Niaj hnub no peb yuav tham txog kev kho mob niaj hnub uas nyuaj me ntsis, tab sis muaj ntau tus neeg tsis tau hnov dua. Nws lub npe yog Elivaldogene Autotemcel. Nws raug muag hauv qab lub npe SKYSONA. Qhov no tsis yog tshuaj ntsiav lossis tshuaj ntsiav ib txwm muaj. Qhov no yog kev kho mob tshwj xeeb rau tus mob neurological uas tsis tshua muaj thiab loj heev hu ua cerebral adrenoleukodystrophy (CALD). Cia peb piav qhia txog kev kho mob no hauv txoj kev yooj yim uas koj tuaj yeem nkag siab.
Muaj dab tsi tshwm sim tiag tiag nrog cov tshuaj no?
Yuav kom nkag siab qhov no, cia peb muab ib qho piv txwv me me. Xav txog tias cov hlwb hauv peb lub hlwb thiab cov hlab ntsha caj qaum zoo li cov xov hluav taws xob. Cov xov hluav taws xob no muaj ib lub hnab yas (kev rwb thaiv tsev) nyob ib puag ncig lawv, uas pab kom cov hluav taws xob mus tau zoo yam tsis muaj kev xau. Ib yam li ntawd, peb cov hlwb kuj muaj ib lub hnab tiv thaiv hu ua 'myelin' nyob ib puag ncig lawv. Lub hnab no yog qhov uas tso cai rau cov lus ntawm cov hlwb mus tau sai thiab raug.
Hauv ib qho kab mob hu ua cerebral adrenoleukodystrophy (CALD), qhov teeb meem ntawm caj ces tiv thaiv lub cev los ntawm kev tsim cov protein uas xav tau los tswj lub 'myelin' sheath no. Lub sheath tiv thaiv no maj mam raug rhuav tshem, ua rau lub paj hlwb ua haujlwm tsis zoo.
Hais yooj yim xwb, kev kho mob no, hu ua Elivaldogene Autotemcel, yog kev coj cov cell los ntawm tus neeg mob lub cev, hloov kho lawv cov noob caj noob ces hauv chav kuaj, thiab muab lub peev xwm rau lawv los tsim cov protein uas ploj lawm. Cov cell uas tau hloov kho lawm ces rov qab coj mus rau hauv tus neeg mob lub cev. Qhov no kuj hu ua kev kho mob noob caj noob ces . Qhov no pab tswj qhov mob hnyav zuj zus.
Tej yam uas koj tus kws kho mob yuav tsum paub ua ntej pib txoj kev kho mob no
Vim tias qhov no yog ib qho kev kho mob nyuaj heev, nws yog ib qho tseem ceeb uas koj pab neeg kho mob yuav tsum paub txog koj tus mob. Ua ntej pib kho mob, koj yuav tsum qhia rau koj tus kws kho mob yog tias koj muaj ib qho ntawm cov mob no:
- Yog tias koj muaj ib yam kab mob (xws li kub taub hau, mob khaub thuas, hnoos).
- Yog koj ua xua rau cov tshuaj no (elivaldogene autotemcel), lwm yam tshuaj, khoom noj, xim, lossis cov tshuaj preservatives.
- Yog tias koj cev xeeb tub los yog sim cev xeeb tub .
- Yog koj pub mis rau koj tus menyuam .
Kev kho mob no muab li cas?
Qhov no tsis yog tshuaj kho mob hauv tsev. Kev kho mob no yog muab rau hauv tsev kho mob lossis chaw kho mob tshwj xeeb los ntawm pab pawg kws kho mob uas tau kawm tiav.
Cov tshuaj no raug txhaj rau hauv lub cev zoo li saline los ntawm cov leeg ntshav. Tag nrho cov txheej txheem yog ua tiav nyob rau hauv kev saib xyuas ze ntawm cov kws kho mob thiab cov kws tu mob.
Ua ntej koj txoj kev kho mob, koj yuav tau txais ib daim ntawv qhia tshwj xeeb hu ua MedGuide . Nws muaj ntau cov ntaub ntawv tseem ceeb txog cov tshuaj no, cov txheej txheem thiab cov kev pheej hmoo. Nws yog ib qho tseem ceeb heev uas yuav tsum nyeem thiab nkag siab zoo.
Kev kho mob no kuj muab rau cov menyuam yaus hnub nyoog tshaj 4 xyoos, tab sis yuav tsum xav txog cov kev ceev faj tshwj xeeb thiab cov qauv.
Yog koj noj tshuaj ntau dhau lawm ces ua li cas?
Vim tias qhov no yog siv nyob rau hauv kev saib xyuas ntawm kws kho mob hauv tsev kho mob, qhov muaj feem yuav tshwm sim no tsawg heev. Txawm li cas los xij, yog tias muaj kev xav tias qhov no tau tshwm sim, yuav tsum qhia rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Colombo National lossis Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm tsev kho mob tam sim ntawd.
