Yu smɔl pikin rili lɛk fɔ spɛn tɛm wit ɔda pipul dɛn? Na pɔsin we rili lɛk pɔsin ɛn we de smayl ɛn tɔk to ɔlman we i si? Na di sem tɛm, sɔntɛnde, smɔl divɛlɔpmɛnt kin delay ɔr kin gɛt prɔblɛm fɔ lan? Sɔntɛnde, biɛn dɛn kayn kwaliti ya, wan sik kin de we nɔ kin apin so ɔltɛm we dɛn kɔl Williams Syndrome. Nɔ fred we yu yɛri dis nem. Dis na sɔntin we wi nid fɔ tɔk bɔt ɛn ɔndastand. Tide, wi go tɔk bɔt ɔltin simpul we we yu go ɔndastand.
Fɔ tɔk am simpul wan, wetin na di sik we dɛn kɔl Williams Syndrome?
Wiliamz sindrom, we sɔm pipul dɛn kin kɔl Wiliamz-Byuren sindrom, na wan sik we nɔ kin apin so ɔltɛm we dɛn bɔn am. I de afɛkt di nyurolɔjik divɛlɔpmɛnt. Pikin dɛm we gɛt dis sik kin gɛt difrɛn we aw dɛn de luk, dɛn kin delay fɔ divɛlɔp, dɛn nɔ kin ebul fɔ lan, ɛn dɛn kin gɛt prɔblɛm wit dɛn at ɛn blɔd.
Imajin se wi bɔdi na big buk we de sho aw fɔ du tin. Dis instrɔkshɔn manyual gɛt jin dɛn. Dɛn jin ya de insay di kromozom dɛn. Wi gɛt 23 pe kromozom dɛn, we na 46 ɔl togɛda . Pɔsin we gɛt Williams syndrome gɛt smɔl pat we nɔ de na di kromozom 7. I tan lɛk wan pej we nɔ de na da instrɔkshɔn manyual de. Bikɔs dis pej nɔ de, sɔm pan di wok dɛn we di bɔdi de du ɛn di divɛlɔpmɛnt kin apin difrɛn we. Na dat wi kin kɔl Williams syndrome.
Di impɔtant tin na dat, dis nɔto sɔntin we mama ɛn papa kin gɛt frɔm pikin dɛn. Dis na random chenj na di jenɛtik mek-ap. So nɔ blem yusɛf fɔ dis.
Wetin dis tin kin apin to di pikin?
Nɔto ɔl pikin we gɛt dis sik na di sem. De sik kin difrɛn frɔm pɔrsin to ɔda pɔrsin. Bɔt sɔm tin dɛn de we kin apin we pipul dɛn kin gɛt dis sik. Lɛ wi brok dɛn tin ya.
Di kwaliti dɛn we pɔsin gɛt na in bɔdi ɛn di we aw i tan
Dɛn pikin ya kin rili fayn, we nɔ gɛt wan kɔmpitishɔn.
| Di kwaliti we pɔsin gɛt | Tɔk bɔt |
|---|---|
| Fes | Ful chɛk, wayd mɔt, prominɛnt lip, smɔl nos we tɔn ɔp, smɔl chin. |
| Yay | yu kin si wan skin fold (epicanthal folds) na di insay kכna na di yay. |
| Tit | Smɔl tit, gap bitwin tit, tit we nɔ de, ɔ inɛmel we wik. |
| Ayt | Bɔku pipul dɛn ayt shɔt pas di avɛrej. Di grow kin slo we i smɔl. |
Fɔ gro ɛn fɔ biev
Dɛn pikin ya kin tek sɔm tɛm fɔ rich sɔm divɛlopmɛnt maylston dɛn, bɔt dɛn kin gɛt spɛshal abiliti dɛn bak.
- Fɔ tɔk: Sɔntɛm dɛn kin let smɔl fɔ bigin tɔk, bɔt we dɛn dɔn tɔk, dɛn kin sabi fɔ tɔk fayn fayn wan . Dɛn rili sabi fɔ tɔk fayn ɛn fɔ tɔk bɔt tin dɛn.
- Muvmεnt: Bikɔs di mכsul dεm tכn (hypotonia), i kin tek lכng pas כda pikin dεm fכ lan tin dεm lεk fכ sidon εn waka.
- Lanin: Dɛn kin gɛt sɔm prɔblɛm fɔ lan nɔmba, lɛta, ɛn ɔndastand spɛs (ɔp, dɔŋ, nia, fa). Bɔt dɛn gɛt fayn fayn mɛmori .
- Sociability: Dis na di tin we de sho se dɛn pikin ya kin bi . Dɛn rili lɛk wi, dɛn lɛk wi, ɛn dɛn gɛt sɔri-at. I nɔ kin izi fɔ dɛn fɔ no strenja dɛn, so dɛn kin mek padi wit ɛnibɔdi kwik kwik wan. Sɔmtɛm dɛn kin ivin gɛt pasmak wɔri ɔr frayd fɔ sɔm tin dɛm (phobias).
Ɔda wɛlbɔdi prɔblɛm dɛn
Dis sik kin mek yu gɛt ɔda prɔblɛm dɛn bak wit yu wɛlbɔdi. I impɔtant fɔ no bɔt dɛn tin ya.
- At sik: Dis na di tin we impɔtant pas ɔl fɔ wach fɔ . di big bכdi we kכnεkt to di at kin sכmtεm (stenosis) na kכmכn tin. Dis kin mek yu gɛt tin dɛn lɛk ay blɔd prɛshɔn ɛn at bit we nɔ de bit ɔltɛm (arrhythmia).
- di lεvεl fכ di kalsiכm: di lεvεl fכ di kalsiכm na di bכdi εn di urine kin bכku.
