Cia peb kawm ntxiv txog Kab Mob Ntshav Qab Zib (Tuberous Sclerosis). Tsis txhob ntshai, cia peb tham!

Qee zaum hauv peb lub neej, peb hnov ​​​​txog cov kab mob uas tsis tuaj yeem xav txog thiab txawv me ntsis, puas yog? Zoo, ib qho kab mob uas ntau tus neeg tsis tau hnov ​​​​​​txog, tab sis nws tseem ceeb heev kom paub txog, yog Tuberous Sclerosis Complex (TSC) , lossis yooj yim Tuberous Sclerosis . Qhov tshwm sim hauv qhov no yog tias cov qog nqaij hlav tsis yog mob qog noj ntshav, lossis cov qog nqaij hlav, tsim nyob rau hauv ntau qhov ntawm koj lub cev, tshwj xeeb tshaj yog nyob rau hauv qhov chaw xws li lub hlwb, daim tawv nqaij, raum, lub plawv, thiab lub ntsws. Qhov no yog ib qho kab mob caj ces. Tab sis tsis txhob txhawj, peb yuav tham txog txhua yam kom meej thiab yooj yim.

Tuberous Sclerosis yog dab tsi tiag?

Hais yooj yim xwb, tuberous sclerosis (TSC) yog ib yam kab mob uas tsis tshua muaj los ntawm noob caj noob ces. Nws tuaj yeem ua rau cov qog nqaij hlav uas tsis yog mob qog noj ntshav tsim nyob rau ntau qhov chaw ntawm koj lub cev, xws li koj lub hlwb, daim tawv nqaij, raum, lub plawv, qhov muag, thiab lub ntsws. Nws yog ib qho tseem ceeb uas yuav tsum nco ntsoov tias cov qog nqaij hlav no tsis yog mob qog noj ntshav . Qhov no txhais tau tias lawv tsis yog cov qog nqaij hlav txaus ntshai uas kis los ntawm ib feem ntawm lub cev mus rau lwm qhov. Txawm li cas los xij, cov qog nqaij hlav no tuaj yeem ua rau muaj ntau yam teeb meem kev noj qab haus huv, nyob ntawm qhov chaw uas lawv tshwm sim thiab lawv qhov loj me.

Muaj ib txhia neeg tsis raug tus mob no hnyav heev. Lawv ua tau lub neej zoo li qub. Tab sis rau ib txhia neeg, nws yuav hnyav dua thiab ua rau muaj ntau yam teeb meem. Tus kab mob no maj mam tshwm sim. Qee cov tsos mob yuav pib thaum tseem hluas, tab sis lwm tus yuav siv sijhawm ntau xyoo los tshwm sim. Yog li ntawd, ib tus neeg uas muaj tus mob no xav tau kev qhia thiab kev saib xyuas tas mus li.

Leej twg raug tus mob no ntau tshaj? Nws tshwm sim ntau npaum li cas?

Kab mob tuberous sclerosis (TSC) yog ib yam mob uas muaj thaum yug los . Kwv yees li ib nrab ntawm cov menyuam yaus raug kuaj pom tias muaj tus mob thaum lawv muaj li ntawm 7 lub hlis. Txawm li cas los xij, qee zaum cov tsos mob tsis pom tseeb, thiab nws yuav tsis raug kuaj pom tau ntau xyoo. Txawm tias yog tus mob raug kuaj pom thaum yau, cov tsos mob tshiab yuav tshwm sim thaum lawv loj hlob tuaj.

Tus mob no tuaj yeem cuam tshuam rau txhua tus neeg, tsis hais poj niam txiv neej, haiv neeg, lossis pawg neeg twg los xij. Qhov ntawd txhais tau tias tsis muaj ib pawg neeg tshwj xeeb uas raug tus mob no.

Xav txog seb qhov no tsis tshua muaj li cas. Tuberous sclerosis (TSC) yog ib yam kab mob tsis tshua muaj . Tsuas muaj li ntawm 50,000 tus neeg hauv Tebchaws Meskas uas muaj tus kab mob no. Thoob ntiaj teb, muaj li ntawm ib lab tus neeg. Yog li koj tuaj yeem xav txog seb tus mob no tsis tshua muaj li cas.

Kab mob tuberous sclerosis (TSC) cuam tshuam li cas rau lub cev?

Qhov cuam tshuam tseem ceeb ntawm tuberous sclerosis (TSC) yog tias cov hlwb hauv lub cev loj hlob ua ke ua cov pob me me (qog). Qhov no feem ntau tshwm sim hauv lub hlwb . Tsis tas li ntawd, koj kuj tseem yuav muaj kev hloov pauv hauv koj daim tawv nqaij, tshwj xeeb tshaj yog thaum koj tseem hluas heev. Qhov tseeb, cov kev hloov pauv ntawm daim tawv nqaij no feem ntau yog thawj qhov cim qhia tias ib tus neeg muaj tus kab mob.

Tsis yog li ntawd xwb, tab sis tuberous sclerosis (TSC) kuj tseem tuaj yeem cuam tshuam rau koj lub plawv thiab raum. Nws yog ib qho uas muaj ntau hom qog tsim nyob rau hauv cov kabmob no. Nws tsis tshua muaj qog tsim nyob rau lwm qhov chaw.

Cov tsos mob yog dab tsi? Lawv tshwm sim li cas?

Cov tsos mob ntawm tuberous sclerosis (TSC) tuaj yeem sib txawv heev nyob ntawm seb lub cev lossis qhov chaw ntawm lub cev raug cuam tshuam. Cov tsos mob tuaj yeem muab faib ua peb pawg tseem ceeb:

• Cov tsos mob ntsig txog lub hlwb
• Cov tsos mob ntawm daim tawv nqaij
• Lwm yam kev hloov pauv sab hauv lub cev

Tam sim no cia peb saib txhua yam no sib cais.

Cov tsos mob ntsig txog lub hlwb

Cov tsos mob ntsig txog lub hlwb tshwm sim thaum cov qog lossis cov hlab ntsha hauv lub hlwb (hamartomas) tsim nyob rau hauv lub hlwb vim yog tuberous sclerosis (TSC). Txawm hais tias cov qog no tsis yog mob qog noj ntshav, lawv tuaj yeem ua rau lub hlwb puas tsuaj thiab cuam tshuam rau kev ua haujlwm ntawm lub hlwb. Qee qhov piv txwv yog:

• Subependymal giant cell astrocytoma (SEGA) : Cov no yog cov qog nqaij hlav uas tsim rau ntawm qhov chaw ntawm lub hlwb, tshwj xeeb tshaj yog rau ntawm qhov chaw me me uas muaj kua dej (ventricles) hauv lub hlwb. Cov no qee zaum tuaj yeem thaiv cov dej ntws ntawm cov kua hauv lub hlwb, ua rau cov kua dej sib sau ua ke hauv thiab ib puag ncig lub hlwb. Qhov mob no hu ua hydrocephalus .
• Cov hlab ntsha hauv lub hlwb (hamartomas) : Cov no yog cov pawg hlwb uas tsis yog mob qog noj ntshav. Cov pawg hlwb no tsim nyob rau hauv lub hlwb, ze rau qhov chaw uas lawv yuav tsum nyob, tab sis ua rau muaj kev tsis sib haum xeeb me ntsis. Qhov no yog vim muaj ntau lub hlwb tau tsim thiab tsis muaj chaw txaus rau lawv loj hlob.

Feem ntau, tuberous sclerosis (TSC) tuaj yeem ua rau muaj lwm yam mob, uas kuj muaj cov tsos mob zoo sib xws:

• Kev qaug dab peg : Qhov no yog ib qho tshwm sim ntau heev.
• Kev loj hlob qeeb thiab kev puas siab puas ntsws : Piv txwv li, ib tug me nyuam yuav muaj kev qeeb hauv kev hais lus, kev taug kev, thiab lwm yam. Kev tsis taus ntawm kev kawm kuj tseem yuav tshwm sim.
• Cov mob uas cuam tshuam nrog kev loj hlob ntawm lub hlwb: Cov mob xws li autism spectrum disorder lossis attention-deficit/hyperactivity disorder (ADHD) .

Txawm hais tias qaug dab peg thiab muaj teeb meem kev puas siab puas ntsws feem ntau tshwm sim nrog tuberous sclerosis (TSC), tsis yog txhua tus neeg uas muaj tus kab mob no yuav muaj lawv. Nws kuj tseem ua tau kom muaj qaug dab peg ib leeg yam tsis muaj teeb meem kev puas siab puas ntsws.

Cov tsos mob ntawm daim tawv nqaij

Cov tsos mob ntawm daim tawv nqaij feem ntau yog thawj qhov cim qhia ntawm tuberous sclerosis (TSC). Cov kws tshaj lij hais tias 90% ntawm cov neeg uas muaj tus kab mob no muaj ib lossis ntau yam ntawm cov hauv qab no:

• Cov xim av ntawm nplooj ntoo tshauv : Cov no yog melanin hauv daim tawv nqaij.Cov cheeb tsam uas muaj cov xim tsis tshua muaj (cov xim uas ua rau daim tawv nqaij muaj xim). Cov pob no zoo li nplooj xim grey. Qee zaum, lawv nyuaj rau pom rau cov neeg uas muaj daim tawv nqaij dawb. Cov pob no ci ntsa iab nyob rau hauv ib hom teeb ultraviolet (UV) tshwj xeeb.
• Cov cim confetti : Cov no zoo li cov quav hnav. Txawm li cas los xij, thaum cov quav hnav ib txwm tsaus dua li daim tawv nqaij ib puag ncig, cov cim confetti no muaj xim sib dua li daim tawv nqaij ib puag ncig. Cov no kuj tuaj yeem tshwm sim thaum tseem hluas.
• Cov fibromas ntawm lub ntsej muag : Cov no yog cov qog nqaij hlav uas tsis yog mob qog noj ntshav uas tsim rau ntawm daim tawv nqaij ntawm lub ntsej muag. Thaum lawv loj hlob tuaj, lossis thaum ntau qhov nyob ze ua ke, lawv tuaj yeem tshwm sim ua cov qauv loj hu ua "plaques." Lawv yuav muaj xim tsaus dua li daim tawv nqaij ib puag ncig.
• Cov fibromas rau tes thiab rau taw : Cov no zoo ib yam li cov fibromas ntawm lub ntsej muag, tab sis lawv tsim nyob ib puag ncig lossis hauv qab cov rau tes ntawm cov ntiv tes thiab cov ntiv taw. Lawv feem ntau tshwm sim thaum lub sijhawm laus thiab tuaj yeem loj hlob thoob plaws lub neej.
• Cov pob khaus ntsuab : Cov no yog cov nqaij mos uas tsim nyob rau hauv qab txheej tawv nqaij sab nraud (epidermis). Feem ntau lawv tshwm sim rau ntawm nraub qaum qis. Lawv zoo li daim tawv nqaij ntawm txiv kab ntxwv lossis txiv qaub ntsuab.

Nco ntsoov, tsuas yog pom cov pob lossis cov pob no ntawm koj daim tawv nqaij tsis tau txhais hais tias koj muaj mob tuberous sclerosis. Nws yog ib qho tseem ceeb uas yuav tsum tau mus ntsib kws kho mob.

Lwm yam kev hloov pauv sab hauv lub cev

Cov qog nqaij hlav lossis cov cysts uas tshwm sim nrog tuberous sclerosis (TSC) tuaj yeem tshwm sim rau ntau qhov ntawm lub cev. Lwm yam kev hloov pauv kuj tseem yuav tshwm sim. Ib txhia ntawm lawv yog:

