Lɛ wi lan mɔ bɔt Tuberous Sclerosis. Nɔ fred, lɛ wi tɔk!

Sɔntɛnde na wi layf, wi kin yɛri bɔt sik dɛn we wi nɔ go ebul fɔ imajin ɛn we strenj smɔl, nɔto so? Wɛl, wan sik we bɔku pipul dɛn nɔ yɛri bɔt, bɔt we rili impɔtant fɔ no bɔt, na Tuberous Sclerosis Complex (TSC) , ɔ jɔs Tuberous Sclerosis . Wetin kin apin pan dis na dat, tumbu ɔ tumbu we nɔ gɛt kansa, kin kam na difrɛn pat dɛn na yu bɔdi, mɔ na say dɛn lɛk di bren, skin, kidni, at, ɛn lɔng. Dis na sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. Bɔt nɔ wɔri, wi go tɔk bɔt ɔltin klia wan ɛn simpul wan.

Wetin rili na Tuberous Sclerosis?

Fɔ tɔk am simpul wan, tuberous sclerosis (TSC) na wan sik we nɔ kin apin so ɔltɛm. I kin mek tumbu dɛn we nɔ gɛt kansa fɔm na difrɛn pat dɛn na yu bɔdi, lɛk yu bren, yu skin, yu kidni, yu at, yu yay, ɛn yu lɔng. I impɔtant fɔ mɛmba se dɛn tumbu ya nɔto kansa . Dis min se dɛn nɔto denja tumbu we de skata frɔm wan pat na di bɔdi to ɔda pat. Bɔt dɛn tumbu ya kin mek pipul dɛn gɛt difrɛn wɛlbɔdi prɔblɛm dɛn, i kin dipen usay dɛn kin apin ɛn dɛn saiz.

Sɔm pipul dɛn nɔ kin afɛkt dis sik so bad bad wan. Dɛn kin liv nɔmal layf. Bɔt fɔ sɔm pipul dɛn, i kin tranga pasmak ɛn i kin mek dɛn gɛt difrɛn prɔblɛm dɛn. Dis sik kin kam smɔl smɔl. Sɔm sayn dɛn kin bigin we dɛn yɔŋ, bɔt ɔda wan dɛn kin tek lɔng lɔng tɛm fɔ sho. So, pɔrsin wae gɛt dis sik nid fɔ gɛt mɛrɛsin advays ɛn fɔ wach am fɔ ɔl in layf.

Udat dɛn kin afɛkt mɔ pan dis sik? Aw i kɔmɔn?

Tuberous sclerosis (TSC) na wan sik we kin de we dɛn bɔn pikin . Na lɛk af pan di pikin dɛn kin no se dɛn gɛt dis sik bay di tɛm we dɛn ol lɛk 7 mɔnt. Bɔt sɔntɛnde, de sik nɔr kin so klia, ɛn dɛn nɔr kin no bɔt am fɔ lɔng lɔng tɛm. Ivin if dɛn no bɔt dis sik we dɛn smɔl, nyu sayn dɛn kin sho as dɛn big.

Dis sik kin afɛkt ɛnibɔdi, ilɛksɛf na man ɔ uman, in trayb, ɔ etnik grup. Dat min se no patikyula grup nɔ de we kin gɛt am.

Imajin aw dis nɔ kin apin so ɔltɛm. Tuberous sclerosis (TSC) na rili wan sik we nɔ kin bɔku . Na lɛk 50,000 pipul dɛn nɔmɔ de na Amɛrika we gɛt dis sik. Ɔlsay na di wɔl, na lɛk wan milyɔn pipul dɛn de. So yu kin imajin aw dis sik nɔ kin apin so ɔltɛm.

Aw tuberous sclerosis (TSC) kin afɛkt di bɔdi?

di men ifekt we tuberous sclerosis (TSC) de gi na we di sεl dεm na di bכdi de gro tכgeda to sכm sכm sכm sכm sכm sכm sכm sכm dεm (tכmכr). Dis kin apin mɔ na di bren . Apat frɔm dat, yu kin gɛt chenj dɛn bak na yu skin, mɔ we yu rili yɔŋ. Infakt, bɔku tɛm, dɛn chenj ya we de apin na in skin na di fɔs sayn we de sho se pɔsin gɛt dis sik.

