Koj tus me nyuam puas zoo li nkees tas li? Nws puas tsis nyiam noj ntau? Nws puas tau pom tias nws lub ntsej muag daj dua li lwm tus menyuam? Txawm hais tias cov no zoo li yog tej yam ib txwm muaj, qee zaum yuav muaj ib yam mob tsis tshua muaj uas peb tsis hnov ntau txog. Hnub no peb yuav tham txog ib qho mob tsis tshua muaj, tab sis yog tias koj tswj tau zoo, koj tuaj yeem nyob nrog nws tau zoo. Qhov ntawd yog Diamond-Blackfan Anemia, lossis '(Diamond-Blackfan Anemia - DBA)'.
Hais yooj yim xwb, Diamond-Blackfan Anemia (DBA) yog dab tsi?
Xav txog tias peb muaj ib lub Hoobkas loj hauv peb lub cev uas ua cov ntshav. Peb hu nws ua pob txha . Txoj haujlwm tseem ceeb ntawm lub Hoobkas no yog ua cov qe ntshav liab, cov neeg ua haujlwm me me uas nqa cov pa oxygen thoob plaws peb lub cev. DBA yog ib qho mob uas lub Hoobkas no hu ua pob txha tsis tuaj yeem ua cov qe ntshav liab txaus. Qhov no tsis tshua muaj, txhais tau tias qhov mob no tshwm sim rau kwv yees li ib tus ntawm 500,000 tus menyuam.
Qhov no yog ib qho kev mob caj ces . Qhov no txhais tau tias nws yog tshwm sim los ntawm kev hloov pauv ntawm cov noob caj ces hauv peb lub cev cov hlwb. Qhov no ua rau cov qe ntshav liab hauv lub cev tsawg zuj zus. Peb hu qhov mob no ua anemia , lossis ntshav tsis txaus lossis anemia. DBA yog ib qho mob uas yuav tshwm sim mus ib txhis. Tab sis tsis txhob txhawj, nrog kev kho mob zoo, ntau tus neeg tuaj yeem tswj lawv cov tsos mob thiab ua neej nyob zoo .
Cov tsos mob ntawm ib tus neeg uas muaj DBA yog dab tsi?
Cov tsos mob ntawm DBA yuav txawv ntawm ib tus neeg mus rau ib tus neeg. Ib txhia neeg yuav muaj cov tsos mob me me, thaum lwm tus yuav muaj cov tsos mob hnyav dua. Cia peb saib cov tsos mob tseem ceeb.
| Cov tsos mob | Ib qho lus piav qhia yooj yim |
|---|---|
| qaug zog ntau zaus | Vim tias cov qe ntshav hauv lub cev tsis tau txais cov pa oxygen txaus, koj feem ntau xav tias tsaug zog thiab tsis muaj zog ua dab tsi. |
| Kev daj ntseg ntawm daim tawv nqaij (Pallor) | Daim tawv nqaij, daim di ncauj, thiab cov rau tes zoo li dawb vim tsis muaj cov qe ntshav liab, uas yog lub luag haujlwm rau xim liab ntawm cov ntshav. |
| Lub plawv dhia ceev ceev (Tachycardia) | Lub plawv yuav tsum ua haujlwm hnyav dua kom nqus cov ntshav sai dua thiab muab cov pa oxygen rau lub cev uas nws xav tau. |
| Ua pa nyuaj | Qee zaum, zoo li thaum taug kev luv luv lossis nce ntaiv, kuv pom tias nws nyuaj rau ua pa, thiab kuv xav tias kuv ua tsis taus pa. |
| Kev ntshaw noj mov | Tshwj xeeb tshaj yog cov menyuam yaus uas tsis tshua xav noj mov. |
| Mob taub hau thiab qaug zog | Ib qho mob uas tshwm sim los ntawm kev tsis txaus oxygen rau lub cev thiab lub hlwb. |
Vim li cas hom kab mob no thiaj tshwm sim? Dab tsi yog qhov ua rau?
Raws li peb tau tham ua ntej lawm, qhov no yog ib yam kab mob uas muaj los ntawm noob caj noob ces. Muaj cov noob caj noob ces tshwj xeeb hauv peb lub cev uas qhia peb kom ua cov qe ntshav liab. Lawv hu ua '(ribosomal protein genes)'. Ib tug neeg uas muaj DBA muaj kev hloov pauv lossis kev hloov pauv hauv cov noob caj noob ces no. Yog li ntawd, cov txheej txheem ntawm kev ua cov qe ntshav liab tsis tshwm sim kom raug.
