Xav txog seb, tsis muaj laj thawj dab tsi, koj pheej kub taub hau, mob pob qij txha, thiab pob khaus me me thoob plaws koj lub cev. Cov no ploj mus li ob lossis peb hnub, tom qab ntawd rov tshwm sim dua. Yog tias muaj tej yam zoo li no tshwm sim rau koj lossis koj tus menyuam, qhov ua rau muaj tej zaum yog ib yam kab mob tsis tshua muaj uas ntau tus neeg tsis tau hnov txog. Niaj hnub no peb tab tom tham txog ib yam kab mob zoo li no, CAPS.
Lub ntsiab lus ntawm CAPS yog dab tsi?
Hais yooj yim xwb, Cryopyrin-Associated Periodic Syndromes, lossis CAPS, yog ib pawg kab mob caj ces tsawg heev uas cuam tshuam rau peb lub cev tiv thaiv kab mob. Feem ntau, peb lub cev tiv thaiv kab mob tiv thaiv peb ntawm cov kab mob thiab lwm yam kab mob. Txawm li cas los xij, hauv qhov mob CAPS no, vim muaj qhov tsis zoo hauv lub cev tiv thaiv kab mob nws tus kheej, nws pib tawm tsam peb lub cev. Qhov no hu ua 'kab mob autoinflammatory' hauv kev kho mob. Qhov no ua rau muaj kev o tsis tsim nyog hauv lub cev, ua rau muaj cov tsos mob xws li tawv nqaij tawm pob, kub taub hau, mob pob qij txha thiab o, thiab qhov muag liab.
Muaj peb hom CAPS tseem ceeb. Cia peb saib seb lawv yog dab tsi.
| Lub Npe ntawm Tus Mob | Kev piav qhia thiab qhov hnyav |
|---|---|
| Kab mob khaub thuas hauv tsev neeg (FCAS) | Qhov no yog qhov mob hnyav tsawg tshaj plaws ntawm peb hom kab mob no. Raws li lub npe qhia, cov tsos mob tshwm sim los ntawm kev raug cua txias. Cov tsos mob tseem ceeb yog kub taub hau, mob pob qij txha, thiab mob tawv nqaij. Feem ntau nws tsis ua rau lub cev puas tsuaj mus sij hawm ntev. |
| Muckle-Wells Syndrome (MWS) | Qhov no hnyav dua li FCAS me ntsis. Cov tsos mob tsis yog tsuas yog ua rau mob khaub thuas xwb, tab sis kuj yog los ntawm kev ntxhov siab thiab kev tawm dag zog . Cov tsos mob tuaj yeem hnyav heev, thiab qee tus neeg kuj tseem yuav hnov lus tsis zoo . |
| Kab Mob Plab Hnyuv Ntau Qhov System (NOMID) Rau Cov Menyuam Mos Tshiab | Qhov no yog qhov loj tshaj plaws thiab tsis tshua muaj ntawm cov kab mob no.Hom. Qhov no pib thaum tus menyuam yug los. Nws ua rau muaj kev o ntawm ntau yam kabmob ntawm lub cev. Nws tseem hu ua CINCA. Yog tias tsis kho kom zoo, nws tuaj yeem ua rau lub hlwb, qhov muag, thiab lwm yam kabmob puas tsuaj loj heev . |
Dab tsi ua rau CAPS?
Qhov laj thawj tseem ceeb rau qhov no yog kev hloov pauv hauv ib lub noob caj noob ces hauv peb lub cev. Yog hais kom meej, tus kab mob no yog tshwm sim los ntawm kev hloov pauv hauv lub noob caj noob ces hu ua 'NLRP3' .
Xav txog cov noob caj noob ces 'NLRP3' no ua ib daim phiaj uas qhia peb lub cev kom ua ib qho protein hu ua 'cryopyrin'. Feem ntau, cov protein 'cryopyrin' no pab peb lub cev tsim ib yam khoom hu ua 'interleukin-1 (IL-1)', uas pab peb lub cev tawm tsam cov kab mob.
Tiamsis vim tias tus noob 'NLRP3' hauv ib tus neeg uas muaj CAPS hloov pauv, cov protein 'cryopyrin' kuj tsis ua haujlwm zoo. Nws ib txwm qhia lub cev kom tsim 'IL-1' ntau dhau. Qhov kev tsim tawm ntawm 'IL-1' ntau dhau no yog qhov ua rau muaj kev o tsis tsim nyog hauv lub cev thiab ua rau muaj cov tsos mob ntawm CAPS.
Kab mob no yuav tshwm sim tau yog tias tus menyuam tau txais cov noob caj noob ces uas hloov pauv los ntawm ib tug niam txiv xwb, tsis hais leej niam los yog leej txiv. Qee zaum, cov noob caj noob ces yuav hloov pauv tau yam tsis tau npaj tseg thaum tseem nyob hauv plab, tsis muaj niam txiv.
Cov tsos mob yog dab tsi?
Cov tsos mob tseem ceeb thiab feem ntau ntawm CAPS yog pob khaus uas zoo li cov pob me me, tsis khaus thoob plaws lub cev . Qhov no feem ntau pom thaum yug los. Ib txhia neeg muaj cov qhov txhab no tas li, tab sis lawv hnyav dua thaum muaj mob hnyav. Lwm cov tsos mob sib txawv nyob ntawm hom CAPS uas koj muaj.
Cov tsos mob uas pom tau hauv FCAS
Cov tsos mob no feem ntau kav ntev li 1-2 hnub.
- Ua npaws
- Qhov muag o
- Mob khaub thuas
- Mob pob qij txha
- Xeev siab
- Mob taub hau
Cov tsos mob pom hauv MWS
Cov tsos mob no tuaj thiab mus. Lawv tuaj yeem kav ntev li 1-3 hnub ib zaug.
- Mob pob khaus ntawm daim tawv nqaij
- Kub taub hau thiab mob khaub thuas
- Qhov muag liab
- Mob pob qij txha
- Mob taub hau hnyav heev
- Kev hnov lus tsis zoo (cov menyuam yaus uas muaj MWS yuav hnov lus tsis zoo tag nrho lossis ib feem thaum lawv loj hlob tuaj)
- Mob plab
Cov tsos mob pom hauv NOMID
Cov no yog cov tsos mob hnyav tshaj plaws.
- Mob taub hau hnyav heev
- Qhov muag loj
- Mob pob qij txha thiab o
- Ntuav
- Kev tsis pom kev
- Kev hnov lus tsis zoo
Tseem Ceeb: Yog tias NOMID tsis raug kho kom zoo, cov protein hu ua amyloid tuaj yeem tso rau hauv cov kabmob tseem ceeb xws li lub raum thiab cov pob qij txha, ua rau muaj kev puas tsuaj loj heev raws sijhawm.
Yuav kuaj mob li cas?
Thaum koj mus ntsib koj tus kws kho mob uas muaj cov tsos mob no, nws yuav xub nug koj txog koj keeb kwm kev mob nkeeg thiab koj tsev neeg. Tom qab ntawd, lawv yuav kuaj koj thiab, yog tias tsim nyog, yuav xa koj mus kuaj qee yam, xws li:
- Kev kuaj ntshav thiab zis: Cov kev kuaj no nrhiav cov qe ntshav dawb thiab C-reactive protein ntau ntxiv, uas yog cov cim qhia txog kev o, thiab rau cov protein ntau dhau hauv cov zis.
- Kev kuaj tawv nqaij: Yuav muab ib qho qauv me me ntawm koj daim tawv nqaij coj mus kuaj hauv qab lub tshuab microscope.
- Kev kuaj noob caj noob ces: Qhov kev kuaj no tuaj yeem lees paub seb koj puas muaj kev hloov pauv hauv koj cov noob caj noob ces NLRP3. Txawm li cas los xij, qee zaum cov neeg uas muaj CAPS yuav muaj cov noob caj noob ces no ib txwm muaj.
- Kev kuaj qhov muag thiab pob ntseg: Cov kev kuaj no yog ua los saib seb koj qhov muag lossis pob ntseg puas raug cuam tshuam.
- Kev tho qhov mob ntawm lub duav: Yuav muab me me cov kua dej ntawm tus txha caj qaum los ntawm cov hlab ntsha hauv qab thiab kuaj seb puas muaj cov cim qhia tias mob.
- Kev luam theej duab MRI: Qhov no tuaj yeem thaij duab kom ntxaws txog cov qauv hauv lub hlwb thiab pob ntseg kom pom seb puas muaj kev hloov pauv.
Cov lus nug uas yuav tsum nug tus kws kho mob
Thaum koj mus ntsib kws kho mob, nws yog ib lub tswv yim zoo kom sau tej lus nug uas koj muaj rau ntawm daim ntawv. Ua li ntawd, koj yuav tsis hnov qab dab tsi li. Koj tuaj yeem nug cov lus nug zoo li no:
- Kuv (lossis kuv tus menyuam) muaj hom CAPS twg?
- Tej yam mob uas kuv muaj yuav ua rau muaj cov tsos mob dab tsi?
- Koj pom zoo kom muaj kev kho mob dab tsi? Lawv yuav pab kuv li cas?
- Puas muaj tej yam tshwm sim ntawm kev kho mob?
- Kuv ua tau dab tsi hauv tsev kom txo cov tsos mob?
- Kuv yuav tsum tau ua dab tsi ntxiv? Kuv yuav tsum tau ua thaum twg?
- Kuv puas yuav tsum tau mus ntsib tus kws pab tswv yim txog kev hloov pauv caj ces?
Cov kev kho mob yog dab tsi?
Nws yog ib qho tseem ceeb heev uas yuav tsum pib kho tus kab mob no sai li sai tau, vim tias thaum lub qhov muag, pob ntseg, pob txha, lossis lub hlwb puas lawm, nws nyuaj heev rau kho kom rov qab zoo li qub.
Kev kho mob tseem ceeb yog cov tshuaj uas thaiv lub cev tsis pub tsim cov tshuaj hu ua IL-1 ntau dhau. Cov tshuaj no tswj kev o.
- Anakinra (Kineret)
- Canakinumab (Ilaris)
- Rilonacept (Arcalyst)
Ntxiv rau cov no, koj tus kws kho mob kuj tseem yuav pom zoo lwm yam kev kho mob, xws li:
- Hnav cov splints rau qhov mob pob qij txha thiab o
- Kev kho lub cev
- Cov tshuaj xws li NSAIDs, steroids, lossis methotrexate kom txo qhov kub taub hau thiab o
- Cov khoom siv pab hnov lus rau cov neeg tsis hnov lus zoo
- Kev phais yog tias cov pob qij txha raug puas tsuaj
Koj yuav saib xyuas koj tus kheej li cas?
Nrog rau kev kho mob, kev hloov me me rau koj txoj kev ua neej tuaj yeem pab tau ntau yam hauv kev tswj cov tsos mob.
- Tsis txhob mob khaub thuas: Yog tias koj muaj mob zoo li FCAS, huab cua txias tuaj yeem ua rau koj cov tsos mob hnyav dua. Yog li sim nyob deb ntawm tej yam xws li nyob hauv chav AC thiab nyob hauv thaj chaw txias.
- Txo kev ntxhov siab: Tej yam xws li kev xav, kev ua pa tob tob, thiab yoga tuaj yeem pab tau ntau yam nrog qhov no.
- Lub neej noj qab nyob zoo:
- Pw tsaug zog zoo.
- Noj zaub mov kom muaj txiaj ntsig zoo.
- Tsis txhob haus luam yeeb, haus cawv, thiab cov khoom noj ua tiav lawm.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- CAPS yog ib qho mob tsis tshua muaj, uas yog los ntawm caj ces uas tshwm sim los ntawm qhov tsis zoo ntawm lub cev tiv thaiv kab mob.
- Nws cov tsos mob tseem ceeb yog kub taub hau rov tshwm sim, cov qhov txhab ntawm daim tawv nqaij uas tsis khaus, thiab mob pob qij txha.
- Qhov no yog tshwm sim los ntawm kev hloov pauv hauv cov noob hu ua
NLRP3. - Nws yog ib qho tseem ceeb heev uas yuav tsum kuaj mob thiab pib kho sai li sai tau kom tsis txhob muaj kev puas tsuaj mus tas li rau lub qhov muag, pob ntseg, thiab lwm yam kabmob.
- Yog koj lossis koj tus menyuam muaj cov tsos mob no, tsis txhob tso tseg thiab mus ntsib koj tus kws kho mob tam sim ntawd kom tau lus qhia.
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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