Nɔto dat nɔmɔ, bɔt tuberous sclerosis (TSC) kin afɛkt yu at ɛn kidni bak. i kכmכn fכ difrεn kayn lumps fכ fכm na dεn כgan dεm ya. I nɔ kin izi fɔ mek lumps fɔm na ɔda say dɛn.

Wetin na di sayn dɛm we de sho se yu gɛt dis sik? Aw dɛn kin sho dɛnsɛf?

Di sayn dɛm fɔ tuberous sclerosis (TSC) kin difrɛn bad bad wan dipen pan di ɔgan ɔ bɔdi pat we dɛn afɛkt. Dɛn kin sheb di sayn dɛm to tri men grup dɛm:

• Di sayn dɛm we gɛt fɔ du wit di bren
• Simptom dɛm we gɛt fɔ du wit di skin
• Ɔda chenj dɛn we kin apin insay di bɔdi

Naw, lɛ wi luk ɛni wan pan dɛn wan ya.

Di sayn dɛm we gɛt fɔ du wit di bren

di simptom dεm we de kכmכt na di bren kin apin we tכmכro כ kכtikal tכb dεm (hamartomas) fכm na di bren bikoz fכ tuberous sclerosis (TSC). Pan ɔl we dɛn tumbu ya nɔto kansa, dɛn kin mek di bren pwɛl ɛn i kin mek di bren nɔ wok fayn. Sɔm ɛgzampul dɛn na:

• sכbεpεndymal jayant sεl astrosaytoma (SEGA) : dis na tכmכro dεm we de fכm na di sכfayz fכ di bren, spεshal wan na di sכfayz fכ di sכm sכm wata we fulכp fכ di bren (vεntrikul) insay di bren. sכmtεm dεn kin blכk di fכlכ fכ di sεribrospaynal fכ fכlכ, we kin mek wata kכlכp insay εn rawnd di bren. Dɛn kɔl dis sik haydrosɛfalɔs .
• di kכtikal tכb dεm (hamartomas) : dεn ya na kכlכsta dεm we nכ de fכ kεnsar. dis grup dεm fכ sεl dεm de fכm insay di bren, nia usay dεn fכ de, bכt dεn de fכm sכm kayn we. Dis na bikɔs tumɔs sɛl dɛn dɔn fɔm ɛn nɔ gɛt bɛtɛ ples fɔ mek dɛn gro.

Bɔrku tɛm, tuberous sclerosis (TSC) kin mek ɔda kayn sik, we kin gɛt sɔm kayn simptom dɛm bak we gɛt fɔ du wit dis:

• Seizures : Dis na tin wae kin apun pasmak.
• Divεlכpmεnt delay εn mental disabiliti : Fכ egzampl, pikin kin gεt delay fכ tכk, waka, εn כda tin dεm kin apin bak fכ lan disabiliti.
• Kɔndishɔn dɛm wae gɛt fɔ du wit di bren divɛlɔpmɛnt: Kɔndishɔn dɛm lɛk ɔtizm spɛktrum disɔda ɔ atɛnshɔn-dɛfisit/haypa aktiviti disɔda (ADHD) .

Pan ɔl we di sik kin kam pan pɔsin we gɛt di sik we dɛn kɔl tuberous sclerosis (TSC), nɔto ɔlman we gɛt dis sik go gɛt am. I pɔsibul bak fɔ gɛt sik wae de mɛk pɔrsin fil lɛk yu wan wae nɔr gɛt dis maynia sik.

Simptom dɛm we gɛt fɔ du wit di skin

Bɔrku tɛm, di sayn dɛm na di skin na di fɔs sayn fɔ tuberous sclerosis (TSC). Masta sabi pipul dɛm se 90% pan di pipul dɛm wae gɛt dis sik kin gɛt wan ɔr mɔr pan dɛn tin ya:

