Xav txog koj tus menyuam daim tawv nqaij yuav raug mob thiab yooj yim raug mob los ntawm cov khaub ncaws uas lawv hnav, txawm tias lawv raug khawb me ntsis qhov twg los xij. Qhov no yog qhov mob thiab tu siab heev uas hnov, puas yog? Hmoov tsis zoo, qee tus menyuam yaus thiab cov neeg laus ntsib hom xwm txheej no. Hnub no peb yuav tham txog ib qho mob hu ua 'Epidermolysis Bullosa' (EB), uas ua rau daim tawv nqaij zoo li no mos heev thiab rhiab heev. Ib txhia neeg kuj hu cov menyuam no ua "butterfly babies" vim lawv daim tawv nqaij mos heev li tis ntawm npauj npaim.
Yooj yim muab, Epidermolysis Bullosa (EB) yog dab tsi?
Kab mob Epidermolysis Bullosa (EB) tsis yog ib yam kab mob xwb. Nws yog ib yam mob uas muaj los ntawm noob caj noob ces, uas txhais tau tias nws kis tau los ntawm ntau tiam neeg. Daim tawv nqaij ntawm ib tug neeg uas muaj tus kab mob no tsis muaj zog heev. Txawm tias qhov kev nyem me me lossis kev sib txhuam uas yuav tsis ua rau ib tug neeg mob, xws li kev sib txhuam rau ntawm cov khaub ncaws lossis ib tug neeg kov lawv daim tawv nqaij, qee zaum tuaj yeem ua rau muaj cov pob liab thiab cov qhov txhab.
Peb daim tawv nqaij muaj ntau txheej tseem ceeb. Cov txheej no raug cov protein tuav ua ke. Yog xav kom meej, cov protein hu ua collagen tseem ceeb heev rau qhov no. Nws zoo li 'cov pos hniav' uas lo rau cov txheej tawv nqaij. Vim muaj qhov tsis zoo ntawm cov neeg uas muaj tus kab mob EB, cov protein no tsis tau tsim tawm kom zoo. Yog li, vim tias 'cov pos hniav' ntawd tsis muaj zog, cov txheej tawv nqaij yooj yim sib cais, puv nrog cov kua dej thiab tsim cov pob khaus. Cov pob khaus no tsis tuaj yeem tsim tsis yog rau hauv qhov chaw xws li tes, taw, lub luj tshib, thiab lub hauv caug xwb, tab sis kuj nyob hauv qhov ncauj, caj pas, thiab sab hauv lub cev.
Cov kab mob EB feem ntau yog dab tsi?
Kab mob EB muaj plaub hom loj, nyob ntawm seb daim tawv nqaij twg ua rau cov pob khaus loj. Qhov no tseem ceeb heev rau cov kws kho mob txiav txim siab txog kev kho mob.
| Hom EB | Cov tawv nqaij uas raug kev txom nyem | Ib qho lus piav qhia yooj yim |
|---|---|---|
| EB Simplex (EBS) | Sab saud ntawm daim tawv nqaij (epidermis) | Qhov no yog hom mob uas feem ntau tshwm sim. Feem ntau nws tsis hnyav heev. Thaum cov hlwv zoo lawm, ces yuav tsis muaj qhov caws pliav ntau. |
| Kev Sib Txuas EB (JEB) | Qhov twg ob txheej tawv nqaij sib ntsib | Qhov no tsis tshua muaj. Cov pob khaus tuaj yeem tsim sab hauv lub qhov ncauj thiab txoj hlab pa. Nws tuaj yeem sib txawv ntawm nruab nrab mus rau hnyav. |
| Kab mob EB Dystrophic (DEB) | Txheej hauv qab daim tawv nqaij (dermis) | Hauv hom mob no, cov hlwv yuav tawm cov qhov txhab thaum lawv zoo. Kuj tseem yuav muaj tej yam zoo li cov ntiv tes lo ua ke. |
| Kindler Syndrome | Hauv txhua txheej ntawm daim tawv nqaij | Qhov no yog ib hom mob uas tsis tshua muaj. Cov pob khaus tuaj yeem tsim rau ntawm ntau txheej ntawm daim tawv nqaij. |
Cov tsos mob ntawm tus kab mob EB yog dab tsi?
Cov tsos mob yuav txawv nyob ntawm hom kab mob EB. Cov tsos mob feem ntau pib tshwm sim thaum tseem yog menyuam yaus.
