Koj puas tau hnov txog ib yam mob hu ua hemophilia ? Qhov no yog ib yam mob uas tsis tshua muaj tab sis loj heev. Hais yooj yim xwb, nws yog ib yam mob uas cov ntshav tsis khov zoo hauv peb lub cev. Qhov no txhais tau tias txawm tias raug mob me me, ntog, lossis txiav kuj tuaj yeem ua rau los ntshav ntau heev. Qee zaum, los ntshav yam tsis tau npaj tseg tuaj yeem tshwm sim yam tsis muaj laj thawj pom tseeb.
Kab mob hemophilia yog dab tsi tiag?
Xav txog tias thaum peb los ntshav, peb lub cev muaj ib pab neeg ua haujlwm me me los tiv thaiv nws. Peb hu cov neeg ua haujlwm no ua 'cov yam tseem ceeb'. Cov no yog cov protein tshwj xeeb. Cov yam tseem ceeb no los ua ke los ua ib qho ntshav txhaws thiab tiv thaiv kev los ntshav.
Muaj ob hom kab mob hemophilia tseem ceeb:
- Kab mob ntshav tsis txaus (Hemophilia A): Cov neeg no tsis muaj cov protein hu ua factor VIII txaus, uas yog qhov tsim nyog rau kev txhaws ntshav.
- Kab mob ntshav qab zib hom B : Cov neeg no tsis muaj cov protein hu ua factor IX .
Feem ntau koj tus kws kho mob yuav kho qhov no los ntawm kev muab cov tshuaj uas tsis txaus rau koj los ntawm cov hlab ntsha. Kev kho mob kom tiv thaiv kev los ntshav hu ua "kev tiv thaiv," thiab kev kho mob thaum muaj kev los ntshav hu ua "kev kho mob thaum xav tau."
Tiam sis, muaj ib qho teeb meem me me ntawm no ...
Rau qee tus neeg mob, lub cev pib ua haujlwm tawm tsam cov yam ntxwv no uas peb muab los ntawm kev txhaj tshuaj tiv thaiv kab mob. Zoo li nws xav tias lawv yog yeeb ncuab thiab tawm tsam lawv. Peb hu qhov no ua kev tsim cov "inhibitors" . Thaum qhov no tshwm sim, lub zog ntawm kev kho mob uas peb muab txo qis. Yog li, kev kho cov neeg nrog cov 'inhibitors' no nyuaj me ntsis.
Yuav ua li cas rau cov tshuaj tshiab no hu ua Alhemo?
Alhemo(concizumab-mtci) yog ib yam tshuaj tshiab uas tau pom zoo los txo lossis tiv thaiv kev los ntshav, tshwj xeeb tshaj yog rau cov neeg mob uas muaj hemophilia A lossis hemophilia B uas muaj cov 'inhibitors' uas tau hais ua ntej.
Hais yooj yim xwb, peb lub cev muaj ib hom protein uas tiv thaiv cov ntshav kom tsis txhob txhaws. Nws hu ua TFPI (Tissue Factor Pathway Inhibitor) . Xav txog nws zoo li 'tub ceev xwm khiav tsheb' hauv peb lub cev; nws tswj cov txheej txheem ntshav txhaws. Qhov Alhemo ua yog cuam tshuam me ntsis rau txoj haujlwm ntawm 'tub ceev xwm' no hu ua TFPI. Tom qab ntawd, lub cev ua rau muaj lwm yam uas pab kom cov ntshav txhaws (factor Xa), thiab lub peev xwm los tsim cov ntshav txhaws zoo dua. Qhov no txo qhov kev pheej hmoo ntawm kev los ntshav.
Yuav siv Alhemo li cas?
Alhemo yog ib qho tshuaj txhaj rau hauv daim tawv nqaij txhua hnub. Nws muaj ib lub cwj mem uas twb muaj lawm, yog li nws yooj yim heev rau siv. Yog tias koj tus kws kho mob txiav txim siab tias koj tuaj yeem txhaj tshuaj no rau koj tus kheej hauv tsev, lawv yuav qhia koj yuav ua li cas.
- Koob Tshuaj: Yuav muab koob tshuaj ntau dua me ntsis (koob tshuaj thauj khoom) rau thawj hnub ntawm kev kho mob. Tom qab ntawd, koj yuav tsum noj cov koob tshuaj uas tau teem tseg txhua hnub. Cov koob tshuaj raug txiav txim siab raws li koj qhov hnyav, yog li koj yuav tsum qhia rau koj tus kws kho mob yog tias koj qhov hnyav hloov pauv.
- Kev Ntsuas: Plaub lub lis piam tom qab pib kho mob, koj yuav muaj kev ntsuas ntshav los xyuas seb cov tshuaj hauv koj lub cev puas yog. Raws li cov txiaj ntsig, koj tus kws kho mob yuav hloov kho koj cov tshuaj noj.
- Cov chaw txhaj tshuaj tiv thaiv: Cov tshuaj tiv thaiv no muab rau hauv plab (2 nti nyob ib ncig ntawm lub puj ntaws) lossis sab ceg. Tsis txhob txhaj rau tib qho chaw txhua hnub, tab sis hloov qhov chaw. Tsis txhob txhaj rau hauv cov chaw uas mob, raug mob, liab, muaj eczema, lossis muaj cov qhov txhab .
Qhov tseem ceeb tshaj plaws yog, tsis txhob tsum noj cov tshuaj no yam tsis tau nrog koj tus kws kho mob tham. Yuav kom tiv thaiv kev los ntshav, nws yog ib qho tseem ceeb heev uas yuav tsum noj cov tshuaj raws sijhawm txhua hnub.
| Yog tias tsis pub dhau 4 lub lis piam thawj zaug | Hu rau koj tus kws kho mob tam sim ntawd thiab nrhiav kev qhia. |
| Yog tias koj tsis nco qab noj tshuaj tom qab pib noj tshuaj tas | Noj thaum twg koj nco qab tau. Noj thaum koj lub sijhawm ib txwm rau hnub tom qab. |
| Yog koj tsis tau thov Vajtswv ob mus rau rau (2-6) zaug | Thaum koj nco qab tau, noj ob pluag mov ib zaug. Txij hnub tom qab, noj ib pluag mov li qub. |
| Yog tias tsis tau thov Vajtswv xya (7) lossis ntau dua | Hu rau koj tus kws kho mob tam sim ntawd. Koj yuav tsum tau noj tshuaj 'loading dose' dua. |
Cov kev mob tshwm sim yog dab tsi? Yuav ua li cas nrog lawv?
Ib yam li lwm yam tshuaj, Alhemo tuaj yeem muaj cov kev mob tshwm sim.
Cov kev mob tshwm sim feem ntau
Vim tias qhov no yog tshuaj tiv thaiv kab mob, tej zaum yuav muaj kev tsis haum me me ntawm qhov txhaj tshuaj . Piv txwv li:
- Mob nqaij ntuag, liab, khaus, lossis los ntshav me ntsis ntawm qhov chaw txhaj tshuaj.
- Yuav pab tau qhov no, koj tuaj yeem muab ib daim ntaub txias tso rau ntawm thaj chaw ntawd.
- Qhov no kuj tseem tuaj yeem txo tau los ntawm kev hloov qhov chaw txhaj tshuaj txhua hnub.
- Tsis txhob noj tshuaj tua kab mob lossis lwm yam tshuaj yam tsis tau sab laj nrog koj tus kws kho mob.
Cov kev mob tshwm sim loj heev - yuav tsum ceev faj txog qhov no!
Txawm li cas los xij, muaj ib qho tseem ceeb heev uas yuav tsum paub txog: muaj kev pheej hmoo tsawg heev ntawm cov ntshav txhaws (thrombosis) tsim nyob rau hauv cov hlab ntsha .
Cov tes, ceg, ntsws, thiab lub plawv uas ntshav txhaws noLos yog nws tuaj yeem tsim nyob rau hauv cov leeg ntshav hauv cov chaw xws li lub hlwb. Yog tias koj tab tom npaj rau kev phais mob, koj yuav tsum qhia rau koj tus kws kho mob txog nws.
Yog tias koj muaj ib qho ntawm cov tsos mob hauv qab no, nrhiav kev pab kho mob tam sim ntawd yam tsis muaj kev ncua:
- Lub plawv dhia ceev
- Mob hauv siab los yog nruj
- Ua pa nyuaj
- Nyuaj hais lus, hloov pauv hauv kev pom kev
- Mob los yog o ntawm ob txhais ceg
Yog koj muaj cov tsos mob no, hu rau koj tus kws kho mob tam sim ntawd, lossis mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm koj lub tsev kho mob ze tshaj plaws. Qhov no tseem ceeb heev.
Ua li cas koj thiaj tau ib yam tshuaj tshwj xeeb zoo li no?
Alhemo tsis yog tshuaj uas koj yuav tau ntawm cov tsev muag tshuaj ib txwm muaj. Cov no yog ib hom 'tshuaj tshwj xeeb'. Muaj ib txoj kev tshwj xeeb los tau txais cov no.
Tom qab koj tus kws kho mob sau cov tshuaj rau koj, koj yuav raug hu los ntawm ib lub tsev muag tshuaj tshwj xeeb. Lawv yuav yog cov uas yuav muab cov ntaub ntawv rau koj txog yuav ua li cas xa cov tshuaj mus rau koj lub tsev. Tej zaum koj kuj yuav tsum tau txais kev tso cai ua ntej los ntawm koj lub tuam txhab pov hwm. Ib tug neeg sawv cev los ntawm lub tuam txhab uas ua cov tshuaj kuj tseem yuav pab tau nrog cov txheej txheem no. Koj tus kws kho mob yuav coj koj hla txhua yam no.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Hemophilia yog ib qho kev tsis txaus ntawm cov ntshav txhaws.
- Alhemo yog ib qho tshuaj txhaj txhua hnub uas muab rau kom tswj tau qhov ntshav, tshwj xeeb tshaj yog rau cov neeg mob uas tau tsim cov 'inhibitors' los kho cov yam ntxwv.
- Tsis txhob tsum noj cov tshuaj no yam tsis tau koj tus kws kho mob qhia. Noj cov tshuaj raws li tau teem tseg.
- Yuav tsum paub txog qhov kev pheej hmoo loj ntawm cov ntshav txhaws. Yog tias koj muaj cov tsos mob xws li mob hauv siab lossis ua pa nyuaj, mus ntsib kws kho mob lossis ETU tam sim ntawd.
- Vim tias qhov no yog ib yam tshuaj tshwj xeeb, nrog koj tus kws kho mob tham txog cov txheej txheem ntawm kev tau txais nws thiab xyuas kom koj nkag siab zoo.
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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