• Ash lif spat : Dis na melanin na di skin.εria dεm we di pigmεnt sכmtεm (di pigmεnt we de gi di skin in kכla). Dɛn spat dɛn ya tan lɛk grey lif dɛn. Sɔmtɛm, i nɔ kin izi fɔ si dɛn pan pipul dɛn we gɛt layt skin. Dɛn spat dɛn ya de shayn ɔnda wan spɛshal kayn ɔltra vayolɛt (UV) layt .
• Konfeti mak : Dɛn wan ya kin tan lɛk frek. Bɔt pan ɔl we rɛgyula frekl dɛn kin dak pas di skin we de rawnd am, dɛn kɔnfɛti mak dɛn ya kin layt pas di skin we de rawnd am. Dɛn tin ya kin apin bak we i yɔŋ.
• Facial fibromas : Dis na tin dεm we nכ de gro we nכ de fכm pan di skin na di fes. we dεn kin big, כ we sεvεra de nia togeda, dεn kin apia lεk big fכmeshכn dεm we dεn kכl "plek." Dɛn kin gɛt dak kɔlɔ pas di skin we de rawnd dɛn.
• di fing nel dεm εn di tכn nel dεm : dεn tin ya lεk di fכs fibroma dεm, bכt dεn kin fכm rawnd כ כnda di finga nεl dεm na di finga dεm εn di fut dεm. Dɛn kin apia we dɛn de yɔŋ ɛn dɛn kin gro ɔlsay na dɛn layf.
• Shagreen pat dεm : Dis na εria dεm na di fayv tisu dεm we de fכm כnda di כtamost layεr na di skin (epidamis). Dɛn kin apin na di ɔda pat na di bɔdi we de dɔŋ. Dɛn tan lɛk ɔrɛnj ɔ grep in skin.

Mɛmba se, jɔs fɔ si dɛn spat ɔ bɔmp ya na yu skin nɔ min se yu gɛt tuberous sclerosis. I impɔtant fɔ mek dɔktɔ chɛk yu.

Ɔda chenj dɛn we kin apin insay di bɔdi

di tכmכro כ sist dεm we de apin wit tuberous sclerosis (TSC) kin apin na bכku כda pat dεm na di bכdi. Ɔda chenj dɛn kin apin bak. Sɔm pan dɛn na:

• di mכt chenj : di fibromas (tכmכr) de divεlכp insay di mכt, εn di pit dεm na di tit dεm bikoz di tut in εnamel dεm de lכs. dis chenj dεm na di tut inεmεl dεn kin si pan kכlכsכl כlman we gεt TSC. Di gɔm kin at ɛn blɔd bikɔs ɔf di lumps. di pit we di inεm de pit kin mek bak di kכva.
• di kidni sist : we dεn tin ya de divεlכp na di kidni dεm, i kin ambɔg di kidni fכ wok. Di sayn dɛm kin bi pen na di bak ɔ flank, blɔd na di urine, ɛn kidni ston. Sɔntɛnde, di kidni we nɔ de wok fayn ɛn wan kayn kidni kansa we dɛn kɔl rεnal sɛl kansa kin apin bak.
• Tכmכro dεm na di rεtina כ optik nεv dεm : dεn tכmכro dεm ya kin mek yu gεt prכblεm fכ si, bכt dis nכ kin kכmכn.
• di at tכmכro dεm (cardiac rhabdomyomas) : Dis dεm kin siriכs bכku pan bεlε pikin dεm. Di risk kin go dɔŋ wit di ej. Big big tumor kin blok blɔd flɔ tru di at, bɔt dis nɔ kin apin bak.
• di lכng nodul dεm : If dεn tin ya kin bi siriכs, dεn kin mek i at fכ brith.

Wetin kin mek pɔsin gɛt tuberous sclerosis (TSC)?

Tuberous sclerosis (TSC) na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Dis min se na di chenj (myutayshכn) dεm we de na wi DNA de kכz am . Bɔku sɛl dɛn na wi bɔdi kin sheb ɛn nyu sɛl dɛn kin tek dɛn ples. dis prכsεs na di protin dεm we de sכpres di tכmכro de kכntro am.

dis protin dεm de kכntro di rεt we di sεl dεm de sheb εn di sayz fכ di sεl dεm. Imajin wetin kin apin if dɛn prɔtin dɛn ya nɔ balans? Dɔn, sɛl dɛn we tu big, we tu bɔku, kin bigin fɔ gro. We dɛn nɔ gɛt say fɔ go, dɛn kin gro we dɛn nɔ ebul fɔ kɔntrol dɛnsɛf ɛn dɛn kin mek tumbu. Na dat kin apin pan tuberous sclerosis.

Dis na sɔntin we kɔmɔt frɔm jɛnɛreshɔn?

di jεnεtik mכtεshכn dεm we de mek yu gεt tuberous sclerosis (TSC) kin apin tu fכm dεm:

• Sporadik : dis na random mistek dεm we de apin rayt afta dεn bכn (dat na afta di sεl εn eg dכn jכyn fכ mek εmbriyo). I tan lɛk se pɔsin we nɔ rayt na buk we dɛn de print. Dɛn tin ya kin bɔku pas di kes dɛm we dɛn kin gɛt frɔm dɛn mama ɛn papa.
• Inherited : Na lɛk wan pat pan tri pan di wan dɛn we gɛt tuberous sclerosis (TSC) kin gɛt am frɔm dɛn mama ɔ papa.

Aw dɛn kin no se pɔsin gɛt tuberous sclerosis (TSC)?

Masta sabi bukman dɛn kin sheb di sayn ɛn sayn dɛm fɔ dis sik to tu men kategori: di men tin dɛm ɛn di smɔl tin dɛm . Fɔ mek dɛn no if yu gɛt tuberous sclerosis (TSC), yu fɔ gɛt tu ɔ mɔ men tin dɛn. Bikɔs di sik kin kam as tɛm de go, dɔktɔ kin klas yu sik as "possible TSC" if yu gɛt wan big tin ɔ tu smɔl tin nɔmɔ.

Di men tin dɛn we dɛn kin du

• At ɔl tri ashis lif spat (ɛvri spat fɔ at le 5 mm waid).
• Fɔ gɛt at le tu fes fibroma ɔ wan fibroma plek na di fes/ed.
• Fɔ gɛt at le wan finga nel ɔ fut nel fibroma.
• Fɔ gɛt at le wan shagreen pat.
• Fɔ gɛt mɔ pas wan retina lɛshɔn.
• di prεsεns fכ spεsifi k tisu dεm we de gro insay כ pan di sεf fכ di bren.
• Wan spɛshal kayn we fɔ gro na di at.
• Fɔ gɛt wan patikyula kayn tɔŋ we nɔ gɛt kansa (benign tumor) we de afɛkt di lɔng, kidni, ɔ limf no dɛm.

Smɔl smɔl tin dɛn

• Konfeti skin lesion.
• fכ gεt fכ כ mכr pit dεm na di εnamel fכ di tit dεm.
• Fɔ gɛt tu ɔ mɔ lumps insay di mɔt.
• Di nodul dɛn we de na di rɛtina.
• fכ gεt mכr dan wan sist na di kidni dεm.
• Lump dεm we nכ de kεnsar (benign growths) na כda כgan dεm כ εria dεm.

Test dɛn fɔ no if pɔsin gɛt di sik

Bikɔs tuberous sclerosis (TSC) kin mek yu gɛt difrɛn kayn sayn ɛn ifɛkt, bɔku tɛst dɛn de we dɛn kin du. Dɛn tɛst ya go difrɛn difrɛn wan fɔ di sayn dɛm wae yu gɛt. Yu dɔktɔ kin ɛksplen fayn fayn wan us tɛst yu nid ɛn wetin mek dɛn de du dɛn. Dis dɔŋ ya na sɔm pan di tɛst dɛm we dɛn kin du fɔ gɛt tuberous sclerosis (TSC). jεnεtik tεst na di las step fכ kכnfכm wan TSC diagnosis εn fכ no di spεsifi k mכtεshכn insay di TSC jin.

Test fɔ simptom dɛm we gɛt fɔ du wit di bren

If yu gɛt sɔm kayn sik wae gɛt fɔ du wit yu bren, mɔr lɛk if yu gɛt sik wae de mɛk yu sik (ɔ if pruf de fɔ se yu kin gɛt sik wae de mɛk yu gɛt sik), yu kin gɛt diagnostik imej ɛn ɔda tɛst dɛm. Dɛn skan ɛn tɛst dɛn ya na:

• CT skan (Kɔmpyut tomografi - CT skan) .
• MRI skan (Magnetik rεsכnans imej - MRI skan)
• EEG (Electroencephalogram - EEG) (Dis de tεst di ilektrikal aktiviti fכ di bren)

If dɔktɔ tink se yu gɛt prɔblɛm wit yu maynd, dɛn kin tɛl yu fɔ du sɔm patikyula tɛst dɛn we yu go ebul fɔ no bɔt. Dɛn tɛst ya kin ɛp fɔ no prɔblɛm wit aw yu bren ɛn aw yu de tink de wok. Dɛn tin ya kin bi prɔblɛm ɔ wok we gɛt fɔ du wit tin dɛn lɛk fɔ mɛmba, fɔ jɔj, ɛn fɔ disayd fɔ du sɔntin.

Test fɔ di sik dɛn we gɛt fɔ du wit di skin

Fɔ chɛk yu bɔdi rili impɔtant fɔ no if yu gɛt tuberous sclerosis (TSC). Bɔrku pan de sayn ɛn sayn dɛm fɔ dis sik kin si wae dɛn smɔl. Sɔm tɛst dɛn de we kin ɛp dɔktɔ fɔ no if yu gɛt TSC. Di wan dɛn we bɔku pipul dɛn kin gɛt na:

• Wud in lamp egzamin : Dis na tɛst we nɔ de invayd we de yuz ɔltra vayolɛt layt fɔ si if ashis lif spat dɛn de shayn.
• Skin biopsy : Dɛn kin tek wan smɔl pat pan di skin ɛn chɛk am.

Tεst fכ di chenj dεm we de insay di bכdi

Jεnεtik tεst na di ki tul fכ no TSC. bitwin 75% εn 95% pan di sik pipul dεm gεt mכtεshכn na di TSC1 כ TSC2 jin dεm. I pɔsibul fɔ gɛt di sik we yu nɔ gɛt muteshon we pɔsin kin no, bɔt dis nɔ kin apin so ɔltɛm.

bכku pan di chenj dεm we de apin wit TSC de bigin we pכsin de divεlכp lεk pikin insay di bεlε. Sɔntɛnde, dɔktɔ dɛn kin no dɛn chenj ya we dɛn de kia fɔ di pikin bifo dɛn bɔn pikin ɔltɛm, mɔ we dɛn de du ɔltra saund ɛgzamɛn, ɔ we dɛn de du CT ɔ MRI skan jɔs afta dɛn bɔn am.

Wetin na di tritmɛnt dɛm fɔ tuberous sclerosis (TSC)?

Tuberous sclerosis (TSC) nɔ kin ebul fɔ wɛl ɔl . Bɔt,Bɔku pan di kes dɛm kin gɛt tritmɛnt. Di tritmɛnt we dɛn kin pik kin dipen pan di kayn sik we yu gɛt. Di tritmɛnt dɛm wae dɛn kin yuse mɔr na:

• Mɛrɛsin : Mɛrɛsin kin ɛp fɔ bɔku pan di sayn dɛm fɔ TSC. Sɔm mɛrɛsin kin kɔntrol di sik dɛn we kin kam wit di bren, lɛk we pɔsin kin gɛt sik we i de fil. Ɔda mɛrɛsin kin trit di sayn dɛm wae kin kam wae pɔrsin gɛt tumbu ɛn grow na difrɛn pat dɛm na di bɔdi.
• Ɔpreshɔn : Sɔntɛnde, dɛn kin du ɔpreshɔn fɔ pul di tumbu dɛn we dɔn fɔm insay di bɔdi.
• Dεmatכlכji tritmεnt dεm : dεn ya de pul di pat dεm we yu kin si pan di bכmp (kכmplit כ pat) pan כ כnda di skin.

Di mɛrɛsin dɛn we dɛn kin yuz

Dipen pan yu sik, yu dɔktɔ kin gi yu ɔda mɛrɛsin bak. Bɔt bɔku tɛm, dɛn tin ya kin dipen pan bɔku tin, lɛk aw yu de fil, aw yu gɛt wɛlbɔdi, wetin yu nid, ɛn wetin yu lɛk.

Difrɛn kayn mɛrɛsin kin ɛp fɔ trit di sayn dɛm fɔ TSC. Mεdikal dεm de we de slo, stכp, כ shrink di tכmכro dεm we de gro. Wan ɔda mɛrɛsin we dɛn kin yuz na wan we de mek pɔsin nɔ gɛt sik. Sik na wan pan di kɔmɔn ɛn denja sayn dɛm fɔ TSC.

