Koj puas xav txog seb yuav muaj li cas yog tias peb lub cev tiv thaiv kab mob, lub cev tiv thaiv kab mob, es tsis yog tiv thaiv peb ntawm kab mob, pib tawm tsam peb lub cev? Qhov ntawd yog ib qho mob tsis zoo, tab sis tsis tshua muaj, uas peb yuav tham txog hnub no yog aHUS, lossis Atypical Hemolytic Uremic Syndrome . Qhov no yog thaum peb cov hlab ntsha raug puas tsuaj, cov ntshav me me tsim, thiab cov ntshav ntws mus rau cov kab mob tseem ceeb xws li lub raum txo qis. Qhov mob no feem ntau yog tshwm sim los ntawm kev hloov pauv caj ces .
Feem ntau cov kws kho mob kuaj pom tias koj muaj aHUS thaum koj muaj tag nrho peb yam mob no ua ke:
- Microangiopathic hemolytic anemia : Qhov no txhais tau tias koj cov qe ntshav liab raug rhuav tshem sai dhau, yog li koj lub cev tsis tuaj yeem tsim cov qe ntshav tshiab los hloov lawv.
- Thrombocytopenia : Qhov no yog qhov txo qis ntawm cov platelets, uas pab cov ntshav txhaws.
- Kev raug mob raum sai sai : Qhov no yog ib hom kev ua tsis tau haujlwm raum, tab sis qee zaum nws tuaj yeem kho tau.
Tag nrho peb yam mob no tuaj yeem tshwm sim tib lub sijhawm, lossis lawv tuaj yeem ua rau muaj lwm yam mob hnyav dua.
Qhov txawv ntawm HUS ib txwm thiab aHUS no yog dab tsi?
Yav dhau los, tus mob no hu ua HUS (Hemolytic Uremic Syndrome) tau muab faib ua ob hom loj.
- Feem ntau HUS (HUS cuam tshuam nrog raws plab): Qhov no feem ntau nrog raws plab. Nws yog tshwm sim los ntawm ib hom kab mob hu ua E. coli . Ib txhia neeg kuj hu nws ua STEC-HUS .
- Tus mob aHUS uas peb tab tom tham txog hnub no (Atypical HUS): Qhov no tsis yog hom mob raws plab uas pom. Feem ntau, kwv yees li ib nrab ntawm cov neeg uas muaj tus mob aHUS, nws yog los ntawm kev hloov pauv caj ces, kev hloov pauv caj ces . Cov kws kho mob qee zaum hu tus mob no ua complement-mediated thrombotic microangiopathy (CM-TMA) .
Cov yam ua rau aHUS tshwm sim yog dab tsi?
Hais yooj yim xwb, tsis yog txhua tus neeg uas muaj kev hloov pauv caj ces yuav muaj aHUS. Feem ntau, nws yog ua rau, lossis ua rau hnyav dua, los ntawm lwm yam mob nkeeg. Xav txog cov no:
- Lub sijhawm cev xeeb tub
- Mob qog noj ntshav
- Ntau yam kab mob sib kis
- Qee cov tshuaj, tshwj xeeb tshaj yog cov tshuaj chemotherapy , cov tshuaj tiv thaiv kab mob , cov tshuaj thinning ntshav , cov tshuaj tiv thaiv kev xeeb tub , thiab qee cov tshuaj tiv thaiv kev o .
Cov tsos mob ntawm aHUS yog dab tsi?
Tam sim no cia peb saib seb tus neeg uas muaj aHUS muaj cov tsos mob li cas. Tej zaum koj yuav muaj ntau yam ntawm cov no, lossis koj yuav muaj cov tsos mob uas maj mam tshwm sim.