- Cov tsos mob tseem ceeb yog kev ua pob khaus ntawm daim tawv nqaij, tshwj xeeb tshaj yog ntawm tes, taw, lub luj tshib, thiab lub hauv caug.
- Daim tawv nqaij ntawm xib teg thiab xib taws tuab zuj zus, zoo li nws raug nias.
- Cov rau tes ua deformed, tuab, lossis tev tawm.
- Muaj cov pob me me dawb zoo li cov hlwv (milia) tshwm sim rau ntawm daim tawv nqaij.
- Nyuaj nqos zaub mov (dysphagia) vim muaj cov hlwv hauv qhov ncauj thiab caj pas.
- Kev raug mob ntau zaus tuaj yeem ua rau lub cev poob ntshav, ua rau muaj ntshav tsis txaus .
- Thaum mob hnyav, cov ntiv tes lo ua ke.
- Kev qaug zog ntawm cov hniav enamel thiab kev loj hlob tsis zoo ntawm cov hniav (hypoplasia).
- Cov menyuam yaus tsis loj hlob zoo.
Qhov tseem ceeb tshaj plaws yog tias tus kab mob no tsis sib kis tau . Nws tsis kis tau ntawm ib tus neeg mus rau lwm tus, tsis yog los ntawm kev kov lossis lwm txoj kev. Qhov no yog ib qho mob caj ces tag nrho.
Yuav kuaj mob thiab kho tus kab mob no li cas?
Yog koj tus menyuam muaj cov tsos mob no, nws yog ib qho tseem ceeb uas yuav tsum mus ntsib kws kho mob. Feem ntau tus kws kho mob yuav ua ntau qhov kev kuaj mob los kuaj mob no.
- Kev kuaj tawv nqaij: Qhov no suav nrog kev rho ib daim tawv nqaij me me thiab kuaj nws hauv qab lub tshuab microscope. Qhov no tuaj yeem pab txiav txim siab seb txheej tawv nqaij twg raug cuam tshuam.
- Kev Kuaj Genetic:Qhov no tuaj yeem pab txiav txim siab meej tias lub noob twg puas thiab nws yog hom EB twg.
Cia peb tham txog kev kho mob.
Thawj qhov uas yuav tsum hais yog tias hmoov tsis zoo, tseem tsis tau muaj tshuaj kho tus kab mob EB no. Txawm li cas los xij, cov tsos mob tuaj yeem tswj tau, cov teeb meem tuaj yeem tiv thaiv tau, thiab tus neeg mob tuaj yeem nyob tau zoo li qub. Lub hom phiaj tseem ceeb ntawm kev kho mob yog:
- Txo qhov ua rau muaj blistering ntau li ntau tau.
- Ua tib zoo saib xyuas kom cov hlwv thiab cov qhov txhab tsis txhob kis kab mob.
- Kev tswj qhov mob.
- Tiv thaiv cov teeb meem kev noj haus.
Nov yog qee cov lus qhia uas cov kws kho mob muab rau qhov no.
- Hnav khaub ncaws mos mos thiab xoob : Koj yuav tsum hnav khaub ncaws ua los ntawm cov xov ntuj xws li paj rwb, uas tsis nruj, thiab tsis txhuam rau koj lub cev.
- Khaws koj daim tawv nqaij kom txias: Kub thiab hws tuaj yeem ua rau cov hlwv ua rau ntau ntxiv, yog li nws tseem ceeb heev kom khaws chav kom sov.
- Siv cov ntaub qhwv tshwj xeeb: Yuav tsum siv cov ntaub qhwv tshwj xeeb thiab daim ntaub qhwv uas tsis lo rau ntawm daim tawv nqaij rau cov qhov txhab.
- Kev saib xyuas qhov txhab txhua hnub: Siv cov tshuaj pleev uas tus kws kho mob tau sau ntawv kom siv thiab ua kom cov qhov txhab huv si.
- Kev Noj Haus: Yog tias koj muaj mob qhov ncauj, koj yuav tsum tsis txhob noj cov khoom noj kub, ntsim, thiab tawv thiab noj cov khoom noj mos xws li kua zaub, cov khoom noj zom, thiab cov khoom qab zib.
- Kev Phais Mob: Hauv qee kis mob hnyav, yuav tsum tau phais mob kom dav lub caj pas yog tias nws nqaim lossis cais cov ntiv tes yog tias lawv lo ua ke.
