Koj puas pom koj tus kheej nyob rau hauv qhov xwm txheej uas txawm tias yog ib qho me me xwb los ua rau koj los ntshav tsis tu ncua? Tej zaum koj muaj teeb meem ntshav txhaws zoo li Hemophilia B. Hnub no peb yuav tham txog ib yam tshuaj tshwj xeeb uas pab peb lub cev rau cov xwm txheej zoo li no. Nws yog ib qho tshuaj tiv thaiv hu ua Factor IX. Tsis txhob ntshai thaum koj hnov qhov no. Cia peb nkag siab txhua yam txog qhov no yooj yim.
Factor IX yog dab tsi?
Hais yooj yim xwb, Factor IX yog ib qho protein uas tseem ceeb rau peb cov ntshav kom khov. Feem ntau, thaum ib tug neeg raug mob, ntshav yuav tsum tsis txhob los vim tias cov protein no (cov yam ua rau khov) ua haujlwm ua ke. Txawm li cas los xij, rau cov neeg uas muaj tus mob hu ua Hemophilia B, cov protein no hu ua Factor IX tsis tsim tawm ntuj tsim los yog tsim tawm tsawg heev.
Yog li, cov tshuaj no ua haujlwm los kho qhov tsis txaus ntawd. Factor IX, uas yog muab ua tshuaj tiv thaiv kab mob, pab cov ntshav txhaws thiab tswj kev los ntshav thaum nws nkag mus rau hauv lub cev. Ntxiv rau hemophilia B, cov kws kho mob kuj tseem yuav sau cov tshuaj no rau qee yam mob uas tiv thaiv cov ntshav kom tsis txhob txhaws.
Tej yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej noj tshuaj
Zoo, tam sim no muaj ob peb yam koj yuav tsum qhia rau koj tus kws kho mob ua ntej noj cov tshuaj no. Tsis txhob zais cov no, vim lawv tseem ceeb heev rau koj txoj kev nyab xeeb.
- Lwm yam kab mob uas koj muaj:
- Kab mob siab
- Lwm yam teeb meem coagulation
- Ib qho mob uas cov ntshav txhaws tsim nyob rau hauv cov hlab ntsha (thrombosis)
- Kev Ua Xua: Koj puas tau muaj kev ua xua rau tshuaj, khoom noj, xim, lossis cov tshuaj preservatives? Nco ntsoov hais qhov no, tshwj xeeb tshaj yog tias koj ua xua rau tib neeg lossis tsiaj protein (piv txwv li, nas, hamsters).
- Cev Xeeb Tub thiab pub niam mis rau menyuam: Qhia rau koj tus kws kho mob yog tias koj cev xeeb tub, tab tom sim cev xeeb tub, lossis pub niam mis rau menyuam.
Thaum muab cov ntaub ntawv no rau koj tus kws kho mob, nws tuaj yeem txiav txim siab qhov kev kho mob zoo tshaj plaws thiab muaj kev nyab xeeb tshaj plaws rau koj.
Koj siv cov tshuaj no li cas?
Qhov no yog kev txhaj tshuaj rau hauv cov leeg ntshav (`(txhaj tshuaj rau hauv cov leeg ntshav)`). Feem ntau tus kws kho mob hauv tsev kho mob lossis chaw kho mob muab tshuaj rau nws.
Tiam sis qee zaum, koj yuav tau siv cov tshuaj no hauv tsev. Yog li ntawd, koj yuav tau txais kev cob qhia tsim nyog ntawm tsev kho mob. Nws yog ib qho tseem ceeb heev uas yuav tsum ua raws li cov lus qhia ntawd.
Yog tias koj siv nws hauv tsev, nco ntsoov cov no:
- Kev Npaj: Cia cov hmoov tshuaj thiab cov kua tshuaj kom sov li chav tsev ib pliag.
- Kev Sib Tov: Sib tov kom zoo raws li qhia. Tsis txhob co hnyav heev kom ua npuas dej. Tig lub raj mis kom yaj.
- Kev Siv: Noj cov tshuaj raws li tau teem tseg, raws li lub sijhawm tau teem tseg, raws li koj tus kws kho mob tau teem tseg. Pov tseg cov tshuaj seem.
- Kev Pov Tseg Cov Koob: Qhov no tseem ceeb heev. Tsis txhob muab cov koob lossis cov koob txhaj tshuaj uas siv lawm pov tseg rau hauv lub thoob khib nyiab. Lawv yuav tsum muab tso rau hauv lub thawv tshwj xeeb rau cov khoom siv ntse. Yog tias koj tsis muaj ib qho, nug koj tus kws kho mob kom muab ib qho.
Cov tshuaj no puas muab tau rau menyuam yaus?
Yog, qee zaum, cov tshuaj no kuj muab rau menyuam yaus. Tab sis nws yuav tsum tau ceev faj tshwj xeeb. Yog li ntawd, yog tias koj muab cov tshuaj no rau koj tus menyuam, nrog koj tus kws kho mob menyuam tham txog qhov no kom zoo zoo.
Yuav ua li cas yog tias koj noj tshuaj ntau dhau?
