Sɔntɛm yu bin de fred we yu notis sɔm layt kɔlɔ spat dɛn wantɛm wantɛm na yu smɔl pikin in bɔdi. Ɔ yu kin dɔn wɔri bɔt wan sayn lɛk sik we de kam pan yu fɔ natin. Sɔntɛnde, dɛn tin ya kin bi sayn fɔ wan sik we nɔ kin bɔku we dɛn kɔl Tuberous Sclerosis Complex (TSC). Fɔs, nɔ panik. Wae yu dɔn ɔndastand dis klia wan, yu kin liv fayn fayn wan wit dis sik. Lɛ wi tɔk bɔt ɔltin insay simpul wɔd dɛn.
Fɔ tɔk am simpul wan, wetin na Tuberous Sclerosis Complex (TSC)?
Tink bɔt dis we: di sɛl dɛn na wi bɔdi tan lɛk wokman dɛn we de wok. Dɛn kin sheb ɛn gro we dɛn nid, ɛn afta dat dɛn kin stɔp fɔ sheb we dɛn dɔn. bכt pan pכsin we gεt TSC, sכm sכm difεkt de na di prכsεs we de kכntro dεn sεl divεlכpmεnt dεm ya. So, instead fɔ stɔp usay dɛn fɔ stɔp, di sɛl dɛn kin kɔntinyu fɔ sheb.
We di sɛl dɛn sheb dis kayn we we dɛn nɔ ebul fɔ kɔntrol, tumbu dɛn kin kam na difrɛn pat dɛn na di bɔdi, fɔ ɛgzampul, na di bren, di kidni dɛn , di at , di lɔng dɛn , di skin, ɛn di yay dɛn. Di impɔtant tin we yu nid fɔ no ya na dat dɛn tumbu ya nɔto kansa . Bɔt dɛn kin kɔz difrɛn prɔblɛm dɛn dipen pan usay dɛn fɔm. Na lɛk wan milyɔn to tu milyɔn pipul dɛn ɔlsay na di wɔl de liv wit dis sik. Di gud nyus na dat, gud tritmɛnt dɛn de tide fɔ kɔntrol dɛn sik ya ɛn fɔ mek di tumbu dɛn smɔl.
Wetin na di patikyula tin we kin mek pɔsin gɛt TSC?
di men rizin fכ dis na di chenj (mכtεshכn) na wi jin dεm . Dis kin apin tu we dɛn.
1. Rεndכm jεnεtik chenj: fכ bכku pipul dεm, lεk tu-tכd, TSC nכ de inhεrit. i kin kכz bay we di jin dεm chenj random we di mama εn papa in sεl dεm kam togeda fכ mek pikin, כ we di pikin de divεlכp lεk εmbrayo.
2. Fɔ gɛt di sik frɔm mama ɛn papa: Na lɛk wan pat pan tri pipul dɛn kin gɛt di sik frɔm dɛn mama ɛn papa. If wan mama ɔ papa gɛt TSC, dɛn pikin gɛt 50% chans fɔ gɛt di sik.
Wetin na di sayn dɛm we de sho se yu gɛt dis sik? Yu tink se dɛn na di sem fɔ ɔlman?
Nɔ, di sayn dɛm fɔ TSC kin difrɛn bad bad wan frɔm wan pɔsin to ɔda pɔsin. Ɛn dɛn sayn ya kin chenj as tɛm de go. Sɔm pipul dɛn kin bigin fɔ sho di sik lɛk aw dɛn bɔn dɛn. Fɔ ɔda pipul dɛn, dɛn kin apin leta. Di sayn dɛm dipen pan di say, di sayz, ɛn di nɔmba fɔ di tumbu dɛm.