Cov lus qhia rau cov niam txiv uas saib xyuas tus menyuam uas muaj EB
Kev saib xyuas ib tug me nyuam zoo li no yog ib qho kev cov nyom loj rau cov niam txiv. Nws tuaj yeem ua rau lub cev thiab lub hlwb qaug zog. Tab sis koj txoj kev hlub thiab kev saib xyuas yog lub zog loj rau tus me nyuam.
- Ntxuav koj txhais tes kom huv si ua ntej kov koj tus menyuam daim tawv nqaij.
- Thaum tsa tus me nyuam, tsis txhob tuav nws hauv qab qhov tso quav . Ua li ntawd yuav ua rau daim tawv nqaij puas. Muab koj txhais tes tso rau hauv qab tus me nyuam nraub qaum thiab ob txhais ceg thiab tsa kom zoo.
- Yog koj siv cov ntaub qhwv menyuam yaus, siv cov uas muaj Velcro es tsis txhob siv daim kab xev nplaum. Koj tuaj yeem txo qhov kev sib txhuam los ntawm kev txiav cov hlua roj hmab ncig ob txhais ceg.
- Thaum koj tus menyuam da dej, nws yog qhov zoo tshaj plaws los ntxuav txhua qhov ntawm lub cev maj mam es tsis txhob muab nws tso rau hauv lub tais dej.
- Tsis txhob txwv koj tus menyuam tej kev ua ub ua no. Txawm hais tias kev ua si tsis zoo tsis tsim nyog los xij, kev tawm dag zog me me xws li kev ua luam dej tuaj yeem pab txhawb koj tus menyuam cov leeg nqaij.
- Yog tias koj kuj xav tias koj lub siab qaug zog lawm, tsis txhob yig nrhiav kev pab los ntawm koj tus kws kho mob, tsev neeg, lossis niam txiv uas tau muaj kev paub zoo sib xws.
Thaum twg koj yuav tsum mus ntsib kws kho mob tam sim ntawd?
Thaum tswj hwm EB, qee zaum nws yog qhov tseem ceeb uas yuav tsum nrhiav kev kho mob tam sim ntawd. Saib xyuas cov tsos mob hauv qab no.
- Yog koj ua pa nyuaj. (Hauv cov xwm txheej zoo li no , mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) ntawm lub tsev kho mob ze tshaj plaws tam sim ntawd. )
- Yog tias koj tsis tuaj yeem nqos zaub mov lossis kua dej.
- Yog tias qhov txhab zoo li muaj kab mob (txhais tau tias thaj chaw ib puag ncig qhov txhab liab, o, kub, lossis muaj kua paug tawm los).
- Yog tus me nyuam muaj kub taub hau.
- Yog tias muaj ib qho tsos mob tshiab tshwm sim uas koj tsis nkag siab.
Txawm hais tias kev nyob nrog tus mob no yuav nyuaj heev los xij, nrog kev qhia thiab kev saib xyuas kho mob kom zoo, koj tuaj yeem tswj tau qhov mob thiab ua lub neej zoo. Qhov tseem ceeb tshaj plaws yog ua haujlwm nrog koj tus kws kho mob thiab tsis txhob sim daws cov teeb meem no ib leeg xwb.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Kab mob Epidermolysis Bullosa (EB) yog ib yam mob uas tau los ntawm noob caj noob ces thiab ua rau daim tawv nqaij tsis muaj zog heev. Nws tsis sib kis tau.
- Txawm hais tias tsis muaj kev kho mob tag nrho rau qhov no, koj tuaj yeem nyob nrog nws los ntawm kev tswj cov tsos mob thiab tiv thaiv cov teeb meem.
- Kev saib xyuas tshwj xeeb rau daim tawv nqaij yog qhov tseem ceeb heev kom tiv thaiv tau cov pob khaus thiab cov qhov txhab. Yuav tsum hnav khaub ncaws mos mos, ua kom daim tawv nqaij txias, thiab ua raws li cov txheej txheem saib xyuas daim tawv nqaij uas tsis ua rau daim tawv nqaij puas tsuaj.
- Nws yog ib qho tseem ceeb uas yuav tsum paub txog tej yam xws li nyuaj nqos, kis kab mob, thiab mob thiab nrhiav kev pab kho mob tam sim ntawd yog tias muaj tej yam zoo li no.
- Qhov no yog ib txoj kev taug kev nyuaj rau tus neeg mob thiab tsev neeg. Nws yog ib qho tseem ceeb uas yuav tsum nrhiav kev txhawb nqa los ntawm cov kws kho mob thiab lwm pab pawg txhawb nqa.
💬 Comments (0)
Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus