Yu dɔn ɛva notis se di we aw yu pikin in fes, mɔ di yay ɛn aybrɔw, nɔ kɔmɔn smɔl? Ɔ yu dɔn notis se yu pikin kin gɛt sɔm tin dɛn we kin mek i nɔ ebul fɔ gro ɔ in mɔsul dɛn kin wik? Na nɔmal tin fɔ mek mama ɛn papa dɛn fred smɔl we dɛn si tin dɛn lɛk dis. Tide wi go tɔk bɔt Kabuki Syndrome, we na wan sik we nɔ kin apin so ɔltɛm we de sho dɛn kayn sik ya.
Wetin mek dɛn kɔl am ‘Kabuki’? Aw dɛn bin kam fɔ no dis?
Dis stori bigin na Jepan insay di ia 1960. Tu tim fɔ dɔktɔ dɛn we bin de de bin si wan grup we gɛt pikin dɛn we gɛt strenj sayn dɛn, we nɔ gɛt natin fɔ du wit dɛnsɛf. Dɛn pikin dɛn ya bin gɛt spɛshal luk na dɛn fes. Dɛn aybrɔw dɛn bin kɔba ɔp, dɛn aylash dɛn bin rili tik, ɛn dɛn yay dɛn bin lɔng .
Imajin, aktɔ dɛn we de ple tradishɔnal Japan "kabuki" ple dɛn kin wɛr spɛshal mek-ap fɔ aksɛntuayt dɛn tin ya. So, bikɔs ɔf di sem tin bitwin di we aw dɛn pikin ya de luk na dɛn fes ɛn di mek-ap we di kabuki aktɔ dɛn gɛt, wan dɔktɔ bin gi di sik di nem “kabuki mek-ap sindrom.” Leta, dɛn bin shɔt am to "Kabuki Syndrome (KS).
Fɔs, dɛn bin de tink se na Jepan nɔmɔ dis sik. Bɔt leta, dɛn bin fɛn pikin dɛn we gɛt dis sik ɔlsay na di wɔl, bitwin difrɛn etnik grup dɛn. Dis na tin we nɔ kin apin so ɔltɛm. Na lɛk wan pan ɛvri 32,000 pikin dɛm wae dɛn bɔn wit dis sik kin gɛt dis sik.
Wetin rili na Kabuki Sindrom?
Fɔ tɔk am simpul wan, Kabuki sindrom na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Dat min se na bikɔs di jin dɛn we de na wi bɔdi chenj. Na wan sik we kin apin we dɛn bɔn am. Sɔm sayn dɛn kin si am jɔs afta dɛn bɔn am. Ɔda wan dɛn kin apia as di pikin de big.
De impɔtant tin na dat nɔr to ɔl pikin dɛm wae gɛt dis sik go gɛt di sem sɛt ɔf sayn dɛm. Ɛnibɔdi kin gɛt difrɛn kɔmbayn pan di sayn dɛm.
Sɔntɛnde, i kin at fɔ no kɔrɛkt wan bɔt wan sik we nɔ kin bɔku lɛk dis, bikɔs bɔku dɔktɔ dɛn nɔ kin dɔn si pɔsin lɛk dis na dɛn wok. Dɔn bak, sɔm pan de sayn dɛm kin fiba ɔda sik dɛm, wae kin mek i nɔr izi fɔ no di sik.
Wetin na di men sayn dɛm fɔ dis sik?
Apat frɔm di difrɛn difrɛn tin dɛn we wi bin dɔn tɔk bɔt na in fes, bɔku ɔda tin dɛn de we wi kin si. Lɛ wi ɔndastand dɛn klia wan na wan tebul.
| Tayp we gɛt kwaliti dɛn | Tin dɛn fɔ si |
|---|---|
| Fes ɛn ed gɛt fɔ du wit am |
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| Skel ɛn mɔsul dɛn | |
| Grɔw ɛn bɔdi sistɛm dɛn |
Yu tink se difrɛns de pan di sɛns ɛn di we aw pipul dɛn de biev?
Yɛs, bɔku pan dɛn pikin ya kin gɛt prɔblɛm wit dɛn maynd . Dɛn kin gɛt bak divɛlɔpmɛnt delay lɛk fɔ tɔk ɛn waka.
Sɔm kayn bihayvya kin tan lɛk tin dɛm lɛk ɔtizm ɔr OCD (Obsessive-Compulsive Disorder). Fɔ ɛgzampul:
- Fɔ tray ɔltɛm fɔ put tin dɛn na yu mɔt ɛn chew dɛn.
- Ɔva riakshɔn to sawnd ɔ ɔda tin dɛn we de mek pɔsin want fɔ du sɔntin.
- Rijek fɔ it dɛn we gɛt sɔm teys ɔ tɛkstɔr.