Ɔpreshɔn

di growth dεm we de apin wit TSC kin mek prכblεm sכmtεm, dipכnt pan usay dεn de apin. Sɔntɛnde, dɛn kin nid ɔpreshɔn fɔ pul di tin dɛn we de gro we de kɔz prɔblɛm fɔ difrɛn ɔgan ɔ bɔdi sistɛm dɛn. Yu dɔktɔ kin tɛl yu mɔ bɔt di ɔpreshɔn ɛn ɔda tritmɛnt dɛn we yu kin gɛt.

Di tritmɛnt dɛn we dɛn kin gi fɔ mɛn pipul dɛn we gɛt bɔdi

Bɔku pan di sayn dɛm fɔ TSC de si. Dis kin mek yu wɔri, shem, ɛn shem. Wan dɔktɔ we de mɛn di skin kin ɛp fɔ ridyus ɔ pul di chenj dɛn we kin apin na di skin we kin kam wit TSC. Pan ɔl we dɛn tritmɛnt ya na fɔ shɔt tɛm nɔmɔ, dɛn kin mek big difrɛns pan yu maynd wɛlbɔdi.

Sɔm ɛgzampul dɛm fɔ di tritmɛnt dɛm fɔ di skin fɔ di sik dɛm we gɛt fɔ du wit TSC na:

• Cryoablation ( dεstrukshכn fכ di tisu yuz ekstrim kol) .
• Laser skin resurfacing (laser skin risurfacing) .
• Dermabrasion ɔ dermaplaning (we de skrap di say we di skin de) .
• Excision ( na smɔl ɔpreshɔn, we fiba fɔ pul wan mak we dɛn bɔn) .
• Skin graft dɛn

Kɔmplikɛshɔn/sayd ifɛkt dɛm fɔ tritmɛnt

Di sayd ɛfɛkt ɔ kɔmplikeshɔn dɛm we kin kam pan TSC tritmɛnt kin difrɛn bad bad wan, mɔ bikɔs bɔku difrɛn simptom ɛn tritmɛnt opshɔn dɛn de. Fɔ dis rizin, yu dɔktɔ kin ɛksplen to yu fayn fayn wan us sayd ɛfɛkt ɔ prɔblɛm dɛn we yu kin gɛt. I kin tɛl yu bak aw lɔng i go tek fɔ mek yu wɛl afta yu dɔn gɛt tritmɛnt.

Yu tink se dɛn kin ridyus ɔ stɔp di risk fɔ gɛt tuberous sclerosis (TSC)?

Infakt, no we nɔ de fɔ mek dɛn nɔ gɛt tuberous sclerosis (TSC) . If pɔrsin na yu famili (mama ɔ papa ɔr brɔda ɛn sista) gɛt TSC, jenɛtik kɔyl kin ɛp yu fɔ ɔndastand di risk fɔ mek yu pikin gɛt di sik ɛn if ɛni step de we yu kin tek fɔ ridyus am. Bɔku tɛm, masta sabi bukman dɛn kin advays dis advays.

Wetin yu kin ɛkspɛkt if yu gɛt tuberous sclerosis (TSC)?

Bɔrku pipul dɛm wae gɛt TSC nid fɔ gɛt imej tɛst ɔltɛm, mɔr lɛk MRI skan, lɛk wan ɔr tu tɛm insay di ia. Dis kin bigin we dɛn smɔl ɛn i kin kɔntinyu te dɛn rich lɛk 21. Sɔm pipul dɛn kin nid fɔ skan ɔltɛm ɔlsay na dɛn layf, fɔ chɛk fɔ si if nyu tin dɛn de gro ɔ fɔ wach di tin dɛn we dɔn gro.

Di ifekt dɛm we TSC kin gɛt kin difrɛn bad bad wan dipen pan aw i siriɔs:

• Mild cases : Pipul wae gɛt mild case kin nid fɔ tek mɛrɛsin ɔr gɛt tritmɛnt ɔltɛm, bɔt de sik nɔr kin afɛkt dɛn layf bad bad wan. Dɛn pipul ya kin jɔs ɛkspɛkt fɔ liv di sem layf we pipul dɛn we nɔ gɛt TSC de liv.
• Mɔdaret kes dɛm : Insay mɔdaret kes dɛm, di sayn dɛm kin mek sɔm disrɔpshɔn. Bɔt if dɛn gɛt tritmɛnt ɛn dɛn kin gi dɛn mɛrɛsin ɔltɛm, bɔku tɛm dɛn kin ebul fɔ kɔntrol dɛn tin ya. Bɔrku tɛm, dɛn pipul ya kin ɛkspɛkt fɔ liv nɔrmal layf ɔr fɔ shɔt smɔl.
• Sivεr kεys : Dɛn pipul ya kin gɛt disabled intellectual disability, siriɔs epilepsy, ɔr ɔda prɔblɛm. Sɔm kin nɔr kin ebul fɔ liv fɔ dɛnsɛf, ɔr kin nid fɔ gɛt skilful mɛdikal kia fɔ bɔrku ɔr ɔl dɛn layf.