Yog koj xav tias koj tau noj tshuaj no ntau tshaj li qhov tau teev tseg, hu rau Lub Chaw Qhia Txog Tshuaj Lom Hauv Tebchaws ntawm Tsev Kho Mob Colombo National tam sim ntawd . Los yog mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm tsev kho mob ze tshaj plaws. Tsis txhob ncua sijhawm.
Lwm yam uas yuav cuam tshuam nrog cov tshuaj
Tej tshuaj yuav cuam tshuam nrog Factor IX. Piv txwv li:
- Aminocaproic acid
- Factor VIIa (factor VIIa)
- Tranexamic acid
Daim ntawv teev npe no tsis tiav. Yog li ntawd, qhia rau koj tus kws kho mob txog txhua yam tshuaj uas koj noj (txawm tias yog lwm tus kws kho mob sau ntawv lossis yuav ntawm lub tsev muag tshuaj), cov vitamins, cov tshuaj ntsuab uas koj siv, thiab yog tias koj haus luam yeeb, haus cawv, lossis siv lwm yam tshuaj .
Tej yam yuav tsum ceev faj thaum siv cov tshuaj
- Kev Pheej Hmoo ntawm Kab Mob: Qee cov khoom Factor IX yog ua los ntawm cov ntshav tib neeg. Yog li, muaj kev pheej hmoo me me ntawm kev kis cov khoom xws li kab mob. Tab sis tsis txhob txhawj, cov txheej txheem siab tshaj plaws yog siv los tua feem ntau ntawm cov kab mob thiab cov kab mob no thaum cov tshuaj no raug tsim. Yog tias koj muaj lus nug txog qhov no, tham nrog koj tus kws kho mob. Yog tias koj nyuam qhuav kuaj pom tias muaj kab mob hemophilia, nws yog ib qho tseem ceeb heev uas yuav tsum tau txhaj tshuaj tiv thaiv kab mob Hepatitis A thiab B.
- Daim Ntawv Pov Thawj: Yog koj muaj tus kab mob hemophilia, nco ntsoov nqa daim npav pov thawj uas muaj koj cov ntaub ntawv. Nws yuav tsum muaj koj lub npe, lub npe thiab qhov ntau npaum li cas ntawm cov tshuaj uas koj noj, lub npe thiab tus xov tooj ntawm koj tus kws kho mob, thiab cov ntaub ntawv ntawm ib tus neeg uas yuav tsum tiv tauj yog tias muaj xwm txheej ceev. Qhov no yuav yog ib qho kev cawm siav.
Tej zaum yuav muaj tej yam tshwm sim ntawm cov tshuaj no
Ib yam li lwm yam tshuaj, qhov no tuaj yeem ua rau muaj kev phiv rau qee tus neeg. Cia peb saib seb lawv yog dab tsi.
| Kev faib tawm ntawm cov kev mob tshwm sim | |
|---|---|
| Tej yam uas yuav tsum qhia rau koj tus kws kho mob lossis Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) tam sim ntawd: | |
| Kev ua xua | Tawv nqaij ua pob khaus, khaus, o ntawm lub ntsej muag, daim di ncauj lossis tus nplaig. |
| Teeb meem plawv | Mob hauv siab, lub plawv dhia ceev lossis tsis xwm yeem. |
| Ua pa nyuaj | Ua pa nyuaj, muaj suab nrov hauv siab. |
| Kub taub hau los yog mob khaub thuas | Kub taub hau los yog mob khaub thuas tsis muaj laj thawj. |
| Teeb meem ntawm qhov chaw txhaj tshuaj | Mob, liab, lossis o ntawm qhov chaw ntawd. |
| Tej yam uas feem ntau tsis loj heev, tab sis yuav tsum tau qhia rau kws kho mob yog tias lawv tseem muaj: | |
| Flushing | Kev xav liab thiab kub ntawm lub ntsej muag lossis lub cev. |
| Mob taub hau | Mob taub hau dav dav. |
| Xeev siab thiab ntuav | Mob plab thiab ntuav. |
| Kev nkees nkees | Xav tias nkees. |
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Factor IX yog ib qho kev txhaj tshuaj protein tshwj xeeb uas pab cov ntshav txhaws rau cov neeg uas muaj kab mob xws li hemophilia B.
- Ua ntej noj cov tshuaj no, qhia rau koj tus kws kho mob txog tag nrho koj cov mob, kev ua xua, thiab lwm yam tshuaj uas koj noj.
- Yog koj noj tshuaj hauv tsev, ua raws li cov lus qhia kom meej. Pov tseg cov koob txhaj tshuaj uas siv lawm kom zoo.
- Yog koj muaj cov tsos mob xws li mob hauv siab, ua pa nyuaj, lossis ua xua hnyav, nrhiav kev pab kho mob tam sim ntawd.
- Yog koj yog ib tug neeg mob ntshav dawb (hemophiliac), nqa daim npav ID nrog koj cov ntaub ntawv tas li.
- Cov tshuaj no tsuas yog rau koj xwb. Tsis txhob muab rau lwm tus.
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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