaj yeem ua rau qeeb qeeb qhov mob nqaij ntshiv uas tshwm sim los ntawm tus kab mob, muab kev pab rau tus menyuam.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej pib kho mob
Ua ntej koj tus menyuam pib kho mob no, nws yog ib qho tseem ceeb uas koj yuav tsum piav qhia meej txog cov lus tseeb no rau koj tus kws kho mob . Tsis txhob zais dab tsi, vim tias tag nrho cov ntaub ntawv no tseem ceeb rau tus menyuam txoj kev nyab xeeb.
- Kev Ua Xua: Nco ntsoov qhia rau koj tus menyuam yog tias lawv muaj kev ua xua rau Eteplirsen lossis lwm yam tshuaj, khoom noj, xim, lossis cov tshuaj tiv thaiv.
- Cev xeeb tub los yog tab tom sim xeeb tub: Qhov no yuav tsis siv rau cov menyuam yaus, vim tias cov tshuaj no feem ntau yog muab rau cov menyuam yaus. Txawm li cas los xij, yog tias ib tug tub ntxhais hluas raug kho rau txhua qhov laj thawj, tus kws kho mob yuav tsum tau qhia yog tias nws cev xeeb tub los yog tab tom sim xeeb tub.
- Pub niam mis: Yog tias tus neeg uas tau txais kev kho mob yog niam pub niam mis, yuav tsum qhia rau tus kws kho mob paub thiab.
Koj muab cov tshuaj no rau ib tug me nyuam li cas?
Qhov no tsis yog tshuaj kho mob hauv tsev. Eteplirsen yog ib qho tshuaj txhaj rau hauv cov leeg ntshav. Kev kho mob no yog muab rau hauv tsev kho mob lossis chaw kho mob, nyob rau hauv kev saib xyuas tag nrho ntawm tus kws kho mob lossis cov neeg ua haujlwm saib xyuas neeg mob uas tau kawm tiav. Yog li ntawd, tsis tas yuav txhawj txog kev nyab xeeb ntawm tus menyuam.
Feem ntau cov tshuaj tiv thaiv no yuav tsum tau txhaj ib zaug ib lub lim tiam. Nws yog ib qho tseem ceeb heev uas yuav tsum ua raws li hnub thiab sijhawm ntawm kev kho mob kom raug.
Yog tias kuv tsis tau noj tshuaj ib hnub, yuav ua li cas?
Yuav kom tau txais txiaj ntsig zoo tshaj plaws ntawm kev kho mob no, nws yog ib qho tseem ceeb uas yuav tsum tau txhaj tshuaj tiv thaiv kab mob raws sijhawm. Yog tias muaj qee yam laj thawj uas koj tsis tuaj yeem coj koj tus menyuam mus rau tsev kho mob raws li hnub teem tseg, hu rau koj tus kws kho mob lossis chaw kho mob tam sim ntawd thiab qhia rau lawv paub. Lawv yuav qhia koj txog yam uas yuav tsum ua tom ntej.
Yog tias kuv noj tshuaj ntau dhau lawm ne?
Qhov no yog muab rau hauv tsev kho mob, yog li ntawd qhov muaj feem yuav tshwm sim yuav luag xoom. Txawm li cas los xij, thaum muaj xwm txheej ceev, yog tias koj xav tias muaj kev siv tshuaj ntau dhau, hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Hauv Tebchaws tam sim ntawd. Lossis coj tus menyuam mus rau Chav Kho Mob Xwm Ceev (ETU) ze tshaj plaws.
Tej yam yuav tsum xav txog thaum lub sijhawm kho mob
Tam sim no tsis tau muaj kev sib cuam tshuam nrog cov tshuaj no. Txawm li cas los xij, kom muaj kev nyab xeeb, muab daim ntawv teev tag nrho ntawm lwm yam tshuaj (xws li cov vitamins, Panadol), cov tshuaj ib txwm muaj, cov tshuaj ntsuab lossis cov tshuaj ntxiv uas koj tus menyuam noj rau koj tus kws kho mob.
Thoob plaws lub sijhawm kho mob, tus kws kho mob yuav saib xyuas tus menyuam tus mob kom zoo zoo. Qhov no txhais tau tias lawv yuav tshuaj xyuas tus menyuam lub zog ntawm cov leeg, kev txav mus los, thiab kev noj qab haus huv tag nrho.
Tej yam tshwm sim tsis zoo li cas?
Ib yam li lwm yam tshuaj, Eteplirsen tuaj yeem ua rau muaj qee yam kev mob tshwm sim. Txawm li cas los xij, tsis yog txhua tus neeg tau txais lawv. Nws yog ib qho tseem ceeb kom paub txog cov no. Cia peb faib cov kev mob tshwm sim no ua ob pawg.
| Cov teebmeem sab nraud | Kev piav qhia thiab yuav ua li cas |
|---|---|
| Cov kev mob tshwm sim loj heev uas yuav tsum tau qhia rau koj tus kws kho mob tam sim ntawd | |
| Kev ua xua hnyav heev |
Yog koj pom ib qho ntawm cov no, nws yog ib qho xwm txheej ceev. Nrhiav kev pab kho mob tam sim ntawd. |
| 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 | |
| Ntuav | Ntuav tom qab noj tshuaj. |
| Mob taub hau | Mob taub hau me me mus rau nruab nrab. |
| Hnoos | Hnoos tshiab los yog hnoos uas twb muaj lawm zuj zus tuaj. |
| Kiv taub hau thiab poob ntawm qhov sib npaug | Kiv taub hau thiab nyuaj rau tswj kev sib npaug thaum taug kev lossis sawv ntsug. |
Yog koj tus menyuam muaj lwm yam tsos mob txawv txawv uas tsis tau hais nyob rau hauv daim ntawv teev npe no, qhia rau koj tus kws kho mob txog lawv thiab. Tsis txhob tsis quav ntsej txog dab tsi.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Eteplirsen yog kev kho mob tshwj xeeb rau cov menyuam yaus uas muaj Duchenne Muscular Dystrophy (DMD) thiab muaj kev hloov pauv caj ces tshwj xeeb .
- Txawm hais tias qhov no tsis yog kev kho rau tus kab mob, nws tuaj yeem pab tswj cov tsos mob thiab qeeb qeeb cov leeg tsis muaj zog.
- Cov tshuaj no yog muab rau hauv tsev kho mob los ntawm cov neeg ua haujlwm kho mob uas tau kawm tiav los ua kev txhaj tshuaj rau hauv cov leeg ntshav, yog li tsis muaj dab tsi yuav txhawj txog thaum nyob hauv tsev.
- Txhua yam kev ua xua uas tus menyuam muaj lossis lwm yam tshuaj uas tus menyuam nojNco ntsoov qhia rau koj tus kws kho mob txog qhov ntawd.
- Yog tias koj muaj cov tsos mob ua xua hnyav xws li tawv nqaij tawm pob thiab lub ntsej muag o tom qab noj tshuaj, nrhiav kev pab kho mob tam sim ntawd.
- Coj koj tus menyuam mus rau tsev kho mob raws sijhawm , tsis txhob plam txhua lub sijhawm teem tseg. Yog tias koj muaj kev txhawj xeeb, hu rau kws kho mob tam sim ntawd.
- Yog koj muaj lus nug ntxiv txog qhov kev kho mob no, thov koj nug koj tus kws kho mob yam tsis muaj kev yig.
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Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
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