Fɔ mek i izi fɔ ɔndastand, lɛ wi si aw dis kin afɛkt difrɛn pat dɛn na di bɔdi.
| Di pat na di bɔdi we dɛn afɛkt | Sɔm sayn dɛn we kin apin |
|---|---|
| Kanda | Dis na di sayn dɛm wae kin kam pan pɔrsin. Yu kin si tin dɛn lɛk layt kɔlɔ spat dɛn na yu bɔdi (hypopigmented macules), rɛd, akni-layk bɔmp dɛn na yu fes (fes angiofibromas), tik tik skin pat dɛn na yu fɔrɛst, ɛn smɔl smɔl bɔmp dɛn rawnd di nel dɛn. |
| Bren | Di sik kin kam pan pɔsin we gɛt tumbu dɛn na di bren. Di chenj na di bihayvya (we yu kin vɛks bɔku tɛm, yu kin wɔri), yu kin gɛt prɔblɛm wit yu slip, yu ed kin at, yu kin gɛt nɔys, ɛn yu kin delay fɔ divɛlɔp lɛk ɔtizm. |
| Kidni dɛn | we di tכmכro dεm fכm na di kidni dεm, dεn kin bכku bכku wan. Kɔndishɔn lɛk ay blɔd prɛshɔn ɛn blɔd we de kɔmɔt insay kin apin. |
| At | di at tכmכro dεm kin fכm we wi sכm pikin εn i kin shrink as wi de ol. Bɔt sɔntɛnde dɛn kin mek di at bit nɔ de bit ɔltɛm (arrhythmias) ɔ blɔd kin blok. |
| Lɔng | Lung tumor kin mek yu nɔ blo fayn ivin if yu ɛksesaiz smɔl. Yu kin kɔf ɔ ivin yu lɔng we dɔn fɔdɔm. |
| Yay | Tumɔs dɛn we de insay di yay kin mek yu nɔ si fayn ɔ yu kin si tu tɛm. |
Aw di dɔktɔ kin no dis sik klia wan?
Bikɔs di sayn dɛm fɔ dis sik kin difrɛn, sɔmtɛm i kin tranga smɔl fɔ no bɔt dis sik. Yu dɔktɔ go tɔk to yu fayn fayn wan fɔs ɛn aks yu bɔt di ditil dɛm. Fɔ ɛgzampul:
- Wetin na di fɔs difrɛns we yu notis? Ustɛm i bigin?
- Yu ɔ yu pikin dɔn ɛva gɛt sik we dɛn kɔl seizure ? Wetin kin apin we i apin? Aw lɔng i dɔn tek?
- Aw ɔltɛm yu kin gɛt ed we de at?
- Ɛni ɔda pɔsin na di famili gɛt sik ɔ TSC?
Afta dat, di dɔktɔ go chɛk yu skin ɛn yu yay ɛn rifer yu fɔ sɔm ɔda tɛst dɛn if nid de.
- CT Scan : Dɛn kin yuz sɔm X-ray fɔ tek ditayli pikchɔ dɛn bɔt di insay pat na di bɔdi. Dis kin ɛp fɔ fɛn tumbu dɛn.
- MRI Skan: Dis kin mek yu gɛt klia, mɔ ditayli pikchɔ dɛn pas CT skan. I kin ivin luk di wata we de fכlכ na di bren εn di spεnal kכd. Sɔntɛnde, dɛn kin put spɛshal day fɔ mek di pikchɔ dɛn klia.
- Echocardiogram: Dis na ɔltra saund tɛst fɔ di at. I kin chɛk fɔ si if yu gɛt tumbu ɛn ɔda chenj dɛn na di at.
- Jin tɛst: Dis tɛst, we dɛn kin du pan blɔd sɛmpul, kin rili kɔnfɔm if yu gɛt TSC.
Wetin na di tritmɛnt dɛn we yu kin gɛt?
Di tritmɛnt dipen pan di sayn dɛm we yu gɛt ɛn usay di tumbu dɛn de. Di men gol fɔ dɔktɔ na fɔ kɔntrol yu sik ɛn ɛp yu fɔ liv fayn layf.
- fכ di kidni dεm: dεn kin gi mεdisin dεm (lεk `everolimus`) fכ blok di bכdi saplai to di kidni tכmכro dεm כ fכ shrink dεm. Sɔntɛnde, dɛn kin nid fɔ pul di tumbu dɛn wit ɔpreshɔn. If i siriɔs, i kin nid fɔ mek dɛn du dayalaysis ɔ fɔ transplant di kidni.