• Kev Hloov Pauv Hauv Qhov Ncauj : Cov Fibromas (qog) tshwm sim hauv qhov ncauj, thiab cov hniav tawg vim yog poob cov hniav enamel. Cov kev hloov pauv no hauv cov hniav enamel pom muaj nyob rau hauv yuav luag txhua tus neeg uas muaj TSC. Cov pos hniav tuaj yeem mob thiab los ntshav vim yog cov pob. Cov hniav enamel tawg kuj tuaj yeem ua rau muaj qhov.
• Cov qog raum : Thaum cov no tshwm sim hauv cov raum, lawv tuaj yeem cuam tshuam rau kev ua haujlwm ntawm lub raum. Cov tsos mob tuaj yeem suav nrog mob nraub qaum lossis sab nraub qaum, ntshav hauv cov zis, thiab pob zeb raum. Qee zaum, kev ua haujlwm ntawm lub raum tsis ua haujlwm thiab ib hom mob qog raum hu ua renal cell carcinoma kuj tuaj yeem tshwm sim.
• Cov qog ntawm lub retina lossis cov hlab ntsha optic : Cov qog no tuaj yeem ua rau muaj teeb meem pom kev, tab sis qhov no tsis tshua muaj.
• Cov qog nqaij hlav hauv lub plawv (cardiac rhabdomyomas) : Cov no yog cov mob hnyav tshaj plaws rau cov menyuam mos. Qhov kev pheej hmoo yuav txo qis thaum lawv laus zuj zus. Cov qog nqaij hlav loj dua tuaj yeem thaiv cov ntshav ntws hauv lub plawv, tab sis qhov no kuj tsis tshua muaj.
• Cov qog ntsws : Yog tias cov no hnyav zuj zus, lawv tuaj yeem ua rau ua pa nyuaj.

Dab tsi ua rau muaj tus kab mob tuberous sclerosis (TSC)?

Kab mob tuberous sclerosis (TSC) yog ib yam kab mob uas muaj noob caj noob ces . Qhov no txhais tau tias nws yog los ntawm kev hloov pauv (kev hloov pauv) hauv peb cov DNA . Ntau lub cell hauv peb lub cev faib thiab hloov los ntawm cov cell tshiab. Cov txheej txheem no yog tswj los ntawm cov protein uas tiv thaiv qog noj ntshav.

Cov protein no tswj qhov ceev uas cov cell faib thiab qhov loj ntawm cov cell. Xav txog seb yuav muaj dab tsi tshwm sim yog tias cov protein no tsis sib npaug? Tom qab ntawd, cov cell uas loj dhau, ntau dhau, pib loj hlob. Thaum lawv tsis muaj qhov chaw mus, lawv loj hlob tawm ntawm kev tswj hwm thiab tsim cov qog. Qhov ntawd yog qhov tshwm sim hauv tuberous sclerosis.

Qhov no puas yog ib yam dab tsi uas los ntawm ntau tiam neeg los?

Cov kev hloov pauv caj ces uas ua rau muaj tuberous sclerosis (TSC) tuaj yeem tshwm sim ua ob hom:

• Tej zaum yuav muaj tej yam tsis zoo tshwm sim : Cov no yog tej yam yuam kev uas tshwm sim tom qab cev xeeb tub (uas yog, tom qab cov phev thiab qe sib koom ua ib lub qe menyuam). Zoo li muaj ib qho yuam kev sau ntawv yuam kev hauv ib phau ntawv uas tab tom luam tawm. Cov no feem ntau tshwm sim ntau dua li cov teeb meem uas tau txais los ntawm noob caj noob ces.
• Tau txais los ntawm niam txiv : Kwv yees li ib feem peb ntawm cov neeg mob tuberous sclerosis (TSC) tau txais nws los ntawm niam txiv.

Yuav kuaj mob tuberous sclerosis (TSC) li cas?

Cov kws tshaj lij faib cov cim thiab cov tsos mob ntawm tus kab mob ua ob pawg tseem ceeb: cov yam ntxwv tseem ceeb thiab cov yam ntxwv me . Yuav kom paub tseeb tias koj muaj tuberous sclerosis (TSC), koj yuav tsum muaj ob lossis ntau yam ntxwv tseem ceeb. Vim tias cov tsos mob tuaj yeem tshwm sim raws sijhawm, tus kws kho mob yuav faib koj tus mob ua "TSC uas ua tau" yog tias koj tsuas muaj ib qho yam ntxwv tseem ceeb lossis ob qho ntxwv me.

Cov yam ntxwv tseem ceeb

• Yam tsawg kawg yog peb daim nplooj ntoo tshauv (txhua daim yuav tsum dav tsawg kawg yog 5 hli).
• Muaj tsawg kawg yog ob lub fibromas ntawm lub ntsej muag lossis ib lub fibroma plaque ntawm lub ntsej muag/lub taub hau.
• Muaj tsawg kawg yog ib qho fibroma rau tes lossis rau taw.
• Muaj tsawg kawg ib daim shagreen.
• Muaj ntau tshaj ib qho mob ntawm lub retina.
• Muaj cov nqaij tshwj xeeb loj hlob hauv lossis ntawm qhov chaw ntawm lub hlwb.
• Ib hom kev loj hlob tshwj xeeb hauv lub plawv.
• Muaj ib hom qog nqaij hlav tshwj xeeb uas tsis yog mob qog noj ntshav (qog nqaij hlav benign) uas cuam tshuam rau lub ntsws, lub raum, lossis cov qog ntshav hauv lub cev.

Cov yam ntxwv me me

• Qhov txhab ntawm daim tawv nqaij uas muaj daim ntawv nplaum.
• Muaj plaub lossis ntau qhov hauv cov enamel ntawm cov hniav.
• Muaj ob lossis ntau lub qog hauv qhov ncauj.
• Cov qog ntawm lub qhov muag.
• Muaj ntau tshaj ib lub cyst hauv lub raum.
• Cov qog uas tsis yog mob qog noj ntshav (cov qog zoo) hauv lwm cov kabmob lossis thaj chaw.

Kev kuaj mob

Vim tias tus kab mob tuberous sclerosis (TSC) muaj peev xwm ua rau muaj ntau yam tsos mob thiab cov teebmeem, muaj ntau yam kev kuaj mob uas ua tau. Cov kev kuaj mob no yuav txawv nyob ntawm koj cov tsos mob. Koj tus kws kho mob tuaj yeem piav qhia tau zoo tshaj plaws txog yam kev kuaj mob uas koj xav tau thiab vim li cas lawv thiaj raug ua. Hauv qab no yog qee qhov kev kuaj mob feem ntau rau tus kab mob tuberous sclerosis (TSC). Kev kuaj noob caj noob ces yog kauj ruam kawg hauv kev lees paub qhov kev kuaj mob TSC thiab txheeb xyuas qhov kev hloov pauv tshwj xeeb hauv TSC gene.

Kev kuaj mob rau cov tsos mob ntsig txog lub hlwb

Yog tias koj muaj cov tsos mob ntsig txog lub hlwb, tshwj xeeb tshaj yog tias koj muaj qaug dab peg (lossis yog tias muaj pov thawj tias koj yuav muaj qaug dab peg), tej zaum koj yuav muaj feem ntau dua los kuaj mob los ntawm kev siv duab thiab lwm yam kev kuaj mob. Cov kev ntsuas thiab kev kuaj mob no suav nrog:

• Kev thaij duab CT (Computed tomography - CT scan)
• Kev thaij duab MRI (Magnetic resonance imaging - MRI scan)
• EEG (Electroencephalogram - EEG) (Qhov no sim cov haujlwm hluav taws xob ntawm lub hlwb)

Yog tias tus kws kho mob xav tias koj muaj kev tsis taus ntawm kev txawj ntse, lawv yuav pom zoo kom kuaj xyuas kev paub tshwj xeeb. Cov kev kuaj no pab txheeb xyuas cov teeb meem nrog koj lub hlwb thiab kev xav ua haujlwm li cas . Cov no feem ntau suav nrog cov teeb meem lossis cov haujlwm ntsig txog tej yam xws li kev nco, kev txiav txim siab, thiab kev txiav txim siab.

Kev kuaj mob rau cov tsos mob ntawm daim tawv nqaij

Kev kuaj lub cev yog ib qho tseem ceeb heev rau kev kuaj mob tuberous sclerosis (TSC). Ntau yam cim thiab tsos mob ntawm tus mob no tuaj yeem pom thaum yau. Muaj qee qhov kev kuaj uas tuaj yeem pab tus kws kho mob paub tseeb tias koj puas muaj TSC. Cov kev kuaj feem ntau yog:

• Kev kuaj lub teeb ntoo : Qhov no yog kev kuaj uas tsis yog kev phais uas siv lub teeb ultraviolet los saib seb cov nplooj ntoo tshauv puas ci.
• Kev kuaj daim tawv nqaij : Yuav muab ib daim tawv nqaij me me coj mus kuaj.

Kev ntsuam xyuas rau kev hloov pauv sab hauv lub cev

Kev kuaj noob caj noob ces yog ib qho cuab yeej tseem ceeb hauv kev kuaj mob TSC. Nruab nrab ntawm 75% thiab 95% ntawm cov neeg mob muaj kev hloov pauv hauv cov noob caj noob ces TSC1 lossis TSC2. Nws muaj peev xwm muaj tus kab mob yam tsis muaj kev hloov pauv uas pom tau, tab sis qhov no tsis tshua muaj.

Ntau yam kev hloov pauv uas cuam tshuam nrog TSC pib thaum ib tug neeg tab tom loj hlob ua ib tug menyuam hauv plab. Cov kws kho mob qee zaum tuaj yeem pom cov kev hloov pauv no thaum lub sijhawm saib xyuas menyuam yaus, tshwj xeeb tshaj yog thaum lub sijhawm kuaj ultrasound , lossis nrog CT lossis MRI scans ua sai sai tom qab yug los.

Cov kev kho mob rau tuberous sclerosis (TSC) yog dab tsi?

Kab mob tuberous sclerosis (TSC) tsis tuaj yeem kho tau tag nrho . Txawm li cas los xij,Feem ntau cov mob no kho tau. Cov kev xaiv kho mob feem ntau nyob ntawm seb koj muaj cov tsos mob li cas. Cov kev kho mob uas siv ntau tshaj plaws yog:

• Cov Tshuaj : Cov tshuaj tuaj yeem pab tau ntau yam tsos mob ntawm TSC. Qee cov tshuaj tuaj yeem tswj cov tsos mob ntsig txog lub hlwb, xws li qaug dab peg. Lwm cov tshuaj tuaj yeem kho cov tsos mob uas tshwm sim los ntawm cov qog thiab cov qog loj hlob hauv ntau qhov ntawm lub cev.
• Kev Phais Mob : Qee zaum, kev phais mob yog qhov tsim nyog los tshem tawm cov qog uas tau tsim hauv lub cev.
• Kev kho mob tawv nqaij : Cov no tshem tawm cov qhov pom ntawm cov pob (tag nrho lossis ib feem) ntawm lossis hauv qab daim tawv nqaij.

Cov tshuaj

Nyob ntawm seb koj cov tsos mob li cas, koj tus kws kho mob kuj yuav sau ntawv kom noj lwm yam tshuaj. Txawm li cas los xij, cov no feem ntau nyob ntawm ntau yam, xws li koj cov tsos mob, keeb kwm kev noj qab haus huv, cov kev xav tau ntawm tus kheej, thiab kev nyiam.

Cov tshuaj sib txawv tuaj yeem pab kho cov tsos mob ntawm TSC. Muaj cov tshuaj uas ua rau qeeb, nres, lossis ua rau cov qog loj hlob qeeb. Lwm cov tshuaj uas siv ntau yog cov uas tiv thaiv kev qaug dab peg. Kev qaug dab peg yog ib qho ntawm cov tsos mob feem ntau thiab txaus ntshai ntawm TSC.

Kev phais mob

Cov qog nqaij hlav uas tshwm sim nrog TSC qee zaum tuaj yeem ua rau muaj teeb meem, nyob ntawm seb lawv tshwm sim qhov twg. Qee zaum, yuav tsum tau phais kom tshem tawm cov qog nqaij hlav uas ua rau muaj teeb meem rau ntau yam kabmob lossis lub cev. Koj tus kws kho mob tuaj yeem qhia koj ntxiv txog kev phais thiab lwm txoj kev kho mob uas muaj rau koj.