Aw lɔŋ tuberous sclerosis (TSC) kin las?

Tuberous sclerosis (TSC) na wan sik we go de sote go ɛn we go de fɔ ɔl in layf .

Aw a kin kia fɔ misɛf?

If yu dɔktɔ tɛl yu fɔ tek mɛrɛsin, yu fɔ tek am jɔs lɛk aw dɛn tɛl yu fɔ tek am. Nɔ stɔp fɔ tek di mɛrɛsin we yu nɔ tɔk to yu dɔktɔ. If yu stɔp am wantɛm wantɛm, dat kin mek yu gɛt mɔ sik fɔ kam bak ɔr de wɔs.

Di ɔda we dɛn we yu fɔ kia fɔ yusɛf kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Bɔku tin dɛn kin afɛkt dis. Yu dɔktɔ na di bɛst pɔsin fɔ gi yu gayd fɔ wetin yu fɔ du ɛn wetin yu kin du fɔ kia fɔ yusɛf ɛn fɔ kɔntrol yu sik.

Ustɛm a fɔ go to di dɔktɔ?

If yu gɛt tuberous sclerosis (TSC), yu go nid fɔ go to dɔktɔ ɔltɛm ɔlsay na yu layf. Dis kin mek yu dɔktɔ ebul fɔ wach yu kɔndishɔn ɛn wach fɔ ɛni chenj. Dɛn tu tin ya rili impɔtant fɔ mek dɛn nɔ gɛt siriɔs prɔblɛm dɛn we kin apin wit TSC.

Ustɛm a fɔ go na di Imejɛnsi Dipatmɛnt (ETU) ?

Dipen pan yu sayn dɛm ɛn usay yu sik de, sɔm sayn dɛm de wae de sho se yu nid fɔ go to dɔktɔ kwik kwik wan. Wan pan dɛn tin ya we bɔku pipul dɛn kin gɛt na Status Epilepticus (SE) .

SE na we yu gɛt sik we de te pas fayv minit, ɔ tu ɔ mɔ sik dɛn we de kam insay wan row we nɔ gɛt tɛm fɔ wɛl. SE na wan mɛdikal imejensi we kin mek pɔsin in layf de pan denja . If yu de wit pɔsin we gɛt sik ɛn gɛt ɛni wan pan dɛn sayn ya, yu fɔ kɔl 911 (ɔ yu lokal imejensi nɔmba) wantɛm wantɛm.

Ɔda sayn dɛm wae kin nid fɔ go to dɔktɔ kin difrɛn. Yu dɔktɔ kin ɛksplen to yu fayn fayn wan bɔt di sayn dɛm wae yu fɔ luk fɔ ɛn wetin yu kin du if yu gɛt ɔr si dɛn.

Fɔ dɔn, tin dɛn we wi fɔ mɛmba

Tuberous sclerosis complex (TSC), ɔ tuberous sclerosis, na wan jenɛtik kɔndishɔn we nɔ kin apin so ɔltɛm we kin mek tin dɛn we nɔ gɛt kansa gro na difrɛn pat dɛn na di bɔdi, mɔ na di bren ɔ di skin.

Nɔ wɔri. Wit di advans na di modna mεdisin εn imej tεknכlכji, bכku tεm dεn kin mכnitor dis kכndyushכn εn trit as nid de כlsay na layf. Bɔrku pipul dɛm wae gɛt TSC kin liv lɔng, wɛl bɔdi layf.

If yu gɛt ɛni ɔda kwɛstyɔn ɔ wɔri bɔt dis, mek shɔ se yu tɔk to yu dɔktɔ. Na dɛn kin gi yu di kɔrɛkt ɛn di bɛst advays.

` Tuberous sclerosis, jεnεtik sik dεm, bren tכmכro, skin spat, siiz, divεlכpmεnt delay, tritmεnt