Koj puas tau xav tias koj tus me nyuam me me qaug zog dua li lwm tus menyuam, lossis lawv muaj teeb meem tuav lawv lub caj dab ncaj? Los yog tej zaum koj tus menyuam hlob dua pheej ntog lossis muaj teeb meem nce ntaiv? Tej zaum koj yuav xav tias cov no yog tej yam ib txwm muaj thiab tsis quav ntsej lawv, tab sis hnub no peb yuav tham txog ib qho laj thawj loj uas qee zaum tuaj yeem ua rau lawv. Ntawd yog Spinal Muscular Atrophy , lossis SMA raws li peb cov kws kho mob hu ua.
Zoo, yog li SMA no yog dab tsi?
Hais yooj yim xwb, qhov no yog ib yam kab mob uas los ntawm noob caj noob ces. Yuav kom cov leeg nqaij hauv peb lub cev txav tau thiab ua haujlwm tau, yuav tsum muaj cov lus los ntawm lub hlwb mus rau cov leeg nqaij ntawd. Cov lus no yog cov hlwb tshwj xeeb (motor neurons) hauv peb lub hlwb qaum uas nqa. Yog hais kom meej, cov hlwb no yog cov uas muab cov lus txib rau cov leeg nqaij kom "qaug zog" thiab "ntev mus."
Hauv SMA, qhov teeb meem caj ces ua rau cov hlwb no maj mam qaug zog thiab tuag. Xav txog nws zoo li ib txoj hlua uas nqa hluav taws xob mus rau lub cuab yeej hluav taws xob maj mam puas tsuaj, txo qhov hluav taws xob uas nws tuaj yeem nqa tau. Ib yam li ntawd, thaum cov hlwb hlwb qaug zog, cov lus uas lawv xa mus rau cov leeg kuj qaug zog. Yog li ntawd, cov leeg maj mam qaug zog thiab poob zog vim tsis siv. Qhov no yog qhov peb hu ua muscular atrophy.
Cov hom SMA tseem ceeb yog dab tsi?
SMA tsis cuam tshuam rau txhua tus tib yam. Nws muab faib ua ntau hom tseem ceeb raws li lub hnub nyoog uas cov tsos mob pib thiab qhov hnyav ntawm tus kab mob. Cov theem tseem ceeb ntawm kev loj hlob uas tus menyuam ncav cuag thaum lawv txoj kev loj hlob - xws li tuav lawv lub caj dab, zaum, thiab taug kev - yog qhov tseem ceeb heev hauv kev faib tawm no.
Yuav kom yooj yim to taub, cia peb saib cov hom no hauv ib lub rooj.
| Hom SMA | Hnub nyoog pib muaj cov tsos mob | Cov yam ntxwv tseem ceeb thiab xwm txheej |
|---|---|---|
| Hom 0 | Ua ntej lossis tom qab yug me nyuam | Ib hom mob hnyav heev thiab tsis tshua muaj. Feem ntau ua rau tuag taus. |
| Hom 1 | Txij thaum yug los txog rau 6 lub hlis | Hom mob uas feem ntau tshwm sim. Tsis tuav tau lub caj dab. Tes thiab taw tsis khov. Zaum tsis tau yam tsis muaj kev txhawb nqa. Ua pa nyuaj thiab nqos nyuaj. |
| Hom 2 | Nruab nrab ntawm 3 thiab 15 lub hlis | Zaum tau yam tsis muaj kev txhawb nqa, tab sis sawv tsis tau lossis taug kev. Qhov tsis muaj zog ntawm caj npab tsawg dua li ntawm ob txhais ceg. Ua pa nyuaj thaum pw tsaug zog yuav tshwm sim. |
| Hom 3 | Tom qab 18 lub hlis mus txog rau cov tub ntxhais hluas | Muaj peev xwm taug kev thiab sawv ntawm nws tus kheej, tab sis nws ntog ntau zaus, nyuaj nce ntaiv, thiab nyuaj tawm ntawm lub rooj zaum. Raws sijhawm mus, tej zaum yuav xav tau kev pab los ntawm lub rooj zaum muaj log. |
| Hom 4 | Thaum laus (20-30 xyoo) | Ib hom tsis tshua muaj. Tej zaum yuav muaj cov leeg nqaij tsis muaj zog me ntsis thiab ua pa nyuaj me ntsis. Cov tsos mob tshwm sim qeeb heev. Lub neej ntev tsis cuam tshuam. |
Tam sim no cia peb tham txog txhua hom no kom meej me ntsis.
SMA hom 1 (kab mob Werdnig-Hoffmann)
Qhov no yog hom mob uas feem ntau thiab hnyav tshaj plaws. Cov menyuam mos no muaj cov tsos mob ua ntej lawv muaj 6 lub hlis. Feem ntau, cov tsos mob pib tshwm sim thaum ntxov li 3 lub hlis. Qhov no yog qhov mob heev rau niam thiab txiv. Tus menyuam mos xav tias tsis muaj sia nyob. Zoo li ib tug menyuam roj hmab. Lub caj dab tsis tuaj yeem tuav ncaj. Cov ceg tawv dai. Vim tias nws nyuaj rau haus mis thiab txawm tias nqos zaub mov, kev tsis txaus zaub mov tuaj yeem tshwm sim. Tsis tas li ntawd, cov leeg nqaij uas pab ua pa tsis muaj zog, yog li qhov kev pheej hmoo ntawm kev kis kab mob ua pa yog siab. Qhov tseeb tu siab yog tias ntau tus menyuam no tsis muaj sia nyob 2 xyoos.
