Koj puas tau pom cov pob liab, pob me me, lossis cov xim txawv txawv ntawm koj tus menyuam daim tawv nqaij tom qab yug los, lossis ob peb lub lis piam tom qab? Qee zaum, ua ib leej niam, pom cov no tuaj yeem ua rau ntshai. Hnub no, peb yuav tham txog ib qho mob uas ua rau muaj cov tsos mob zoo sib xws, uas yog qhov tsis tshua muaj, tab sis tseem ceeb kom paub txog. Qhov no hu ua Incontinentia Pigmenti, lossis luv luv IP.
Dab tsi yog Incontinentia Pigmenti (IP)?
Hais yooj yim xwb, qhov no yog ib qho mob caj ces. Vim tias nws yog X-linked dominant, nws cuam tshuam rau cov ntxhais ntau dua li cov tub hluas.
IP yog ib pawg kab mob hu ua "neurocutaneous disorders". Xav txog seb, qhov no txhais tau tias kab mob no tuaj yeem cuam tshuam rau peb lub paj hlwb (uas yog, lub hlwb thiab cov hlab ntsha) thiab daim tawv nqaij tib lub sijhawm. Tsis yog li ntawd xwb, tab sis qee zaum nws kuj tuaj yeem cuam tshuam rau lub qhov muag, cov hniav, thiab cov pob txha.
Kab mob no feem ntau pom thaum yug los lossis ob peb lub lis piam tom qab yug los, nrog ntau yam pob thiab cov pob liab tshwm sim ntawm daim tawv nqaij. Qhov no yog tshwm sim los ntawm kev hloov pauv hauv cov noob hu ua NEMO (NF-kappaB essential modulator), uas tswj kev ua haujlwm thiab kev loj hlob ntawm peb cov hlwb. Txog tam sim no, tsis muaj kev kho kom tiav rau qhov no, tab sis muaj kev kho mob zoo los tswj cov tsos mob.
Cov kev hloov pauv ntawm daim tawv nqaij yog dab tsi? Muaj 4 theem!
Kev hloov pauv ntawm daim tawv nqaij hauv IP tuaj yeem txheeb xyuas tau hauv plaub theem tseem ceeb. Tab sis nco ntsoov, cov theem no tsis tas yuav tshwm sim raws li kev txiav txim. Qee zaum lawv tuaj yeem hloov pauv, thiab ob lossis peb theem tuaj yeem pom tib lub sijhawm.
| Theem | Qhov tsos & Kev piav qhia |
|---|---|
| Theem 1: Cov pob khaus | Qhov no yog tus yam ntxwv los ntawm cov tsos ntawm cov pob liab, dej puv nkaus ntawm lub cev. Cov no feem ntau pom ntawm tes thiab taw. |
| Theem 2: Verrucal | Muaj cov qhov txhab tshiab zoo li pob khaus tshwm sim qhov twg cov hlwv nyob. |
| Theem 3: Kev ua kom cov xim ntau dhau | Qhov no yog qhov tshwj xeeb tshaj plaws ntawm tus kab mob no. Daim tawv nqaij zoo li cov kab grey, xiav, lossis xim av, marbled lossis wavy. Cov no feem ntau tshwm sim rau ntawm lub cev thiab ceg. |
| Theem 4: Kev txo cov xim tawv nqaij | Nyob rau lub sijhawm dhau mus, cov xim dub ntawd ploj mus, tawm hauv cov qhov txhab daj ntseg, zoo li cov caws pliav uas daj dua li xim tawv nqaij. |
Puas yog tsuas yog cov pob ntawm daim tawv nqaij xwb? Tsis yog, tej zaum yuav muaj lwm yam teebmeem thiab
Tus mob no tsis yog tsuas yog rau ntawm daim tawv nqaij xwb. Tej zaum ib txhia menyuam kuj yuav muaj lwm yam teeb meem. Txawm li cas los xij, koj yuav tsum nkag siab tias tsis yog txhua tus menyuam yuav muaj cov tsos mob no.
Teeb Meem Txog Lub Hlwb
Kwv yees li ntawm 20% ntawm cov menyuam yaus uas muaj IP yuav muaj teeb meem ntawm lub paj hlwb.
- Kev loj hlob qeeb ntawm lub cev: Piv txwv li, lawv yuav tsis muaj peev xwm tig lawv lub caj dab, dov, lossis taug kev tib lub sijhawm li lwm tus menyuam mos.
- Kev tsis taus ntawm lub hlwb: Tej yam zoo li kev tsis taus ntawm kev kawm.
- Cov leeg tsis muaj zog: Kev xav tias tsis muaj zog.
