Koj yuav tsum xav tsis thoob thaum tus kws kho mob hais rau koj tias koj tus menyuam me muaj mob hu ua Spinal Muscular Atrophy (SMA). Nws yog ib qho mob uas rhiab heev. Tab sis tam sim no kev tshawb fawb kho mob tau nce qib ntau heev. Cov kev kho mob tshiab thiab zoo heev tau pom los kho cov mob zoo li no. Onasemnogene Abeparvovec yog ib qho kev kho mob gene ib zaug xwb uas siab heev. Nws paub zoo heev los ntawm lub npe lag luam Zolgensma. Yog li hnub no, cia peb tham txog cov tshuaj no, nws cov haujlwm, tej yam yuav tsum ceev faj txog, thiab cov kev mob tshwm sim hauv txoj kev yooj yim uas koj tuaj yeem nkag siab.
Cov tshuaj no yog hom twg? Muaj dab tsi tshwm sim tiag?
Hais yooj yim xwb, Onasemnogene Abeparvovec yog ib yam tshuaj uas kho tau ib yam mob hu ua Spinal Muscular Atrophy (SMA) . SMA yog ib yam kab mob caj ces uas ua rau cov leeg nqaij hauv peb lub cev maj mam qaug zog thiab lwj tag. Qhov no yog tshwm sim los ntawm qhov tsis zoo hauv ib lub noob caj ces uas tsim cov protein uas tseem ceeb rau kev ua kom cov leeg nqaij noj qab nyob zoo.
Cov tshuaj no ua yog hloov cov noob caj noob ces uas puas lawm nrog ib daim qauv zoo ntawm cov noob caj noob ces uas tuaj yeem tsim cov protein ntawd kom raug. Qhov no hu ua kev kho mob noob caj noob ces . Thaum cov noob caj noob ces noj qab haus huv no nkag mus rau hauv lub cev, nws pib tsim cov protein tseem ceeb. Qhov no tiv thaiv cov leeg kom tsis txhob qaug zog ntxiv thiab cov tsos mob kom tsis txhob hnyav zuj zus raug tswj.
Qhov no yog ib zaug txhaj tshuaj xwb. Vim tias lub cev tau txais cov noob caj noob ces noj qab nyob zoo uas nws xav tau nrog ib koob tshuaj xwb, tsis tas yuav txuas ntxiv txais nws.
Tej yam yuav tsum qhia rau koj tus kws kho mob ua ntej noj cov tshuaj no
Vim tias qhov no yog kev kho mob tshwj xeeb heev, nws yog ib qho tseem ceeb heev uas yuav tsum piav qhia tag nrho txog koj tus menyuam txoj kev noj qab haus huv rau pab pawg kho mob. Ua ntej pib kho mob, nco ntsoov qhia rau tus kws kho mob txog cov no:
- Kev kis kab mob tam sim no: Yog tias tus menyuam muaj kev kis kab mob xws li kub taub hau, mob khaub thuas, lossis hnoos.
- Kab mob siab: Yog tias koj muaj kab mob siab.
- Kev Qhuav Dej: Yog tias lub cev tsis muaj dej txaus.
- Kev Ua Xua: Yog tias koj ua xua rau cov tshuaj no lossis lwm yam tshuaj lossis khoom noj.
- Cev xeeb tub lossis pub niam mis: Kev kho mob no feem ntau yog muab rau cov menyuam yaus, yog li qhov no tsis muaj feem cuam tshuam, tab sis nws yog ib qho tseem ceeb uas yuav tsum paub txog qhov no yog tias nws raug muab rau ib tus neeg hluas hauv txhua txoj kev.
Cov tshuaj no muab li cas?
Qhov no tsis yog tshuaj kho mob hauv tsev. Nws yog muab rau hauv tsev kho mob lossis chaw kho mob tshwj xeeb, nyob rau hauv kev saib xyuas tag nrho ntawm pab pawg kws kho mob uas muaj cov kws kho mob thiab cov kws tu mob.
Qhov no yog kev txhaj tshuaj rau hauv cov hlab ntsha. Muab rau hauv cov hlab ntsha, zoo li cov tshuaj saline, li ib teev. Kev kho mob no tuaj yeem muab rau cov menyuam mos. Txawm li cas los xij, nws yuav tsum tau ceev faj tshwj xeeb thiab saib xyuas tas li.
Yuav ua li cas yog tias koj overdose?
Vim tias qhov no yog muab los ntawm pab pawg kws kho mob hauv tsev kho mob, muaj tsawg txoj hauv kev uas yuav muaj kev siv tshuaj ntau dhau. Txawm li cas los xij, yog tias koj xav tias muaj qee yam tshwm sim, qhia rau pab pawg kws kho mob tam sim ntawd. Txwv tsis pub, hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Hauv Tebchaws Colombo . Lossis coj tus menyuam mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm tsev kho mob ze tshaj plaws.
Tej yam yuav tsum xav txog thaum lub sijhawm kho mob thiab tom qab kho mob
Tom qab tau txais kev kho mob no lawm, muaj ob peb yam uas yuav tsum tau ceev faj tshwj xeeb.
Kev saib xyuas kho mob tas li
Tom qab kho tas, cov kws kho mob yuav saib xyuas tus menyuam tus mob tsis tu ncua. Kev kuaj ntshav yuav ua tsis tu ncua los xyuas tej yam xws li kev ua haujlwm ntawm daim siab.
Kev pheej hmoo ntawm kev kis kab mob
Cov tshuaj no yuav muaj qee yam cuam tshuam rau lub cev tiv thaiv kab mob, uas ua rau muaj kev pheej hmoo ntawm kev kis kab mob.
- Yog koj muaj cov tsos mob xws li kub taub hau, mob khaub thuas, hnoos, lossis mob caj pas, hu rau koj tus kws kho mob tam sim ntawd.
- Tsis txhob muab tshuaj raws li koj xav tau.
- Khaws koj tus menyuam kom deb ntawm cov neeg mob li sai tau.
Tiv thaiv kev kis cov kua dej hauv lub cev mus rau lwm tus (tseem ceeb heev!)
Qhov no yog qhov tseem ceeb tshaj plaws uas koj yuav tsum tau them sai sai rau thaum lub sijhawm kho mob no. Tom qab muab kev kho mob gene, cov kua dej hauv lub cev ntawm tus menyuam (xws li cov qaub ncaug, zis, thiab quav) yuav muaj cov cim ntawm kev kho mob li ib hlis . Koj yuav tsum tiv thaiv cov no kom tsis txhob nkag mus rau hauv lwm tus lub cev.
- Ntxuav Tes: Ntxuav koj txhais tes kom huv si nrog xab npum thiab dej thaum twg koj kov koj tus menyuam cov kua dej hauv lub cev, tshwj xeeb tshaj yog tom qab hloov cov ntaub qhwv menyuam.
- Siv hnab looj tes: Yog tias ua tau, hnav hnab looj tes pov tseg thaum hloov koj tus menyuam daim ntaub qhwv menyuam.
- Pov tseg cov ntaub so ntswg thiab cov khib nyiab: Muab cov ntaub so ntswg qias neeg, muaj zis thiab lwm yam khoom rau hauv lub hnab yas uas kaw zoo thiab pov tseg nrog rau cov khib nyiab ib txwm muaj.
Los ntawm kev ua raws li cov kev ceev faj no kom meej, koj tuaj yeem tiv thaiv lwm tus tswv cuab hauv koj tsev neeg kom tsis txhob tau txais kev kho mob gene no yam tsis tau xav txog.
Lwm cov ntsiab lus
- Kev Pheej Hmoo Los Ntshav: Txawm tias raug mob me me los kuj yuav ua rau los ntshav ntau ntxiv thaum lub sijhawm no. Yog li ntawd, siv txhuam hniav mos mos thaum txhuam koj cov hniav. Yog tias koj mus ntsib kws kho hniav, nco ntsoov qhia rau lawv tias koj tus menyuam tau txais kev kho mob no.