Qhov tseem ceeb yog tias nws tuaj yeem kis tau los ntawm niam txiv mus rau cov menyuam. Tab sis qhov no tsuas yog tshwm sim hauv feem pua me me xwb, kwv yees li 10% - 25%. Hauv ntau kis, tus menyuam tuaj yeem muaj tus mob txawm tias tsis muaj leej twg hauv tsev neeg muaj tus mob, vim yog kev hloov pauv caj ces.
Muaj lwm yam teeb meem dab tsi tshwm sim vim yog DBA?
DBA tsis yog tsuas yog cuam tshuam rau cov qe ntshav liab xwb. Qee zaum nws kuj tuaj yeem ua rau muaj lwm yam teeb meem kev noj qab haus huv thiab. Tsis tas li ntawd, cov neeg uas muaj DBA muaj feem yuav mob qog noj ntshav ntau dua li cov pej xeem feem ntau.
| Hom teeb meem | Kev piav qhia |
|---|---|
| Cov teeb meem uas tshwm sim ntau zaus | |
| Cov teeb meem yug los | Tej zaum yuav muaj qee qhov teeb meem nrog lub plawv, lub raum, lossis ceg. |
| Kev loj hlob qeeb | Kev loj hlob ntawm lub cev qeeb dua li qhov xav tau rau lub hnub nyoog. |
| Hlau ntau dhau | Kev pub ntshav ntau zaus tuaj yeem ua rau lub cev cov hlau nce siab tsis tsim nyog, ua rau puas tsuaj rau cov kabmob xws li lub plawv thiab lub siab. |
| Txo qis hauv lwm cov qe ntshav | Qee zaum lwm cov qe ntshav, xws li cov qe ntshav dawb (neutropenia) lossis cov platelets (thrombocytopenia), kuj tseem yuav qis. |
| Kev pheej hmoo mob qog noj ntshav (siab me ntsis) | |
| Kab mob ntshav dawb (leukemia) | Tshwj xeeb tshaj yog ib hom mob qog ntshav hu ua "Acute myeloid leukemia - AML" . |
| Myelodysplastic syndrome (MDS) | Lwm yam kab mob ntshav uas ua rau lub cev tsis ua haujlwm zoo. |
| Kab mob Osteosarcoma | Ib yam mob qog noj ntshav uas tshwm sim hauv cov pob txha. |
Cov kws kho mob kuaj mob no li cas thiaj paub tseeb?
Yog koj tus menyuam muaj cov tsos mob no, koj tus kws kho mob yuav xub kuaj koj tus menyuam kom zoo zoo thiab nug koj txog cov ntsiab lus. Tom qab ntawd, lawv yuav ua qee qhov kev kuaj mob kom paub tseeb tias koj tau kuaj mob.
- Kev Ntsuas Tag Nrho Cov Ntshav (CBC): Qhov no ntsuas tus naj npawb ntawm cov qe ntshav liab, cov qe ntshav dawb, thiab cov platelets hauv cov ntshav. Ib tug neeg uas muaj DBA muaj cov qe ntshav liab tsawg heev.
- Tus lej ntawm cov qe ntshav liab (reticulocyte): Cov qe ntshav liab (reticulocytes) yog cov qe ntshav liab tshiab uas tseem tsis tau loj hlob tag. Tus lej tsawg txhais tau tias cov pob txha tsis tsim cov qe ntshav liab tshiab txaus.
- Kev rho cov pob txha thiab kuaj cov nqaij hauv lub cev: Qhov no yog qhov kev kuaj tseem ceeb uas siv los paub meej tias muaj tus kab mob. Hauv qhov no, yuav muab cov pob txha me me coj los kuaj, feem ntau yog los ntawm pob txha ntawm lub duav, thiab muab tshuaj loog tso rau hauv qab lub tshuab kuaj mob me me. Tom qab ntawd yuav kuaj nws hauv qab lub tshuab kuaj mob me me kom paub tseeb tias muaj pes tsawg cov qe ntshav liab tsim tawm.
Cov kev kho mob rau DBA yog dab tsi?
