Thaum koj tus menyuam lossis ib tug neeg hauv tsev neeg raug tus kws kho mob qhia tias lawv muaj ib qho mob hu ua Spinal Muscular Atrophy (SMA), nws yuav tsum hnyav thiab txaus ntshai npaum li cas ... Nws yog ib qho kev kawm rhiab heev. Tab sis tsis txhob txhawj. Niaj hnub no, kev tshawb fawb kho mob tau nce qib ntau heev. Muaj cov kev kho mob tshiab uas tuaj yeem pab tawm tsam cov mob no thiab ua rau lub neej yooj yim dua. Ib qho kev kho mob tshwj xeeb, kev kho mob siab heev yog Nusinersen. Tej zaum koj yuav tau hnov txog nws nyob rau hauv lub npe lag luam Spinraza. Yog li, hnub no, cia peb tham yooj yim thiab ua siab zoo txog cov tshuaj no, nws muab li cas, thiab yam koj xav paub.
Hais yooj yim xwb, Nusinersen yog dab tsi?
Nusinersen yog ib yam tshuaj tshwj xeeb uas tsim los rau kev kho mob Spinal Muscular Atrophy (SMA). SMA yog ib yam kab mob uas muaj los ntawm noob caj noob ces. Hauv qhov no, cov hlwb ntawm cov hlab ntsha (motor neurons) uas tswj peb cov leeg nqaij maj mam qaug zog. Tom qab ntawd cov leeg nqaij tsis ua haujlwm zoo.
Nov yog qhov uas Nusinersen los rau hauv. Cov tshuaj no pab peb lub cev tsim cov protein tseem ceeb hu ua SMN (Kev Ciaj Sia ntawm Lub Cev Muaj Zog). Cov protein no ua rau cov hlwb hlab ntsha uas tswj cov leeg noj qab nyob zoo.
Qhov tseem ceeb yog tias Nusinersen tsis yog kev kho rau SMA. Txawm li cas los xij, nws tuaj yeem pab tswj kev nce qib ntawm tus kab mob thiab txhim kho lub zog ntawm cov leeg nqaij rau qee qhov . Qhov no tuaj yeem txhim kho tus neeg mob 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 Nusinersen, nws yog ib qho tseem ceeb uas yuav tsum piav qhia txog koj lossis koj tus menyuam txoj kev noj qab haus huv. Nco ntsoov qhia rau lawv txog cov hauv qab no:
| Kev noj qab haus huv lossis lub cib fim | Vim li cas nws thiaj tseem ceeb rau tus kws kho mob? |
|---|---|
| Kab mob raum | Vim tias cov raum koom nrog hauv txoj kev tshem tawm Nusinersen ntawm lub cev, tus kws kho mob yuav tsum ceev faj tshwj xeeb yog tias muaj qhov tsis muaj zog hauv cov raum. |
| Cov teeb meem ntshav txhaws, xws li cov platelets qis | Cov tshuaj no qee zaum tuaj yeem cuam tshuam rau cov lej platelet, yog li ntawd yog tias koj muaj kev pheej hmoo ntawm kev los ntshav, koj tus kws kho mob yuav tsum paub txog qhov no ua ntej. |
| Yog tias koj cev xeeb tub los yog tab tom sim cev xeeb tub | Tseem muaj cov ntaub ntawv tsawg tsawg txog cov teebmeem ntawm cov tshuaj no thaum cev xeeb tub, yog li koj yuav tsum tham txog cov kev pheej hmoo thiab cov txiaj ntsig nrog koj tus kws kho mob ua ntej txiav txim siab. |
| Yog tias tus menyuam mos noj niam mis | Vim tias tsis paub meej tias cov tshuaj puas hla mus rau tus menyuam los ntawm mis niam, nws yog ib qho tseem ceeb heev uas yuav tsum tham txog qhov no nrog koj tus kws kho mob. |
Cov tshuaj no muab rau lub cev li cas?
Qhov no tsis yog tshuaj kho mob hauv tsev. Nusinersen yog ib hom tshuaj tiv thaiv uas tus kws kho mob tshwj xeeb hauv tsev kho mob lossis chaw kho mob muab rau.
Qhov no tsis zoo li kev txhaj tshuaj uas koj ib txwm muab rau ntawm caj npab lossis lub pob tw. Nws raug muab rau hauv cov kua dej nyob ib puag ncig cov hlab ntsha hauv tus txha caj qaum, hauv tus txha caj qaum. Yog hais kom meej, qhov no hu ua kev txhaj tshuaj rau hauv lub plab . Cov txheej txheem no yog ua los ntawm pab pawg kws kho mob uas tau kawm tiav thiab muaj kev paub dhau los.