As di pikin de ol, dɛn kin sho sayn dɛm fɔ sɔm kayn tin lɛk fɔ wɔri ɔr pwɛl hat.
Bɔt dɛn pikin ya gɛt spɛshal abiliti dɛn bak. Bɔku tɛm, mama ɛn papa dɛn kin tɔk se dɛn pikin ya lɛk myuzik.Dɛn gɛt wɔndaful abiliti fɔ mɛmba sɔm siŋ dɛn. Dɔn bak, sɔm kin gɛt spɛshal abiliti fɔ mɛmba dɛn fes ɛn deti.
Wetin na di rizin fɔ dis? Jɛnɛtiks...
Sayɛnsman dɛn dɔn no te naw, tu men tin dɛn we kin mek pɔsin gɛt dis sik.
1. mכtεshכn na di KMT2D jin: Dis na di kכz fכ bכt 75% pan di pipul dεm we gεt Kabuki sεndrכm.
2. mכtεshכn na di KDM6A jin: lεk 9% pan di pipul dεm we nכ gεt di KMT2D mכtεshכn gεt dis mכtεshכn.
bכku tεm, dis jεnεtik mכtεshכn na nyu mכtεshכn we de apin na di pikin in bכdi. Dat min se, i nɔ gɛt frɔm di mama ɔ di papa. Bɔt, na smɔl tɛm nɔmɔ di pikin kin gɛt dis sik frɔm wan pan di mama ɛn papa.
Aw dɛn kin trit am?
Fɔs, no mɛrɛsin nɔ de fɔ mɛn di sik we dɛn kɔl Kabuki syndrome . Nɔto kɔndishɔn we go dɔn as di pikin de gro. Bɔt if dɛn no di pikin kwik kwik wan ɛn if dɛn gi di pikin di rayt tritmɛnt ɛn sɔpɔt am, dat kin ɛp fɔ liv bɛtɛ layf.
Di tritmɛnt we dɛn kin pik kin dipen pan di patikyula sayn ɛn prɔblɛm dɛn we di pikin gɛt, ɛn i kin nid fɔ gɛt ɛp frɔm difrɛn spɛshal pipul dɛn ɛn tritmɛnt pipul dɛn.
| Mɛdikal ɛp we dɛn kin nid | Tɛrapi savis dɛm wae kin nid fɔ de |
|---|---|
|
We i kam pan di layf we dɛn pikin ya kin liv, di sik we dɛn kɔl Kabuki syndrome insɛf nɔ kin mek dɛn layf shɔt. Bɔt if siriɔs tin dɛn de we gɛt fɔ du wit am, lɛk at sik ɔ kidni prɔblɛm, dɛn kin ambɔg pɔsin in layf. Na dat mek i rili impɔtant fɔ de wach di dɔktɔ dɛn ɔltɛm .
Skul layf ɛn big pɔsin
Dɛn pikin ya kin go skul. Bɔt dɛn nid spɛshal edyukeshɔn plan we dɛn mek fɔ wetin dɛn nid. Sɔntɛm dɛn nid spɛshal ɛdyukeshɔn ticha fɔ sɔpɔt dɛn. Sɔm pikin dɛn kin ebul fɔ tek pat bak pan spɔt.
I nɔ kin izi fɔ tɔk klia wan aw dɛn layf go tan lɛk we dɛn dɔn big, bikɔs di kayn sik we dɛn kin gɛt kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Sɔm pipul dɛn we de wok fayn kin ebul fɔ liv fɔ dɛnsɛf ɛn dɛn kin ivin mared.
Mɛsej we dɛn kin kɛr go na os
- Kabuki sindrom na wan sik we nɔ kin apin so ɔltɛm, we pɔsin kin bɔn wit in jɛnɛtiks. Wi nɔ nid fɔ fred am, bɔt i impɔtant fɔ mek wi no.
- difrεnt fכs fכs fכs, mכsul dεm we wik, εn di delay fכ divεlכpmεnt na di men sayn dεm.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn dis sik ɔl, if dɛn no di pikin kwik kwik wan ɛn gi am di rayt tritmɛnt ɛn tritmɛnt savis, dat kin rili ɛp fɔ mek di pikin in layf bɛtɛ.
- Ɔl pikin difrɛn, so wok togɛda wit yu dɔktɔ ɛn ɔda spɛshal pipul dɛn fɔ ɔndastand us sɔpɔt yu pikin nid.
- Pan ɔl we dɛn pikin ya gɛt prɔblɛm dɛn, dɛn kin gɛt lɔv, myuzik, ɛn bɔku ɔda tin dɛn na layf. Di tin we impɔtant pas ɔl na fɔ gi dɛn lɔv ɛn sɔpɔt.
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