- Kev qaug dab peg: Kev tshwm sim ntawm cov xwm txheej zoo li haum.
Qhov no tuaj yeem tshwm sim los ntawm tej yam xws li kev ntsws ntawm cov ntaub so ntswg hauv lub hlwb (cerebral atrophy) thiab kev tsim cov qhov me me hauv cov khoom dawb ntawm lub hlwb.
Cov teebmeem rau qhov muag thiab cov hniav
- Teeb meem qhov muag: Qee tus menyuam yaus yuav muaj mob xws li strabismus, cataracts, lossis poob qhov muag loj heev.
- Teeb Meem Hniav: Cov hniav ploj thiab cov hniav zoo li tus pas yuav pom tau.
Qhov tseem ceeb tshaj plaws yog tsis txhob ntshai sai li sai tau thaum koj pom cov tsos mob zoo li no, tab sis mus ntsib kws kho mob menyuam yaus kom tau lus qhia.
Qhov no kho li cas?
Kev kho mob IP yog raws li tus menyuam cov tsos mob. Cov kev xaiv kho mob uas haum rau txhua tus menyuam yuav txawv.
| Teeb Meem (Cov tsos mob) | Kev Kho Mob |
|---|---|
| Cov pob tawv nqaij thiab cov hlwv | Qhov xov xwm zoo yog tias cov pob ntawm daim tawv nqaij no feem ntau tsis tas yuav kho tshwj xeeb. Feem ntau lawv yuav ploj mus thaum tus menyuam loj hlob lossis laus zuj zus. |
| Teeb meem ntawm lub paj hlwb (qaug dab peg, cov leeg tsis muaj zog) | Rau tej yam zoo li no, koj yuav tsum mus ntsib kws kho mob hlwb . Tom qab ntawd, cov mob no tuaj yeem tswj tau nrog tshuaj lossis, yog tias tsim nyog, lwm yam khoom siv kho mob. |
| Kev tsis pom kev zoo | Yog tias muaj teeb meem pom kev tsis meej, koj tuaj yeem mus ntsib kws kho qhov muag thiab tau txais tsom iav, tshuaj, lossis, yog tias muaj teeb meem loj, phais. |
| Teeb meem hniav | Yog tias muaj teeb meem nrog cov duab lossis tus naj npawb ntawm cov hniav, koj tuaj yeem nrhiav kev kho mob tsim nyog los ntawm kws kho hniav. |
Yog li ntawd, peb puas yuav tsum ntshai txog yav tom ntej?
Qhov no yog ib lo lus nug uas ntau tus niam txiv muaj. Qhov tseeb, feem ntau, yog tias tsis muaj teeb meem loj thaum yau, cov menyuam yaus uas muaj tus kab mob IP tuaj yeem ua neej nyob li qub thiab ua neej noj qab nyob zoo li qub . Raws li lub sijhawm dhau mus, cov xim dub ntawm daim tawv nqaij yuav ploj mus, thiab tej zaum yuav ploj mus tag.
Txawm li cas los xij, raws li tau hais ua ntej lawm, muaj cov menyuam yaus uas muaj teeb meem ntawm lub paj hlwb lossis lwm yam teeb meem ntawm lub cev. Yog li ntawd, qhov zoo tshaj plaws uas yuav tsum ua yog tham nrog koj tus kws kho mob txog koj tus menyuam tus mob. Tom qab ntawd koj tuaj yeem nkag siab meej txog qhov kev npaj kho mob zoo tshaj plaws rau koj tus menyuam yog dab tsi thiab yuav ua li cas tom ntej.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- Incontinentia Pigmenti (IP) yog ib qho mob caj ces tsis tshua muaj uas feem ntau cuam tshuam rau cov ntxhais.
- Cov tsos mob tseem ceeb yog cov kev hloov pauv ntawm daim tawv nqaij (cov pob khaus, cov tawv nqaij ntxhib, cov tawv nqaij tsaus nti, thiab cov tawv nqaij dawb).
- Ntxiv rau qhov teeb meem ntawm daim tawv nqaij, qee tus menyuam yaus kuj yuav muaj teeb meem ntsig txog lub paj hlwb, qhov muag, thiab cov hniav.
- Cov pob ntawm daim tawv nqaij feem ntau ploj mus raws sijhawm yam tsis tau kho.
- Feem ntau cov menyuam yaus tuaj yeem ua neej nyob zoo li qub thiab noj qab nyob zoo yam tsis muaj teeb meem loj.
- Yog tias koj tus menyuam muaj cov tsos mob no, nws yog ib qho tseem ceeb heev uas yuav tsum tsis txhob ntshai thiab mus ntsib kws kho mob menyuam yaus 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