Kev kho mob tawv nqaij

Muaj ntau yam tsos mob ntawm TSC uas pom tseeb. Qhov no ua rau koj ntxhov siab, txaj muag, thiab txaj muag. Kws kho mob tawv nqaij tuaj yeem pab txo lossis tshem tawm cov kev hloov pauv ntawm daim tawv nqaij uas los nrog TSC. Txawm hais tias cov kev kho mob no feem ntau yog ib ntus xwb, tab sis lawv tuaj yeem ua qhov sib txawv loj rau koj txoj kev noj qab haus huv ntawm lub hlwb.

Qee cov piv txwv ntawm kev kho mob tawv nqaij rau cov tsos mob ntawm daim tawv nqaij uas cuam tshuam nrog TSC suav nrog:

• Kev siv cua txias heev los rhuav tshem cov ntaub so ntswg (cryoablation )
• Kev kho tawv nqaij laser resurfacing (kev kho tawv nqaij laser resurfacing)
• Dermabrasion los yog dermaplaning (scraping the surface of the skin)
• Kev rho tawm ( kev phais me me, zoo ib yam li tshem tawm cov cim yug me nyuam)
• Kev txiav tawv nqaij

Cov teeb meem/cov kev mob tshwm sim ntawm kev kho mob

Cov kev mob tshwm sim lossis teeb meem ntawm kev kho mob TSC sib txawv heev, tshwj xeeb tshaj yog vim muaj ntau yam tsos mob thiab kev xaiv kho mob sib txawv. Vim li no, koj tus kws kho mob tuaj yeem piav qhia rau koj zoo tshaj plaws txog cov kev mob tshwm sim lossis teeb meem uas koj yuav ntsib. Nws kuj tseem tuaj yeem qhia koj tias yuav siv sijhawm ntev npaum li cas los kho kom zoo.

Puas muaj peev xwm txo lossis tiv thaiv qhov kev pheej hmoo ntawm tuberous sclerosis (TSC)?

Qhov tseeb, tsis muaj ib txoj kev twg los tiv thaiv tau tus kab mob tuberous sclerosis (TSC) . Yog tias ib tug neeg hauv koj tsev neeg (niam txiv lossis kwv tij neej tsa) muaj TSC, kev sab laj txog noob caj noob ces tuaj yeem pab koj nkag siab txog qhov kev pheej hmoo ntawm koj tus menyuam yuav tau tus mob no thiab seb puas muaj cov kauj ruam twg uas koj ua tau los txo nws. Cov kws tshaj lij feem ntau pom zoo kom muaj kev sab laj no.

Yog tias koj muaj tus kab mob tuberous sclerosis (TSC) koj yuav xav tau dab tsi?

Muaj coob tus neeg uas muaj TSC xav tau kev kuaj duab tsis tu ncua, tshwj xeeb yog kev luam theej MRI, li ib lossis ob zaug hauv ib xyoos. Qhov no feem ntau pib thaum yau thiab txuas ntxiv mus txog thaum muaj hnub nyoog 21 xyoos. Ib txhia neeg xav tau kev luam theej tsis tu ncua thoob plaws lawv lub neej, los xyuas seb puas muaj cov qog tshiab lossis los saib xyuas cov qog uas twb muaj lawm.

Cov teebmeem ntawm TSC tuaj yeem sib txawv ntau nyob ntawm nws qhov hnyav:

• Cov mob me me : Cov neeg uas muaj mob me me yuav tsum tau noj tshuaj lossis tau txais kev kho mob tsis tu ncua, tab sis qhov mob no tsis cuam tshuam rau lawv lub neej. Cov neeg no feem ntau tuaj yeem cia siab tias yuav muaj sia nyob ntev ib yam li cov neeg uas tsis muaj TSC.
• Cov mob nruab nrab : Hauv cov mob nruab nrab, cov tsos mob yuav ua rau muaj kev cuam tshuam me ntsis. Txawm li cas los xij, nrog kev kho mob thiab kev kho mob tsis tu ncua, cov teebmeem no feem ntau tuaj yeem tswj tau. Cov neeg no feem ntau tuaj yeem cia siab tias yuav muaj lub neej ntev li qub lossis luv dua me ntsis.
• Cov mob hnyav : Cov neeg no yuav muaj kev tsis taus ntawm lub hlwb, qaug dab peg hnyav, lossis lwm yam teeb meem. Ib txhia yuav tsis tuaj yeem nyob tau ywj pheej, lossis yuav xav tau kev kho mob zoo rau feem ntau lossis tag nrho lawv lub neej.

