Thaum koj muaj ib qho qhov txhab me me ntawm koj lub cev, lossis thaum koj raug rub ib tug hniav, puas yog qhov ntshav tseem ntws mus tsis tu ncua? Los yog koj puas muaj qee zaum muaj cov qhov mob xiav ntawm koj lub cev yam tsis tau ntaus qhov twg? Koj puas pom cov qhov mob thoob plaws koj lub cev, tshwj xeeb tshaj yog thaum koj tus me nyuam pib nkag lossis taug kev? Yog tias tej yam zoo li no tshwm sim, qhov ua rau muaj tej zaum yuav yog ib qho mob hu ua hemophilia . Tsis txhob ntshai thaum koj hnov lub npe no. Nrog kev kho mob zoo , koj tuaj yeem ua neej nyob zoo li qub. Cia peb tham txog qhov no kom meej thiab yooj yim hnub no.
Yog hais yooj yim xwb, Hemophilia A yog dab tsi?
Hais yooj yim xwb, Hemophilia A yog ib yam mob uas peb cov ntshav tsis khov zoo. Feem ntau, thaum peb raug mob, peb cov ntshav yuav khov kom tsis txhob los ntshav. Qhov no yog pab los ntawm cov protein tshwj xeeb hauv peb cov ntshav. Peb hu cov no ua "cov yam ua rau cov ntshav khov."
Ib tug neeg uas muaj mob hemophilia A tsis tsim cov tshuaj clotting factor Factor VIII txaus. Qhov hnyav ntawm tus kab mob yog txiav txim siab los ntawm qib uas cov protein Factor VIII no raug txo qis. Yog li ntawd, nws muab faib ua peb ntu:
- Kab mob hemophilia me me: Cov qib Factor VIII muaj nyob rau qee qhov.
- Kab mob hemophilia nruab nrab: Cov qib Factor VIII qis heev.
- Kab mob hemophilia hnyav: Cov qib Factor VIII qis heev lossis tsis muaj.
Feem ntau, qhov no yog ib yam kab mob uas muaj los ntawm noob caj noob ces uas kis tau los ntawm tsev neeg. Txawm li cas los xij, kwv yees li ib feem peb ntawm cov neeg mob, ib tus neeg tshiab tuaj yeem muaj tus kab mob yam tsis muaj leej twg hauv tsev neeg muaj tus kab mob no.
Dab tsi ua rau muaj tus kab mob hemophilia?
Qhov no yog ib yam dab tsi uas peb tau txais los ntawm cov noob caj noob ces. Xav txog nws, txhua yam ntxwv ntawm peb lub cev yog txiav txim siab los ntawm cov noob caj noob ces. Ib tug poj niam muaj ob lub X chromosomes (XX), thaum ib tug txiv neej muaj ib lub X chromosome thiab ib lub Y chromosome (XY).
Qhov teeb meem ntawm cov noob caj noob ces uas cuam tshuam nrog hemophilia nyob ntawm X chromosome .
Yog li ntawd, yog tias leej niam yog tus "tuav" cov noob caj noob ces tsis zoo no, feem ntau nws tsis qhia cov tsos mob. Vim tias nws lwm tus X chromosome noj qab haus huv ua cov protein factor VIII tsim nyog. Tab sis yog tias nws tus tub tau txais cov X chromosome tsis zoo no, tus tub ntawd yuav mob hemophilia. Vim tias tus tub tsuas muaj ib qho X chromosome xwb. Vim li no, hemophilia feem ntau tshwm sim rau cov tub hluas dua li cov ntxhais.
Tsis tshua muaj neeg laus uas muaj hnub nyoog ntawm 60 thiab 80 xyoo tuaj yeem mob hemophilia. Nws tshwm sim thaum lub cev tiv thaiv kab mob tawm tsam cov ntshav txhaws zoo. Nws kuj tseem tuaj yeem tshwm sim thaum cev xeeb tub, nrog rau mob qog noj ntshav , thiab nrog rau lwm yam mob autoimmune .
Cov tsos mob ntawm tus kab mob hemophilia yog dab tsi?
Cov tsos mob nyob ntawm seb koj tus mob puas tsis hnyav, nruab nrab, lossis hnyav.
| Qib ntawm tus kab mob | Cov yam ntxwv pom tseeb |
|---|---|
| Kab mob ntshav tsis txaus | Feem ntau, kev los ntshav ntau tsuas yog tshwm sim tom qab phais mob, rho hniav tawm, yug menyuam, lossis muaj xwm txheej loj heev. Ib txhia neeg tsis paub tias lawv muaj tus kab mob no kom txog thaum lawv loj hlob tuaj. |
| Kab mob ntshav tsis txaus | - Thaum raug mob, muaj ntshav ntau dhau. - Qee zaum los ntshav tsis muaj laj thawj. - Lub cev mob yooj yim thiab hloov xiav. - Thaum koj txhaj tshuaj tiv thaiv kab mob, nws yuav siv sijhawm ntev heev los ntshav. |
| Kab mob ntshav liab hnyav heev | Feem ntau los ntshav txawm tias tsis raug mob los xij. Kev los ntshav tuaj yeem tshwm sim tshwj xeeb tshaj yog rau hauv cov pob qij txha thiab cov leeg . Qhov no mob heev. |
Cov cim ceeb toom ntawm kev los ntshav hauv lub hlwb
Yog tias ib tug neeg uas muaj tus kab mob hemophilia hnyav txawm tias raug mob me me rau ntawm lub taub hau, qhov no tuaj yeem ua rau ntshav ntws mus rau hauv lub hlwb. Qhov no yog qhov xwm txheej ceev heev. Yog tias koj raug mob taub hau thiab muaj ib qho ntawm cov tsos mob hauv qab no, hu rau koj tus kws kho mob tam sim ntawd lossis mus rau chav kho mob ceev (ETU) ze tshaj plaws.
- Mob taub hau hnyav tas li
- Ntuav
- Kev tsaug zog ntau zaus los yog qaug zog heev
- Tsis muaj zog tam sim ntawd los yog nyuaj rau kev taug kev
- pom ob sab
- Qaug dab peg
Yuav kuaj mob li cas?
Yog tias ib tug neeg hauv koj tsev neeg muaj tus kab mob hemophilia, koj tuaj yeem coj koj tus menyuam mus kuaj mob thaum koj cev xeeb tub. Txawm li cas los xij, muaj qee qhov kev pheej hmoo cuam tshuam nrog cov kev kuaj no, yog li koj yuav tsum tham nrog koj tus kws kho mob.
Feem ntau cov menyuam yaus uas muaj tus kab mob hemophilia loj heev yuav kuaj pom tias muaj tus kab mob no hauv thawj xyoo ntawm lawv lub neej. Yog tias koj tus menyuam pib dov thiab pib nkag thiab pom cov qhov txhab ntawm lawv lub cev, nrog koj tus kws kho mob tham txog qhov no.
Tus kws kho mob yuav nug koj cov lus nug zoo li no:
- Cov qhov txhab thiab los ntshav no tshwm sim li cas?
- Qhov kev los ntshav tau mus ntev npaum li cas lawm?
- Puas muaj tshuaj rau cov menyuam yaus noj?
- Puas muaj leej twg hauv koj tsev neeg muaj teeb meem ntshav txhaws?
Tom qab ntawd, yuav muaj ntau qhov kev kuaj ntshav los xyuas kom meej tias muaj tus kab mob no. Koj kuj tseem yuav raug xa mus rau kws kho mob ntshav.
| Lub Npe Xeem | Koj pom dab tsi hauv qhov no? |
|---|---|
| Kev suav ntshav tag nrho (CBC) | Yuav kuaj xyuas cov hom qe ntshav hauv cov ntshav thiab qib hemoglobin. Qhov no yuav pab txiav txim seb puas muaj ntshav tsis txaus vim los ntawm kev los ntshav. |
| Kev ntsuam xyuas PT thiab aPTT | Nws ntsuas seb nws siv sijhawm ntev npaum li cas rau cov ntshav kom khov. Tus nqi aPTT feem ntau siab dua hauv cov neeg mob hemophilia. |
| Kev ntsuam xyuas Factor VIII thiab Factor IX | Lawv ntsuas seb cov protein no muaj pes tsawg nyob hauv cov ntshav. Yog tias factor VIII qis, ces yog hemophilia A. |
| Kev Kuaj Genetic | Qhov kev hloov pauv ntawm cov noob caj noob ces uas ua rau muaj tus kab mob no tuaj yeem txheeb xyuas tau. Yog tias yog ib tug poj niam, kuj tseem tuaj yeem txiav txim siab seb nws puas yog tus nqa tus kab mob no. |
Yuav kho li cas?
Txoj kev kho mob nyob ntawm seb tus kab mob hnyav npaum li cas, koj lub hnub nyoog, thiab koj tus kheej xav tau dab tsi. Lub hom phiaj tseem ceeb ntawm kev kho mob yog hloov cov protein factor VIII uas ploj lawm hauv lub cev. Qhov no hu ua kev kho mob hloov pauv factor . Txawm hais tias qhov no tsis kho tus kab mob tag nrho, nws tuaj yeem pab tswj kev los ntshav thiab cia koj ua neej nyob li qub.
Muaj ob hom kev kho mob:
- Kev Kho Mob Tiv Thaiv: Txhaj tshuaj tiv thaiv kab mob VIII tsis tu ncua raws sijhawm teem tseg kom tiv thaiv kev los ntshav, es tsis txhob tos kom los ntshav . Qhov no tseem ceeb heev rau cov neeg uas muaj kab mob hemophilia hnyav.
- Kev Kho Mob Thaum Xav Tau: Tau txais kev kho mob tsuas yog thaum muaj kev los ntshav xwb .
Muaj ob hom tshuaj tiv thaiv kab mob VIII:
1. Recombinant Factor VIII: Factor tsim tawm hauv chav kuaj mob siv kev tsim kho caj ces. Qhov no yog qhov feem ntau siv niaj hnub no.
2. Cov Tshuaj Uas Tau Los Ntawm Plasma: Cov tshuaj uas tau los ntawm cov ntshav plasma tib neeg.
Cov neeg uas muaj tus kab mob hemophilia A uas tsis hnyav heev mus rau nruab nrab kuj siv tau cov tshuaj hu ua Desmopressin (DDAVP) . Qhov no ua haujlwm los ntawm kev tso cov factor VIII uas khaws cia rau hauv cov ntshav.
Tsis tas li ntawd xwb, cov tshuaj noj xws li Tranexamic Acid, uas tiv thaiv cov ntshav txhaws kom tsis txhob tawg, kuj siv rau hauv cov xwm txheej xws li rho hniav.
Tseem Ceeb: Vim tias ib tug neeg uas muaj tus kab mob hemophilia yuav tsum tau hloov ntshav ntau zaus, nws yog ib qho tseem ceeb heev uas yuav tsum tau txhaj tshuaj tiv thaiv kab mob Hepatitis A thiab B. Nug koj tus kws kho mob txog qhov no.
Koj tswj hwm lub neej txhua hnub li cas?
Thaum nyob nrog hemophilia, koj yuav tsum xav ntxiv me ntsis txog kev nyab xeeb.
- Ua kom nquag: Kev tawm dag zog ua rau cov leeg muaj zog. Cov leeg muaj zog muab kev tiv thaiv zoo rau cov pob qij txha. Txawm li cas los xij, tsis txhob ua si nawv xws li rugby thiab boxing. Ua luam dej, taug kev, thiab caij tsheb kauj vab (nrog lub kaus mom hlau) yog cov kev xaiv zoo. Tham nrog koj tus kws kho mob txog cov kev ua ub no uas tsim nyog rau koj.
- Tiv Thaiv Cov Menyuam: Yog tias koj muaj ib tug menyuam yaus me, hnav cov ntaub qhwv hauv caug, cov ntaub qhwv lub luj tshib, thiab lub kaus mom hlau thaum ua si. Tiv thaiv koj tus kheej ntawm cov rooj tog ntse hauv koj lub tsev.
- Kev noj qab haus huv ntawm cov hniav:Ua kom koj cov hniav huv si. Txhuam koj cov hniav txhua hnub. Qhov no yuav pab txo qhov xav tau rho hniav thiab kho hniav loj. Ua ntej koj mus ntsib kws kho hniav, nco ntsoov qhia rau nws tias koj muaj mob hemophilia.
- Cov Tshuaj Uas Tsis Txhob Noj: Cov tshuaj loog mob xws li aspirin thiab NSAIDs (piv txwv li, ibuprofen, diclofenac) tuaj yeem ua rau cov ntshav tsis txhob khov. Tsis txhob noj tshuaj yam tsis tau sab laj nrog koj tus kws kho mob.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Hemophilia A yog ib yam kab mob caj ces uas tshwm sim los ntawm qhov tsis txaus ntawm Factor VIII protein, uas yog qhov tsim nyog rau kev txhaws ntshav.
- Qhov no feem ntau pom muaj rau cov tub hluas, tab sis cov poj niam tuaj yeem yog cov neeg nqa tus kab mob no.
- Cov tsos mob tseem ceeb yog los ntshav ntau dhau txawm tias yog raug mob me me thiab mob nqaij tsis tsim nyog.
- Yog koj raug mob taub hau thiab muaj cov tsos mob xws li mob taub hau hnyav, ntuav, lossis tsaug zog, ces qhov no yog qhov xwm txheej ceev. Nrhiav kev kho mob tam sim ntawd.
- Yog tias muaj kev kho mob zoo (Factor Replacement Therapy) thiab muaj kev ua neej nyob nyab xeeb, cov neeg uas muaj mob hemophilia tuaj yeem ua neej tau zoo thiab nquag.
- Ua ntej koj phais lossis kho hniav, nco ntsoov tham txog txhua yam tshuaj uas koj noj nrog koj tus kws kho mob.
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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