Koj puas muaj cov pob me me uas tsim nyob rau hauv qee qhov ntawm koj lub cev? Los yog koj puas hnov lus tsis zoo thiab kiv taub hau? Txawm hais tias peb xav tias cov no yog cov khoom ib txwm muaj, qee zaum tom qab cov no tej zaum yuav muaj cov mob caj ces uas peb tsis tau hnov dua. Hnub no peb yuav tham txog ib qho kab mob zoo li no. Kab mob no yog Neurofibromatosis Type 2, lossis lub npe luv uas peb txhua tus paub yog NF2 . Txawm hais tias qhov no nyuaj me ntsis, cia peb nkag siab nws yooj yim heev.
Hais yooj yim xwb, NF2 yog dab tsi?
NF2 yog ib yam mob caj ces uas cuam tshuam rau peb lub paj hlwb. Kev hloov pauv ntawm ib hom noob caj ces hauv peb lub cev ua rau peb lub cev tsim ntau cov cell. Cov cell ntau dhau no sib sau ua ke thiab tsim cov qog nqaij hlav.
Qhov zoo tshaj plaws yog tias feem ntau ntawm cov qog no yog cov qog tsis muaj mob qog noj ntshav . Qhov no txhais tau tias lawv tsis kis mus rau lwm qhov ntawm lub cev. Txawm li cas los xij, nyob ntawm seb cov qog no tsim nyob qhov twg, peb yuav ntsib ntau yam teeb meem.
Cov chaw feem ntau uas cov pob no tuaj yeem tsim tau yog:
- Cov hlab ntsha thoob plaws peb lub cev (cov hlab ntsha peripheral).
- Lub membrane ntawm lub hlwb thiab lub taub hau (meninges).
- Pob txha nraub qaum.
- Cov hlab ntsha uas txuas lub hlwb thiab pob ntseg sab hauv, pab txhawb kev hnov lus thiab kev sib npaug.
NF2 yog ib yam mob uas koom nrog ib pawg kab mob hu ua 'neurofibromatosis.' Pawg kab mob no feem ntau cuam tshuam rau peb daim tawv nqaij thiab lub paj hlwb.
Kab mob no feem ntau tshwm sim li cas?
Qhov no tsis yog ib yam kab mob uas pom ntau heev. Raws li cov ntaub ntawv txheeb cais, NF2 cuam tshuam rau kwv yees li ib tug ntawm 33,000 tus menyuam yaus uas yug los thoob ntiaj teb. Kwv yees li 3% ntawm tag nrho cov neeg mob neurofibromatosis uas kuaj pom tias muaj tus kab mob yog cov neeg mob NF2.
Cov tsos mob ntawm NF2 yog dab tsi?
Cov tsos mob ntawm NF2 yuav txawv ntawm ib tus neeg mus rau ib tus neeg. Lawv nyob ntawm seb cov qog nyob qhov twg hauv koj lub cev thiab lawv loj npaum li cas. Rau ntau tus neeg, cov tsos mob thawj zaug yog tshwm sim los ntawm cov qog hauv cov hlab ntsha uas tswj kev hnov lus.
Cov tsos mob thawj zaug uas feem ntau tshwm sim yog kev hloov pauv ntawm qhov muag pom lossis hnov lus. Yog tias koj muaj ib yam dab tsi zoo li no, nco ntsoov mus ntsib kws kho mob.
Cov lus hauv qab no tuaj yeem pab koj nkag siab cov tsos mob no kom meej dua.
| Hom tsos mob | Kev piav qhia |
|---|---|
| Cov tsos mob thaum ntxov ntawm cov qog ntawm cov hlab ntsha hnov | |
| Teeb meem sib npaug | Hnov kiv taub hau, tsis tuaj yeem tswj tau qhov sib npaug thaum taug kev. |
| Teeb meem hnov lus | Qhov maj mam poob kev hnov lus hauv ib lossis ob lub pob ntseg. |
| Hnov lub suab nrov hauv pob ntseg (Tinnitus) | Hnov lub suab nrov hauv pob ntseg tas li, txawm tias tsis muaj suab los xij. |
| Cov tsos mob tshwm sim los ntawm cov qog ntawm lwm cov hlab ntsha | |
| Mob taub hau | Mob taub hau ntau zaus uas cov tshuaj tua kab mob ib txwm tsis pab kom zoo. |
| Mob loog lossis cov leeg tsis muaj zog | Tsis muaj zog lossis tsis muaj sia nyob rau thaj chaw xws li tes, taw, lossis lub ntsej muag. |
| Kev tuag tes tuag taw ntawm lub ntsej muag | Tsis muaj peev xwm tswj ib sab ntawm lub ntsej muag kom zoo. |
| Kev hloov pauv ntawm daim tawv nqaij | Qhov tsos ntawm cov nodules lossis plaques ntawm daim tawv nqaij. |
| Teeb meem pom kev | Pom kev tsis meej, cataracts. |
| Mob | Hnov qhov kub hnyiab ntawm tes thiab taw. |
| Qaug dab peg | Kev tshwm sim ntawm cov xwm txheej zoo li haum. |
Cov tsos mob feem ntau pib tshwm sim ntawm thaum yau mus txog rau hnub nyoog 30 xyoo. Txawm li cas los xij, tus kab mob no tuaj yeem cuam tshuam rau cov neeg txhua lub hnub nyoog. Cov neeg laus feem ntau yuav muaj teeb meem hnov lus ua ntej. Txawm li cas los xij, cov menyuam yaus feem ntau yuav muaj qog hauv lub hlwb lossis tus txha caj qaum. Qhov pib ntawm cov tsos mob thaum yau txhais tau tias tus kab mob yuav hnyav dua.
Cov qog twg tshwm sim hauv NF2?
Muaj ntau hom pob qog tseem ceeb uas pom tau hauv NF2. Cia peb saib lawv yooj yim xwb.
| Hom qog | Qhov chaw keeb kwm thiab xwm txheej |
|---|---|
| Schwannomas | Cov no tshwm sim los ntawm cov hlwb hu ua Schwann hlwb. Feem ntau lawv pom muaj nyob rau hauv cov hlab ntsha auditory, uas txuas lub hlwb mus rau pob ntseg (tseem hu ua vestibular schwannomas ). Lawv kuj tuaj yeem tsim nyob rau hauv cov hlab ntsha uas pab nrog tej yam xws li kev txav ntawm lub qhov muag, kev txav ntawm tus nplaig, thiab kev nqos. |
| Meningiomas | Cov no yog ib hom qog uas tsim nyob rau hauv lub hlwb. Tshwj xeeb, lawv tsim nyob rau hauv cov membranes (meninges) ntawm lub hlwb thiab lub taub hau. |
| Gliomas | Qhov no kuj yog ib hom qog uas tsim nyob rau hauv lub hlwb. Cov no yog tsim los ntawm cov hlwb hu ua glial cells. Lawv feem ntau pom nyob ib puag ncig cov hlab ntsha pom. |
| Cov kab mob Ependymomas | Qhov no kuj yog ib hom mob glioma. Nws loj hlob hauv lub hlwb thiab tus txha caj qaum. Nws tshwm sim los ntawm cov hlwb uas tsim cov kua dej hauv lub hlwb (cerebrospinal fluid - CSF). |
Vim li cas NF2 thiaj tshwm sim? Dab tsi yog qhov ua rau?
Qhov laj thawj tseem ceeb rau qhov no yog kev hloov pauv ntawm cov noob caj noob ces 'NF2' hauv peb lub cev. Cov noob caj noob ces no pab tsim cov protein hu ua 'merlin'. Lub luag haujlwm tseem ceeb ntawm cov protein no yog tiv thaiv kev tsim cov qog nqaij hlav (tus neeg tswj cov qog nqaij hlav).
Yog li ntawd, thaum muaj kev hloov pauv hauv cov noob 'NF2', cov protein 'merlin' tsis raug tsim tawm kom zoo. Tom qab ntawd qee cov cell hauv peb lub cev pib faib thiab nthuav dav yam tsis tuaj yeem tswj tau. Qhov no yog li cas cov cell ntau dhau sib sau ua ke thiab tsim cov qog nqaij hlav.
Peb tuaj yeem tau txais qhov kev hloov pauv caj ces no hauv ob txoj kev:
1. Kev xeeb tub los ntawm noob caj noob ces: Yog tias ib tug ntawm cov niam txiv muaj qhov kev hloov pauv ntawm cov noob caj noob ces no, muaj li ntawm 50% txoj hmoo uas tus menyuam yuav tau txais nws (tus qauv 'autosomal dominant').
2. Ua tsis tau raws li lub sijhawm teem tseg: Qee zaum, txawm tias tsis muaj leej twg hauv tsev neeg muaj tus kab mob no los xij, kev hloov pauv caj ces tshiab tuaj yeem tshwm sim tsis raws li lub sijhawm teem tseg thaum cev xeeb tub. Qhov no yog li cas feem ntau cov neeg mob NF2 thiaj li muaj tus kab mob no.
Leej twg muaj feem yuav raug mob? Tej yam teeb meem uas yuav tshwm sim yog dab tsi?
Yog tias ib tug neeg hauv koj tsev neeg, tshwj xeeb tshaj yog koj niam koj txiv, muaj NF2, koj kuj muaj feem yuav muaj tus kab mob no thiab.
Muaj ntau yam teeb meem uas tuaj yeem tshwm sim vim yog NF2.
- Tsis hnov lus kiag li.
- Poob qhov muag tag nrho.
- Kev puas tsuaj rau cov hlab ntsha.
- Cov kua dej hauv lub hlwb.
Tsis tshua muaj qee cov qog NF2 tuaj yeem dhau los ua mob qog noj ntshav, yog li kev kuaj mob tsis tu ncua yog qhov tseem ceeb heev.
Yuav kuaj mob li cas?
Tus kws kho mob yuav kuaj koj thiab ua ntau yam kev kuaj mob kom paub tseeb tias koj puas muaj tus kab mob no lossis tsis muaj. Ua ntej, lawv yuav kuaj lub cev. Lawv yuav saib tej yam xws li kev hloov pauv ntawm koj daim tawv nqaij thiab koj lub cev qhov sib npaug. Tom qab ntawd lawv yuav nug txog koj cov tsos mob thiab keeb kwm kev kho mob hauv tsev neeg.
Tsis tas li ntawd xwb, cov kev ntsuam xyuas hauv qab no kuj tseem tuaj yeem ua tau:
- Kev kuaj MRI: Qhov no tuaj yeem pom tseeb tias puas muaj qog nqaij hlav hauv koj lub paj hlwb thiab daim tawv nqaij.
- Kev ntsuam xyuas kev hnov lus: Xyuas seb koj hnov lus zoo npaum li cas.
- Kuaj qhov muag: Xyuas seb puas muaj cataracts lossis lwm yam teeb meem ntawm qhov muag.
- Kev kuaj noob caj noob ces: Tshawb xyuas seb puas muaj kev hloov pauv hauv cov noob 'NF2'.
Cov kev kho mob rau NF2 yog dab tsi?
Qhov tseeb, tseem tsis tau muaj tshuaj kho tau NF2. Txawm li cas los xij, kev kuaj mob thiab kev kho mob tau zoo dua qub heev. Cov kev kho mob no pab tswj cov tsos mob thiab pab koj ua neej nyob li qub li sai tau. Kev kho mob txawv ntawm ib tus neeg mus rau ib tus neeg. Koj tus kws kho mob yuav txiav txim siab seb kev kho mob twg zoo tshaj plaws rau koj.
| Txoj kev kho mob | Dab tsi tab tom ua |
|---|---|
| Kev phais mob | Yuav phais kom tshem tau cov qog lossis cov kab mob cataracts. |
| Kev kho mob chemotherapy lossis kev kho mob hluav taws xob | Cov kev kho mob no yog siv los txo qhov loj ntawm cov qog nqaij hlav. Piv txwv li, stereotactic radiotherapy yog kev kho mob hluav taws xob. |
| Cov khoom siv pab hnov lus | Cov khoom siv xws li cov khoom pab hnov lus, cochlear implants, thiab auditory brainstem implants yog siv los khaws thiab txhim kho kev hnov lus. |
| Cov khoom siv pab pom kev | Cov khoom siv xws li tsom iav tau muab rau cov neeg uas muaj teeb meem pom kev. |
| Cov khoom siv pab txhawb kev txav mus los | Yog tias muaj teeb meem kev taug kev vim yog cov hlab ntsha raug mob, yuav muab cov khoom siv txav mus los. |
| Cov tshuaj kho mob | Muaj ntau yam tshuaj uas muab los tswj cov tsos mob xws li mob. |
Qee zaum, yog tias koj cov qog tsis ua rau koj tsis xis nyob loj, koj tus kws kho mob yuav txiav txim siab saib xyuas lawv yam tsis kho lawv. Txawm li cas los xij, nws yog ib qho tseem ceeb uas yuav tsum tau kuaj lub cev, luam theej duab, thiab kuaj pob ntseg thiab pom kev tsawg kawg ib xyoos ib zaug los saib xyuas kev nce qib ntawm tus kab mob.
Pab neeg kho mob uas kho qhov no
Vim tias NF2 yog ib yam kab mob uas cuam tshuam rau ntau lub cev, nws raug kho los ntawm ib pab kws kho mob uas muaj ntau yam tshwj xeeb. Pab neeg no feem ntau suav nrog:
- Cov kws kho mob hlwb: Cov kws kho mob uas tshwj xeeb hauv kev mob qog noj ntshav thiab qog nqaij hlav ntawm lub paj hlwb.
- Cov Kws Kho Mob Hlwb: Cov kws phais mob uas tshwj xeeb hauv lub paj hlwb.
- Cov kws phais ENT: Cov kws phais pob ntseg, qhov ntswg, thiab caj pas.
- Cov kws kho mob pob ntseg: Cov kws tshwj xeeb hauv kev hnov lus.
- Cov kws pab tswv yim txog caj ces: Cov kws tshwj xeeb uas qhia txog cov kab mob caj ces.
Puas muaj tej yam tshwm sim ntawm kev kho mob?
Yog, zoo li lwm yam kev kho mob, cov kev kho mob no tuaj yeem muaj cov kev mob tshwm sim. Nws txawv nyob ntawm hom kev kho mob.
Muaj qee qhov kev pheej hmoo hauv kev phais kom tshem tawm cov qog nqaij hlav. Vim tias cov qog nqaij hlav no nyob rau hauv cov cheeb tsam rhiab heev xws li lub hlwb thiab tus txha caj qaum, muaj kev pheej hmoo xws li los ntshav, kev kis kab mob, thiab kev puas tsuaj rau cov hlab ntsha. Tab sis koj pab neeg phais yuav ua qhov zoo tshaj plaws los txo cov kev pheej hmoo no.
Hauv kev kho mob chemotherapy thiab kev kho mob hluav taws xob,
- Kab mob cem quav
- Mob raws plab
- Kev nkees nkees
- Kev poob plaub hau
- Kev ntshaw noj mov
- Xeev siab thiab ntuav
Cov kev mob tshwm sim xws li: Ua ntej pib kho mob, nrog koj tus kws kho mob tham txog cov kev mob tshwm sim uas yuav tshwm sim.
Koj tuaj yeem hais li cas txog lub neej uas muaj tus kab mob no?
NF2 cuam tshuam li cas rau lub neej ntawm ib tus neeg nyob ntawm ntau yam. Qhov loj ntawm cov qhov txhab, lawv qhov chaw nyob, thiab hnub nyoog thaum kuaj pom thawj zaug yog cov tseem ceeb tshaj plaws. Qee zaum cov qhov txhab yuav tsis ua rau muaj tsos mob. Lwm lub sijhawm, cov tsos mob tuaj yeem hnyav heev.
Qhov zoo tshaj plaws yog kuaj mob thaum ntxov thiab pib kho ua ntej muaj teeb meem tshwm sim . Yog li ntawd, qhov kev cia siab yuav zoo dua. Nyob ntawm seb koj cov tsos mob cuam tshuam li cas rau koj, koj tus kws kho mob yuav muab tau qhov kev kwv yees tseeb dua rau koj.
Puas tiv thaiv tau NF2?
Tsis yog. Vim tias NF2 yog ib yam mob uas muaj los ntawm noob caj noob ces, nws tsis tuaj yeem tiv thaiv tau. Txawm li cas los xij, yog tias muaj keeb kwm tsev neeg ntawm tus mob no thiab koj tab tom npaj yuav pib tsev neeg, kev sab laj txog noob caj noob ces raug pom zoo ua ntej muaj menyuam.Nws yog ib qho tseem ceeb heev uas yuav tsum xa mus rau cov hauv qab no: Yog li ntawd koj thiaj li nkag siab zoo dua txog qhov kev pheej hmoo ntawm koj tus menyuam uas yuav muaj tus kab mob no.
Cov Lus Qhia Txog Kev Coj Mus Tsev
- NF2 yog ib yam mob caj ces uas ua rau muaj qog nqaij hlav hauv lub paj hlwb. Feem ntau ntawm cov qog nqaij hlav no tsis yog mob qog noj ntshav.
- Cov tsos mob xws li hnov tsis tau lus, muaj teeb meem sib npaug, pom kev tsis meej, tawv nqaij ua pob, thiab mob taub hau yog ib qho uas pom ntau.
- Txawm hais tias tus kab mob no kho tsis tau tag nrho los xij, muaj ntau yam kev kho mob zoo uas tuaj yeem tswj cov tsos mob thiab txhim kho lub neej zoo.
- Nws yog ib qho tseem ceeb heev uas yuav tsum kuaj mob thaum ntxov thiab mus kuaj mob tsis tu ncua nrog pab pawg kws kho mob tshwj xeeb.
- Yog tias koj tsev neeg muaj keeb kwm muaj cov kab mob no, xav txog kev nrhiav kev pab tswv yim txog caj ces ua ntej muaj menyuam.
💬 Comments (0)
Tsis muaj lus teb tau muab tso tawm. Ntxiv koj cov lus tawm ntawm no thawj zaug.
Ntxiv koj cov lus