- Xav tias nkees txhua lub sijhawm (Fatigue)
- Tawv nqaij daj ntseg (Pallor)
- Xeev siab los yog ntuav
- Cov zis tso tawm tsawg dua
- Ntshav nyob rau hauv cov zis
- Ntshav siab (Tshuaj ntshav siab)
- Ua pa nyuaj (Dyspnea)
- Kev o
- Kev tsis meej pem , kev nco tsis tau zoo
- Ua npaws
Feem ntau cov neeg tsis muaj tag nrho cov tsos mob no ib zaug. Qee zaum lawv maj mam tshwm sim, me ntsis zuj zus. Tej zaum koj yuav xav tias koj tau raug kev txom nyem los ntawm ib yam dab tsi tau ib ntus, tab sis koj tsis tuaj yeem paub tias nws yog dab tsi. Cov tsos mob ntawm lub paj hlwb no, uas yog qhov kev tsis meej pem uas kuv tau hais ua ntej, tsis tshwm sim rau txhua tus, nws tsis tshua muaj tshwm sim.
Dab tsi ua rau muaj aHUS tiag tiag?
Qhov ua rau muaj aHUS yog kev hloov pauv hauv peb cov DNA (genetic mutation) , lossis kev tsim cov autoantibodies uas tawm tsam peb cov cell tawm tsam 'complement proteins' hauv peb lub cev tiv thaiv kab mob . Cov kev hloov pauv genetic no tuaj yeem tau txais los ntawm peb niam peb txiv, lossis lawv tuaj yeem tshwm sim yam tsis tau npaj tseg. Cov kev hloov pauv genetic no cuam tshuam rau kev ua haujlwm ntawm cov protein hu ua 'complement factors' .
Xav txog cov 'complement factors' no ua cov tub rog me me uas pab peb cov hlwb tiv thaiv kab mob. Ib yam li cov khoom noj uas muaj ntxhiab tsw qab, cov protein no nrhiav cov kab mob phem (xws li cov kab mob me me thiab cov kab mob virus) thiab cim lawv kom lwm cov hlwb tiv thaiv kab mob tuaj yeem 'noj' lawv. Cov feem ntau cuam tshuam rau hauv aHUS yog cov complement factors H, I, 3, thiab B.
Piv txwv li, lub luag haujlwm ntawm complement factor H yog los tiv thaiv cov hlwb noj qab haus huv hauv peb lub cev thiab kom lwm cov complement factors tsis txhob ua haujlwm thaum lawv tsis xav tau. Tam sim no xav txog seb yuav ua li cas yog tias qhov complement factor H no tsis ua haujlwm zoo (uas yog, yog tias muaj kev hloov pauv hauv CFH gene) ? Peb cov hlwb tsis tau txais kev tiv thaiv uas lawv xav tau. Tom qab ntawd ntawm no yog cov yam uas tshwm sim:
- Peb cov qe ntshav tiv thaiv kab mob ua yuam kev tawm tsam thiab ua puas rau cov qe ntshav uas nyob sab hauv peb cov hlab ntsha (cov qe ntshav endothelial) .
- Cov ntshav platelets sib sau ua ke nyob ib puag ncig qhov kev puas tsuaj no thiab ua ib qho ntshav txhaws. Qhov no thaiv cov hlab ntsha.
- Qhov no ua rau cov ntshav ntws mus rau peb cov kabmob txo qis, ua rau lawv puas tsuaj thiab lawv txoj haujlwm poob qis. Lub raum yog qhov raug cuam tshuam ntau tshaj plaws.
- Cov ntshav txhaws no ua rau lwm cov qe ntshav uas hla dhau lawv puas tsuaj, ua rau muaj mob hu ua hemolytic anemia .
Koj paub li cas yog tias koj muaj aHUS?
Feem ntau tus kws kho mob yuav kuaj mob aHUS raws li koj cov tsos mob thiab cov txiaj ntsig ntawm kev kuaj mob uas kuaj xyuas koj cov ntshav thiab koj cov kabmob ua haujlwm li cas. Lawv kuj tseem yuav ua kev kuaj mob kom paub tseeb tias koj tsis muaj lwm yam kab mob uas ua rau muaj cov tsos mob zoo sib xws (xws li STEC-HUS uas tau hais los saum toj no).
Cov kev kuaj twg siv los kuaj mob aHUS?
Tej zaum koj yuav tau ua cov kev ntsuam xyuas zoo li no:
- Kev kuaj ntshav: Kev suav ntshav tag nrho (CBC) , kev kuaj mob raum, thiab lwm yam.
- Kev kuaj noob caj noob ces : Qhov no kuaj xyuas seb puas muaj kev hloov pauv noob caj noob ces.
- Kev kuaj quav : Tshawb xyuas seb puas muaj kab mob xws li E. coli.
- Kev kuaj lub raum : Muab ib daim me me ntawm lub raum los kuaj.
- Kev kuaj duab : xws li ultrasound lossis CT scan .
Yuav kho tus mob aHUS li cas?
Kev kho mob rau aHUS nyob ntawm seb qhov ua rau mob yog dab tsi thiab qhov mob hnyav npaum li cas. Yog tias koj muaj hom aHUS uas tsis hnyav heev, koj tus kws kho mob yuav saib xyuas koj thiab muab kev pab txhawb nqa , xws li kev hloov ntshav lossis tshuaj kho mob ntshav siab, yog tias xav tau.
Txawm li cas los xij, yog tias koj muaj aHUS hnyav heev, koj yuav xav tau kev kho mob zoo li no:
- Kev pauv cov ntshav kho mob : Hauv qhov no, cov ntshav plasma raug tshem tawm thiab muab cov ntshav tshiab.
- Rituximab lossis lwm yam tshuaj siv los kho cov kab mob autoimmune.
- Kev ntxuav ntshav : Ib txoj kev ntxuav cov ntshav thaum lub raum tsis ua haujlwm zoo.
- Kev hloov raum : Qhov no tsuas yog ua rau cov mob hnyav heev xwb.
Rau cov neeg uas muaj cov kev hloov pauv ntawm cov noob caj noob ces 'complement' uas tau hais los saum toj no, cov kws kho mob feem ntau siv cov tshuaj hu ua eculizumab los kho aHUS. Eculizumab ua haujlwm los ntawm kev thaiv qee cov protein complement, tiv thaiv koj lub cev tiv thaiv kab mob kom tsis txhob ua rau koj cov hlab ntsha puas tsuaj.
Puas muaj tej yam tshwm sim ntawm kev kho mob?
Thaum siv Eculizumab , koj yuav tsis muaj kev tiv thaiv ntau los ntawm cov tshuaj tiv thaiv kab mob meningococcal thiab pneumococcal . Yog li ntawd, yog tias ua tau, koj tus kws kho mob yuav qhia koj kom txhaj cov tshuaj tiv thaiv no ua ntej pib siv Eculizumab .
Yav tom ntej yuav zoo li cas rau ib tus neeg uas muaj aHUS?
Yog tias tus mob no raug kuaj pom thiab kho thaum ntxov, cov mob xws li kev raug mob raum los ntawm aHUS tuaj yeem tswj tau zoo. Tej zaum koj yuav muaj lub sijhawm zoo siab yam tsis muaj tsos mob. Txawm li cas los xij, yog tias muaj lwm yam ua rau aHUS rov qab los, nws tuaj yeem ua rau tuag taus dua.
Yav dhau los, kwv yees li ib nrab, lossis 50%, ntawm cov neeg uas muaj aHUS tau mob raum theem kawg (ESKD) , uas txhais tau tias lawv lub raum tsis ua haujlwm zoo kiag li.
Tiam sis muaj xov xwm zoo! Cov kev tshawb fawb tshiab qhia meej meej tias qhov kev pheej hmoo ntawm ESKD tau raug txo qis ntau rau cov neeg uas muaj aHUS ua tsaug rau kev kho mob Eculizumab .