- Kev pheej hmoo ntawm cov qog nqaij hlav:Muaj kev pheej hmoo me me ntawm kev mob qog hauv lub cev vim yog cov tshuaj no. Feem ntau ntawm cov no tsis yog mob qog noj ntshav (benign). Txawm li cas los xij, yog tias koj pom ib qho qog tshiab lossis ib lub qog nyob qhov twg ntawm koj tus menyuam lub cev, qhia rau koj tus kws kho mob tam sim ntawd.
Cov kev mob tshwm sim yog dab tsi?
Ib yam li lwm yam tshuaj, kev kho mob no tuaj yeem muaj cov kev mob tshwm sim. Qee qhov mob hnyav, qee qhov mob tshwm sim ntau. Nws yog ib qho tseem ceeb uas yuav tsum paub txog cov no.
| Cov teebmeem sab nraud | Yam koj yuav tsum paub thiab cov tsos mob |
|---|---|
| Cov kev mob tshwm sim loj heev 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, tus nplaig lossis caj pas. |
| Kev raug mob siab | Mob sab xis saum toj ntawm lub plab, tsis xav noj mov, xeev siab, quav xim dawb, zis daj tsaus lossis xim av, daim tawv nqaij thiab qhov muag daj, thiab qaug zog txawv txawv. |
| Kev mob los yog los ntshav txawv txawv | Xim xiav ntawm qee qhov ntawm lub cev uas tsis paub meej, cov pos hniav los ntshav, thiab ntshav ntswg. |
| Kev kis kab mob | Kub taub hau, mob khaub thuas, hnoos, mob caj pas, cov qhov txhab tsis kho, mob thaum tso zis. |
| Cov tshuaj tiv thaiv kab mob | Mob hauv siab, ua pa nyuaj, kiv taub hau, tsis muaj zog. |
| Kev raug mob raum | Tso zis tsawg dua, o ntawm pob luj taws, tes, lossis taw. |
| Kev mob ntshav tsis txaus | nkees nkees lossis tsis muaj zog txawv txawv, kiv taub hau, mob taub hau, ua pa nyuaj, zis tsaus, tawv nqaij lossis qhov muag daj. |
| 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 | Qhov no yog ib txwm muaj, tab sis yog tias nws tseem mob lossis hnyav heev, qhia rau koj tus kws kho mob. |
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 lossis txawv txog koj tus menyuam, nrog koj tus kws kho mob tham txog qhov ntawd thiab.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Onasemnogene Abeparvovec (Zolgensma) yog ib txoj kev kho mob gene tshwj xeeb, ib zaug rau Spinal Muscular Atrophy (SMA).
- Kev kho mob no yog muab rau hauv tsev kho mob, nyob rau hauv kev saib xyuas tag nrho ntawm pab pawg kws kho mob.
- Nws yog ib qho tseem ceeb heev uas yuav tsum muab tag nrho cov ntaub ntawv kev noj qab haus huv ntawm tus menyuam rau tus kws kho mob ua ntej pib kho mob.
- Nws yog ib qho tseem ceeb heev uas yuav tsum ua tib zoo thiab pov tseg cov kua dej hauv lub cev ntawm tus menyuam, xws li cov quav, zis, thiab cov qaub ncaug, rau ib hlis tom qab kev kho mob. Qhov no yog rau kev nyab xeeb ntawm lwm tus tswv cuab hauv tsev neeg.
- Nrhiav kev kho mob tam sim ntawd yog tias koj pom cov cim qhia tias daim siab puas lawm (qhov muag/tawv nqaij daj, zis tsaus), cov cim qhia tias muaj kab mob (kub taub hau), lossis ua xua hnyav.
- Xav tias dawb tham nrog koj tus kws kho mob txog tej lus nug lossis kev txhawj xeeb uas koj muaj txog kev kho mob no.
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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