- Fɔ di bren: Dɛn kin mek sɔm tumbu dɛn na di bren smɔl wit mɛrɛsin. Speshal mɛrɛsin dɛn de fɔ kɔntrol di sik we pɔsin kin gɛt. Dɛn kin pul sɔm tumbu dɛn bay we dɛn de du ɔpreshɔn. We dɛn trit pikin in sik we de mek i sik kwik kwik wan, i kin ɛp in bren fɔ divɛlɔp ɛn lan bɔku tin.
- Fɔ di lɔng dɛn: Dɛn kin gi sɔm pipul dɛn we gɛt prɔblɛm wit dɛn lɔng, drɔgs we de afɛkt di imyun sistɛm, lɛk sirolimus.
- Fɔ di skin: Dɛn kin mek di skin bɔmp ɛn blemish smol wit tin dɛn lɛk laser tritmɛnt (dermabrasion) bifo dɛn big.
Di tin we impɔtant pas ɔl na fɔ kɔntinyu fɔ tɔk to yu dɔktɔ ɔltɛm so dat yu go ebul fɔ mek di tritmɛnt plan we go fayn fɔ yu.
Tin dɛm we yu fɔ no bɔt we yu de liv wit TSC
Fɔ liv wit wan sik wae nɔr de mɛn lɛk dis kin tranga yu maynd, bɔt if yu de mɛn yu fayn fayn wan, yu kin liv yu layf fayn fayn wan.
- Tek kia ɔf yusɛf: Pe atɛnshɔn gud wan to di chenj dɛn we de apin na yu bɔdi. Tɛl yu dɔktɔ wantɛm wantɛm bɔt ɛni nyu sayn we yu gɛt. Tek yu mɛrɛsin dɛn di rayt tɛm ɛn nɔ mis yu dɔktɔ in apɔntinmɛnt.
- Rɛdi fɔ ɛnitin we go apin to yu: Tɔk to yu dɔktɔ fɔ mek i no klia wan bɔt wetin fɔ du we ɛnitin apin ɛn ustɛm fɔ go na di ETU (Imergency Treatment Unit) .
- Mek yu pikin bi pikin: If yu pikin gɛt TSC, nɔ fɔgɛt se dɛn stil na pikin. Mek ples usay dɛn go ebul fɔ ple, lan, ɛn gladi.
- Sɔpɔt frɔm yu fambul ɛn padi dɛn: Tɔk to yu fambul ɛn yu tayt padi dɛn bɔt dis tin we de apin. Aks dɛn aw dɛn go ɛp yu.
- Mental hεlth: Na nɔrmal tin fɔ fil strɛs ɛn sɔri sɔmtɛm. If yu fil dis kayn we, nɔ shem fɔ aks pɔsin we de advays yu fɔ ɛp yu.
Pan ɔl we nɔr stil gɛt kɔmplit mɛrɛsin fɔ TSC, wit di rayt tritmɛnt ɛn manejmɛnt, bɔrku pipul dɛm wae gɛt dis sik kin liv nɔrmal, aktif, ɛn indipɛndɛnt layf.
Mɛsej we dɛn kin kɛr go na os
- Tuberous Sclerosis Complex (TSC) na wan jεnεtik kכndyushכn we de mek tכmכro dεm we nכ de fכm na difrεn pat dεm na di bכdi.
- Di sayn dɛm kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Skin rash, seizure, ɛn divɛlɔpmɛnt delay na kɔmɔn tin.
- Pan ɔl we no kɔmplit mɛrɛsin nɔ de fɔ dis, fayn tritmɛnt dɛn de tide we go ebul fɔ kɔntrol di sik dɛn, mek di tumbu dɛn smɔl, ɛn ɛp yu fɔ liv nɔmal layf.
- If yu notis ɛni chenj we nɔ kɔmɔn na yu ɔ yu pikin in bɔdi, go to yu dɔktɔ wantɛm wantɛm fɔ advays.
- If dɛn gɛt di rayt tritmɛnt ɛn manejmɛnt, bɔku pipul dɛn we gɛt TSC kin liv aktif, indipɛndɛnt, ɛn fulfil layf.
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