Kev pheej hmoo ntawm kev tuag los ntawm aHUS yog dab tsi?
Cov mob hnyav ntawm aHUS, xws li lub raum tsis ua haujlwm lossis puas tsuaj rau lwm yam kabmob, yog qhov hnyav heev. Hauv cov mob hnyav li no, muaj kev pheej hmoo ntawm kev tuag txog li 15%.
Puas tiv thaiv tau tus kab mob aHUS?
Vim tias feem ntau nws yog los ntawm kev hloov pauv caj ces, aHUS feem ntau tsis tuaj yeem tiv thaiv tau. Txawm li cas los xij, yog tias koj muaj feem yuav mob hnyav, koj yuav zam tau qee yam uas ua rau nws mob .
Kuv yuav saib xyuas kuv tus kheej li cas?
Yog tias koj tau kuaj pom tias muaj tus kab mob aHUS, nrog koj tus kws kho mob tham txog tej yam uas yuav ua rau tus mob hnyav zuj zus. Nws tseem ceeb heev uas yuav tsum paub cov tsos mob ntawm tus mob hnyav.
Kuv yuav tsum mus ntsib kws kho mob thaum twg?
Yog tias koj xav tias koj qaug zog lossis nkees ntev heev - zoo li koj muaj mob ntev uas yuav tsis ploj mus - nrog koj tus kws kho mob tham. Tsis tas li ntawd, tham txog lwm yam tsos mob uas koj tau muaj tsis ntev los no, xws li kev hloov pauv hauv koj tus cwj pwm mus rau chav dej.
Kuv yuav tsum mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) thaum twg?
Yog koj muaj cov tsos mob hnyav no, mus rau chav kho mob ceev tam sim ntawd:
- Cov zis tso tawm tsawg heev.
- Kev tsis meej pem lossis kev nco qab hloov pauv.
- o hnyav heev.
- Ua pa nyuaj heev.
Kuv yuav tsum nug tus kws kho mob li cas?
Tej zaum yuav pab tau yog koj nug koj tus kws kho mob cov lus nug zoo li no:
- Kuv tus mob hnyav npaum li cas?
- Dab tsi ua rau qhov no nce siab zuj zus?
- Kuv puas tuaj yeem tiv thaiv cov xwm txheej zoo li no yav tom ntej?
- Kuv yuav tsum saib xyuas cov tsos mob twg?
- Kuv yuav tsum rov qab los ntsib koj dua thaum twg?
Tus mob no hu ua aHUS ntau npaum li cas?
aHUS tsis tshua muaj.Ib qho mob nkeeg. Nws cuam tshuam rau kwv yees li ib ntawm tsib puas txhiab tus neeg. Nws feem ntau tshwm sim rau cov neeg laus dua li cov menyuam yaus.
Thaum kawg, tej yam uas yuav tsum nco ntsoov
Kev nrhiav pom tias koj lossis koj tus menyuam muaj mob caj ces tuaj yeem ua rau koj lub neej hloov pauv. aHUS yog ib yam mob hnyav uas ua rau cov ntshav txhaws thiab ua rau cov kabmob puas tsuaj. Txawm li cas los xij, kev tsim tshuaj tshiab hu ua eculizumab tau ua rau cov neeg uas muaj aHUS muaj sia nyob zoo dua. Yog tias koj tau kuaj pom tias muaj aHUS, nrog koj tus kws kho mob tham txog cov hau kev kom tsis txhob muaj cov teeb meem thiab txo koj txoj kev pheej hmoo ntawm kev mob hnyav. Nws tuaj yeem pab koj nkag siab txog yam koj yuav tsum ua kom noj qab haus huv.
aHUS , kab mob raum, cov ntshav txhaws, lub cev tiv thaiv kab mob, kev hloov pauv caj ces, ntshav tsis txaus, Eculizumab
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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