Kab mob tuberous sclerosis (TSC) kav ntev npaum li cas?

Tuberous sclerosis (TSC) yog ib qho mob uas yuav kho tau mus tas li .

Kuv yuav saib xyuas kuv tus kheej li cas?

Yog koj tus kws kho mob sau ntawv kom noj tshuaj, koj yuav tsum noj raws li tau sau tseg. Tsis txhob tsum noj tshuaj yam tsis tau nrog koj tus kws kho mob tham. Yog koj tsum tam sim ntawd tej zaum yuav ua rau koj cov tsos mob rov qab los lossis mob zuj zus tuaj.

Lwm txoj kev uas koj yuav tsum tau saib xyuas koj tus kheej yuav txawv ntawm ib tus neeg mus rau ib tus neeg. Muaj ntau yam uas cuam tshuam rau qhov no. Koj tus kws kho mob yog tus neeg zoo tshaj plaws los muab kev taw qhia rau koj txog yam koj yuav tsum ua thiab ua tau los saib xyuas koj tus kheej thiab tswj koj tus mob.

Kuv yuav tsum mus ntsib kws kho mob thaum twg?

Yog koj muaj tus kab mob tuberous sclerosis (TSC), tej zaum koj yuav tsum tau mus ntsib kws kho mob tsis tu ncua thoob plaws koj lub neej. Qhov no tso cai rau koj tus kws kho mob saib xyuas koj tus mob thiab saib xyuas txhua yam kev hloov pauv. Ob qho no tseem ceeb heev rau kev tiv thaiv cov teeb meem loj uas tuaj yeem tshwm sim nrog TSC.

Kuv yuav tsum mus rau Chav Kho Mob Thaum Muaj Xwm Ceev (ETU) thaum twg?

Nyob ntawm seb koj cov tsos mob thiab qhov twg koj qaug dab peg, muaj qee cov cim qhia tias koj xav tau kev kho mob tam sim ntawd. Ib qho ntawm cov no feem ntau yog Status Epilepticus (SE) .

SE yog thaum koj muaj qaug dab peg uas kav ntev dua tsib feeb, lossis ob lossis ntau dua qaug dab peg sib law liag tsis muaj sijhawm rov zoo. SE yog xwm txheej ceev kho mob uas txaus ntshai rau lub neej . Yog tias koj nrog ib tus neeg uas qaug dab peg thiab muaj ib qho ntawm cov tsos mob no, koj yuav tsum hu rau 911 (lossis koj tus xov tooj xwm txheej ceev hauv zos) tam sim ntawd.

Lwm cov tsos mob uas yuav tsum tau kev kho mob yuav txawv. Koj tus kws kho mob tuaj yeem piav qhia rau koj zoo tshaj plaws txog cov tsos mob uas koj yuav tsum tau saib xyuas thiab koj tuaj yeem ua li cas yog tias koj ntsib lossis pom lawv.

Thaum kawg, tej yam uas yuav tsum nco ntsoov

Kab mob tuberous sclerosis complex (TSC), lossis tuberous sclerosis, yog ib yam mob caj ces tsis tshua muaj uas ua rau cov qog nqaij hlav tsis yog mob qog noj ntshav loj hlob hauv ntau qhov ntawm lub cev, tshwj xeeb tshaj yog lub hlwb lossis daim tawv nqaij.

Tsis txhob txhawj. Nrog kev nce qib hauv kev kho mob niaj hnub no thiab thev naus laus zis thaij duab, qhov mob no feem ntau tuaj yeem saib xyuas thiab kho raws li qhov xav tau thoob plaws hauv lub neej. Ntau tus neeg uas muaj TSC tuaj yeem ua neej ntev thiab noj qab nyob zoo.

Yog koj muaj lus nug lossis kev txhawj xeeb ntxiv txog qhov no, nco ntsoov nrog koj tus kws kho mob tham. Lawv yog cov uas tuaj yeem muab cov lus qhia tseeb thiab zoo tshaj plaws rau koj.

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