SMA hom 2 (kab mob Dubowitz)
Qhov no yog ib hom mob hnyav nruab nrab. Xav txog seb, koj tus menyuam zaum tau zoo thiab ua si, tab sis tsis sim sawv lossis taug kev thaum muaj hnub nyoog 6-7 lub hlis. Qhov no yog hom mob thib ob. Cov tsos mob feem ntau pib ua ntej tus menyuam sawv tau thiab taug kev ntawm lawv tus kheej. Cov menyuam no yuav muaj zog me ntsis hauv lawv txhais tes dua li hauv lawv ob txhais ceg. Tab sis lawv tsis tuaj yeem sawv thiab taug kev ntawm lawv tus kheej. Thaum lawv loj hlob tuaj, tej zaum hauv lawv cov hluas, lawv yuav xav tau kev txhawb nqa kom zaum tau. Lawv kuj tseem yuav muaj teeb meem ua pa thaum pw tsaug zog, yog li qhov no yuav tsum tau coj mus rau hauv tus account. Nyob ntawm qhov hnyav ntawm cov tsos mob, lub neej ntev yuav luv dua li qub.
SMA hom 3 (Kugelberg-Welander syndrome)
Qhov no yog ib hom mob uas tsis hnyav heev. Cov tsos mob ntawm hom no tshwm sim txij li 1 1/2 xyoos (18 lub hlis) mus txog rau thaum lawv tseem hluas. Cov menyuam no tuaj yeem taug kev thiab sawv ntawm lawv tus kheej. Txawm li cas los xij, qhov teeb meem yog tias lawv ntog ntau zaus, muaj teeb meem khiav thiab dhia, thiab pom tias nws nyuaj heev rau sawv ntawm lub rooj zaum lossis nce ntaiv. Thaum cov leeg nqaij qaug zog dhau sijhawm, lawv yuav xav tau kev pab ntawm lub rooj zaum muaj log tom qab hauv lub neej. Tab sis qhov xov xwm zoo yog tias cov menyuam no tuaj yeem ua neej nyob ib txwm.
SMA hom 4 (SMA laus)
Qhov no yog ib hom mob uas tsis tshua muaj. Cov tsos mob pib thaum lawv laus, feem ntau yog thaum muaj hnub nyoog 20 lossis 30 xyoo. Tej zaum koj yuav muaj qhov tsis muaj zog me ntsis ntawm koj txhais tes thiab ob txhais ceg, thiab qee zaum ua tsis taus pa. Cov tsos mob no tshwm sim qeeb heev uas qee tus neeg tsis paub tias lawv muaj tus kab mob no tau ntau xyoo. Nws tsis cuam tshuam rau lub neej ntev.
Nco ntsoov, thaum muaj cov xwm txheej zoo li no, qhov tseem ceeb tshaj plaws yog kuaj mob sai li sai tau thiab nrhiav kev kho mob kom zoo.
Yog koj pom cov tsos mob zoo li no, koj yuav ua li cas?
Yog tias koj xav tias koj tus menyuam muaj cov tsos mob uas teev nyob rau hauv tsab xov xwm no, thov tsis txhob ntshai thiab tam sim ntawd mus ntsib kws kho mob uas tsim nyog, tshwj xeeb tshaj yog kws kho menyuam yaus. Tsis txhob sim kuaj koj tus kheej raws li hauv internet lossis cov lus xaiv. Qhov no tuaj yeem txaus ntshai. Tus kws kho mob yuav kuaj koj tus menyuam thiab, yog tias tsim nyog, xa koj mus rau kev kuaj noob caj noob ces kom paub meej tias qhov xwm txheej ntawm tus mob. Yog tias tus mob tau lees paub, koj yuav raug qhia txog hom kev tswj hwm tshwj xeeb, kev kho lub cev, thiab kev kho mob tshiab thiab tshiab.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Kab mob Spinal Muscular Atrophy (SMA) yog ib qho mob uas tshwm sim los ntawm kev qaug zog ntawm cov hlab ntsha hauv cov hlab ntsha qaum.Nws yog ib yam kab mob caj ces uas ua rau cov leeg nqaij qaug zog.
- Muaj ntau hom mob tseem ceeb, nyob ntawm seb muaj hnub nyoog li cas thiab qhov hnyav npaum li cas.
- Yog koj pom cov cim qhia tias koj tus menyuam mos tsis muaj zog, muaj kev loj hlob qeeb, lossis poob ntau zaus, tsis txhob tsis quav ntsej nws.
- Nws yog ib qho tseem ceeb heev uas yuav tsum tsis txhob kuaj mob tus kheej thiab mus ntsib kws kho mob tam sim ntawd kom tau txais cov lus qhia zoo.
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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