Txawm hais tias DBA tsis tuaj yeem kho tau tag nrho los xij, muaj cov kev kho mob zoo uas tuaj yeem pab tswj cov tsos mob thiab tswj tau lub neej zoo.
1. Corticosteroids: Cov tshuaj no ua rau cov pob txha tsim cov qe ntshav liab ntau dua. Kev kho mob no ua tau zoo rau ntau tus neeg mob.
2. Kev ntxiv ntshav: Cov neeg uas muaj cov ntshav tsawg heev yuav tau txais cov qe ntshav liab los ntawm tus neeg pub dawb uas noj qab nyob zoo. Cov kws kho mob tuaj yeem pib kho qhov no sai li sai tau thaum kuaj pom tias muaj tus kab mob. Qhov no ua rau cov tsos mob ploj mus sai.
3. Kev hloov noob hlwb: Qhov no yog tib txoj kev kho mob uas tuaj yeem kho DBA tau tag nrho . Txawm li cas los xij, qhov no yog kev kho mob nyuaj heev thiab muaj kev pheej hmoo. Hauv qhov no, cov noob hlwb los ntawm cov pob txha ntawm tus neeg noj qab haus huv (feem ntau yog ib tug tswv cuab hauv tsev neeg) raug hloov mus rau hauv tus neeg mob. Qhov no tsis yog ua tau rau txhua tus. Tus kws kho mob kawm tus neeg mob tus mob kom zoo, nrhiav qhov phim zoo tshaj plaws, thiab txiav txim siab qhov no tom qab xav ntau.
Yuav ua li cas thaum muaj xwm txheej ceev?
Yog tias koj lossis koj tus menyuam muaj DBA, nws yog ib qho tseem ceeb heev uas yuav tsum sib txuas lus nrog koj tus kws kho mob. Nws yog ib qho tseem ceeb uas yuav tsum mus ntsib kws kho mob raws sijhawm thiab noj koj cov tshuaj raws li tau sau tseg. Yog tias koj cov tsos mob hnyav zuj zus (piv txwv li, koj nkees ntau dua li niaj zaus, koj kis tau kab mob ntau dua), qhia rau koj tus kws kho mob tam sim ntawd.
Tsis tas li ntawd xwb, yog tias koj muaj ib qho ntawm cov tsos mob ceev hauv qab no, mus rau Chav Kho Mob Ceev (ETU) ze tshaj plaws tam sim ntawd .
- Mob hauv siab hnyav heev
- Mob plab sai sai
- Mob taub hau loj heev, tsis meej pem, lossis hais lus tsis tau (cov no tej zaum yuav yog cov cim qhia tias muaj mob stroke)
- Kev los ntshav uas tsis tuaj yeem tswj tau
Nyob nrog tus mob DBA uas tsis tshua muaj neeg mob, tshwj xeeb yog tias nws yog koj tus menyuam, tuaj yeem nyuaj heev. Nws tuaj yeem ua rau koj kho siab. Tab sis nco ntsoov, koj tsis nyob ib leeg. Koj tus kws kho mob thiab pab pawg kho mob yuav muab kev txhawb nqa thiab kev taw qhia rau koj uas koj xav tau.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Kab mob Diamond-Blackfan anemia (DBA) yog ib yam kab mob tsis tshua muaj uas ua rau cov pob txha tsis tsim cov qe ntshav liab txaus.
- Cov tsos mob tseem ceeb yog qaug zog ntau zaus, ntsej muag dawb paug, thiab ua tsis taus pa.
- Txawm hais tias qhov no yog ib qho mob uas yuav kho tau mus ib txhis, nws tuaj yeem kho tau zoo nrog kev kho mob xws li cov tshuaj steroid thiab kev hloov ntshav.
- Nws yog ib qho tseem ceeb uas yuav tsum tau sib cuag nrog koj tus kws kho mob tsis tu ncua thiab tau txais kev kuaj mob thiab kev kho mob kom raug.
- Yuav tsum paub txog cov cim ceeb toom thaum muaj xwm txheej ceev (xws li mob hauv siab heev, tsis nco qab) thiab mus rau chav kho mob thaum muaj xwm txheej ceev (ETU) hauv tsev kho mob tam sim ntawd.
- Txawm tias koj xav tias koj nyob ib leeg vim qhov no yog ib yam kab mob tsis tshua muaj, nco ntsoov tias muaj cov pab pawg kho mob thiab cov koom haum txhawb nqa los txhawb koj.
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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