Tej yam yuav tsum xav txog thaum lub sijhawm kho mob thiab tom qab kho mob
Tom qab tau txais kev kho mob no, cov kws kho mob yuav saib xyuas koj txoj kev noj qab haus huv tas li. Rau qhov no, koj yuav tsum tau saib xyuas qee yam tshwj xeeb.
- Kev Ntsuas Ntshav: Tom qab kev kho mob, koj yuav tsum tau kuaj koj cov ntshav tsis tu ncua. Qhov no yuav xyuas seb kev kho mob puas ua haujlwm, seb cov hlwb tshiab puas ua haujlwm zoo, thiab seb puas muaj kev phiv.
- Kev Pheej Hmoo ntawm kev kis kab mob: Kev kho mob no yuav ua rau koj lub cev tiv thaiv kab mob tsis muaj zog ib ntus, uas ua rau koj muaj kev pheej hmoo ntawm kev kis kab mob ntau ntxiv. Yog tias koj muaj cov tsos mob xws li kub taub hau, mob khaub thuas, hnoos, lossis mob caj pas , tsis txhob noj tshuaj rau koj tus kheej. Hu rau koj pab neeg saib xyuas kev noj qab haus huv tam sim ntawd . Tsis tas li ntawd, sim nyob deb ntawm cov neeg mob ntau li ntau tau.
- Pub ntshav: Koj tsis tuaj yeem pub ntshav tom qab tau txais kev kho mob no.
- Kev pheej hmoo mob qog noj ntshav: Nrog rau kev kho mob niaj hnub no zoo li no, muaj kev pheej hmoo me me ntawm kev mob qog noj ntshav. Tsis txhob ntshai qhov no, tab sis qhib siab txog qhov kev pheej hmoo no thiab nws yuav raug saib xyuas li cas nrog koj tus kws kho mob.
- Cov Lus Qhia Tshwj Xeeb rau Cov Txiv Neej: Yog tias koj yog ib tug txiv neej uas tab tom kho mob no, koj yuav tsum siv hnab looj tes thaum koj sib deev nrog ib tug poj niam uas muaj peev xwm yug tau menyuam. Yuav tsum ua raws li txoj kev tiv thaiv no rau 6 lub hlis tom qab kho mob. Yog tias koj xav tias koj tus khub cev xeeb tub thaum lub sijhawm no, qhia rau koj tus kws kho mob tam sim ntawd.
Tej yam tshwm sim tsis zoo li cas?
Ib yam li lwm yam tshuaj, kev kho mob no tuaj yeem ua rau muaj kev phiv. Qee yam ntawm lawv yuav tsum tau kho mob tam sim ntawd, thaum lwm yam yuav zoo li qub.
| Cov teebmeem sab nraud | Kev Piav Qhia / 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. |
| Los ntshav | Ntshav hauv cov quav lossis cov quav dub, ntuav zoo li cov av kas fes, zis liab lossis xim av tsaus, cov pob me me liab/ntshav ntawm daim tawv nqaij, thiab mob me ntsis. |
| Kev kis kab mob | Kub taub hau, mob khaub thuas, hnoos, mob caj pas. |
| Cov tsos mob ntawm qaug dab peg (Qaug dab peg) | Muaj mob zoo li qaug dab peg . |
| 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 | |
| Teeb meem ntawm lub plab zom mov | Cem quav, mob plab, raws plab, ntuav, xeev siab. |
| Lwm yam kab mob me me | Tsis qab los noj mov, mob taub hau, mob qhov ncauj lossis caj pas thiab 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 muaj cov tsos mob txawv txawv, nrog koj tus kws kho mob tham txog lawv.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Elivaldogene Autotemcel (SKYSONA) yog kev kho mob gene tshwj xeeb heev rau tus kab mob Cerebral Adrenoleukodystrophy (CALD) uas tsis tshua muaj.
- Kev kho mob no yog muab rau hauv tsev kho mob nyob rau hauv kev saib xyuas ntawm ib pab kws kho mob tshwj xeeb.
- Ua ntej kho mob, nco ntsoov qhia rau koj tus kws kho mob txog koj cov ntaub ntawv kev noj qab haus huv (tshwj xeeb tshaj yog kev kis kab mob, kev ua xua).
- Ua tib zoo saib xyuas cov cim qhia tias muaj kab mob thiab los ntshav tom qab kho mob. Yog tias koj muaj kev txhawj xeeb, qhia rau koj tus kws kho mob tam sim ntawd.
- Cov txiv neej uas tau txais kev kho mob yuav tsum siv hnab looj tes thaum sib deev rau tag nrho lub sijhawm kho mob.
- Tsis txhob ntshai tham nrog koj tus kws kho mob txog tej lus nug lossis kev txhawj xeeb uas koj muaj.
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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