Kev kho mob no muab tau rau cov neeg mob SMA txhua lub hnub nyoog, txij li cov menyuam mos mus txog cov neeg laus. Txawm li cas los xij, qhov kev txiav txim siab yog ua los ntawm koj tus kws kho mob tom qab kuaj xyuas tus neeg mob tus mob kom zoo.
Yog koj tsis tau teem caij mus kho mob, koj yuav ua li cas?
Kev kho mob no yog muab rau raws sijhawm teem tseg. Yog li ntawd , nws yog ib qho tseem ceeb heev uas yuav tsum mus rau tsev kho mob raws li hnub teem tseg kom tau txais kev kho mob. Yog tias muaj xwm txheej ceev uas koj tsis tuaj yeem mus raws li hnub teem tseg, hu rau koj tus kws kho mob lossis tsev kho mob tam sim ntawd thiab qhia rau lawv paub. Lawv yuav qhia koj txog yam yuav tsum ua.
Puas muaj tej yam tshwm sim tsis zoo?
Ib yam li lwm yam tshuaj, tej zaum yuav muaj qee yam kev mob tshwm sim thaum kho nrog Nusinersen. Qee qhov no yog me me, thaum lwm tus xav tau kev saib xyuas tshwj xeeb.
| Hom kev phiv tshuaj | Cov tsos mob |
|---|---|
| Tej yam uas yuav tsum tau qhia rau koj tus kws kho mob lossis chav kho mob ceev (ETU) ntawm tsev kho mob tam sim ntawd | |
| Cov tsos mob ntawm kev los ntshav |
|
| Teeb meem raum | Nyuaj tso zis los yog hloov pauv ntawm cov zis uas koj tso tawm. |
| Tej yam uas feem ntau tsis loj heev, tab sis yuav tsum tau qhia rau kws kho mob yog tias lawv tseem muaj | |
| Cov kev mob tshwm sim feem ntau |
|
Yog tias koj muaj tej yam tsos mob txawv txawv uas tsis tau teev nyob ntawm no, nrog koj tus kws kho mob tham txog tej yam ntawd. Yog tias koj xav tias koj raug tshuaj lom, koj tuaj yeem hu rau National Poisons Information Center ntawm Colombo National Hospital .
Puas nws cuam tshuam nrog lwm cov tshuaj?
Tsis muaj lus ceeb toom txog lwm yam tshuaj uas ua rau muaj kev sib cuam tshuam loj heev nrog Nusinersen. Txawm li cas los xij, kom muaj kev nyab xeeb, qhia rau koj tus kws kho mob txog txhua yam uas koj noj.
- Cov tshuaj rau lwm yam kab mob
- Cov tshuaj uas tsis yog kws kho mob sau
- Cov vitamins, tshuaj ntsuab, lossis cov khoom noj khoom haus ntxiv
- Tsis tas li ntawd, qhia rau tus kws kho mob txog kev haus luam yeeb thiab haus cawv.
Koj tus kws kho mob yuav saib xyuas koj tus mob tsis tu ncua thoob plaws koj txoj kev kho mob. Koj tseem yuav tsum tau kuaj ntshav tas li kom paub tseeb tias koj lub raum ua haujlwm li cas thiab suav cov ntshav platelet. Nws yog ib qho tseem ceeb heev uas yuav tsum tsis txhob hla cov kev kuaj no.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Nusinersen yog ib txoj kev kho mob tshwj xeeb uas pab tswj thiab tswj cov tsos mob ntawm Spinal Muscular Atrophy (SMA). Nws tsis kho tau tus kab mob no.
- Cov tshuaj no yog muab rau hauv tsev kho mob los ntawm tus kws kho mob tshwj xeeb los ntawm kev txhaj tshuaj rau hauv cov kua dej uas nyob ib puag ncig cov hlab ntsha qaum.
- Ua ntej pib kho mob, qhia rau kws kho mob txog txhua yam mob uas koj lossis koj tus menyuam muaj (tshwj xeeb tshaj yog teeb meem raum thiab ntshav txhaws) thiab txhua yam tshuaj uas koj noj.
- Nrhiav kev kho mob tam sim ntawd yog tias koj pom cov kev mob tshwm sim loj heev, xws li cov cim qhia tias los ntshav lossis muaj teeb meem tso zis.
- Nws yog ib qho tseem ceeb heev uas yuav tsum tau kho mob raws sijhawm thiab mus kuaj ntshav raws li tus kws kho mob tau sau tseg.
- Yog koj muaj lus nug ntxiv txog qhov kev kho mob no, thov tsis txhob yig nug koj tus kws kho mob.
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