- Prɔblɛm dɛn we gɛt fɔ du wit di ɔmon dɛn: I kin mek pɔsin gɛt haypo tayroyd, i kin bigin fɔ bɔn pikin kwik kwik wan, ɛn i kin gɛt dayabitis we i big.
- Infɛkshɔn na yu yes: If yu gɛt infɛkshɔn na yu yes ɔltɛm, dat kin mek yu nɔ yɛri fayn.
- Ɔda tin: Dɛn kin si bak se i gɛt skɔliosis, i nɔ kin izi fɔ it we i smɔl, ɛn i nɔ kin si fayn (we i kin si fa).
Aw dɔktɔ kin no bɔt dis?
Yu dɔktɔ kin tink bɔt dis sik if i tink se yu pikin gɛt dilɛys fɔ divɛlɔp ɔ i de wɔri bɔt aw dɛn luk. Di men we fɔ kɔnfirm di diagnosis na wit wan jenɛtik tɛst . Dis tan lɛk we pɔsin de du blɔd tɛst ɔltɛm. I kin chɛk fɔ si if wan kromozom 7 nɔ de.
Apat frɔm dat, dɛn kin du sɔm ɔda tɛst dɛn fɔ no if yu gɛt ɔda sayn dɛn:
- At ɛgzamin: Dɛn kin du ECG ɔ at skan (Echocardiogram) fɔ chɛk if prɔblɛm de wit di at ɛn di blɔd vesel dɛn.
- Fɔ mɛzhɔ di blɔd prɛshɔn: I impɔtant fɔ chɛk yu pikin in blɔd prɛshɔn ɔltɛm.
- Blɔd ɛn urine tɛst: Dɛn kin du dɛn tɛst ya fɔ chɛk di kalsiɔm lɛvɛl ɛn di kidni wok.
Aw dɛn kin trit am ɛn manej am?
Wiliamz sindrom nɔr kin wɛl ɔl bikɔs na wan sik wae de kam pan pɔrsin in jɛnɛtiks. Bɔt dɛn kin ebul fɔ kɔntrol di sik ɛn prɔblɛm dɛn we gɛt fɔ du wit am fayn fayn wan ɛn di pikin kin liv nɔmal, gladi layf.
Di tritmɛnt plan kin difrɛn frɔm pikin to ɔda pikin ɛn difrɛn spɛshal pipul dɛn kin ɛp am.
1. Dɔktɔ we de mɛn di pikin in at: I impɔtant fɔ de chɛk di pikin in at ɔltɛm. If prɔblɛm de, dɛn go gi yu di tritmɛnt we yu nid (mɛdikeshɔn ɔ ɔpreshɔn).
2. Fɔ ɛp pikin kwik kwik wan: Difrɛn tritmɛnt dɛn de fɔ ɛp pikin fɔ divɛlɔp ɛn lan. Spich Therapy, Occupational Therapy, ɛn Fisiotherapy na di men wan dɛn.
3. Spɛshal Ɛdyukeshɔn: Spɛshal ɛdyukeshɔn we dɛn kin yuz kin nid fɔ win di prɔblɛm dɛn we kin apin na skul fɔ lan.
4. Ɔda spɛshal pipul dɛn: I impɔtant fɔ go to dɔktɔ dɛn we spɛshal pan dɛn tin ya fɔ kɔntrol di kalsiɔm lɛvɛl, fɔ trit ɔmon prɔblɛm dɛn, ɛn chɛk if yu tit ɛn yay dɛn gɛt wɛlbɔdi.
Ustɛm fɔ si dɔktɔ ɛn ustɛm fɔ go na di ETU
I rili impɔtant fɔ pe atɛnshɔn to yu pikin in wɛlbɔdi. Nɔ delay fɔ go to dɔktɔ pan dɛn tin ya.
| Chans | Wetin fɔ du |
|---|---|
| Si yu dɔktɔ... | |
| If divεlכpmεnt maylston dεm de delay (e.g., let waka כ tכk). | Tɔk to yu dɔktɔ bɔt aw yu pikin de gro. |
| If yu gɛt infɛkshɔn na yu yes ɔltɛm ɔ yu de gɛt prɔblɛm wit yu yes. | I fayn fɔ go to dɔktɔ we sabi bɔt yu yes, nos, ɛn trot. |
| If i nɔ izi fɔ yu fɔ it. | Go to dɔktɔ bɔt aw fɔ it ɛn aw i nɔ kin izi fɔ swɛla. |
| Go na di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm... | |
| If yu sho sayn dɛm fɔ hat sik. |
|
As mama ɔ papa, di lɔv, sɔpɔt, ɛn peshɛnt we yu gɛt na di trɛnk we yu pikin go gi. Di we aw dɛn pikin dɛn ya lɛk dɛn ɛn dɛn kin lɛk fɔ spɛn tɛm wit ɔda pipul dɛn, dat kin mek ɔlman lɛk dɛn.
Mɛsej we dɛn kin kɛr go na os
- Wiliamz sindrom na wan kayn jεnεtik kכndyushכn we nכ kin apin we dεn lכs pat pan di kromozom 7. Dis nכto sכmtin we di mama εn papa fכlt.
- Dɛn pikin ya kin rili de wit ɔda pipul dɛn, lɛk dɛnsɛf, ɛn dɛn kin sabi tɔk fayn fayn wan.
- Di tin we impɔtant pas ɔl na prɔblɛm dɛn we gɛt fɔ du wit at, so fɔ de wach am ɔltɛm we dɔktɔ we de mɛn di at kin rili impɔtant.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn dis sik, dɛn kin ebul fɔ kɔntrol di sik dɛn ɛn di pikin kin gɛt rili gud layf wit di tritmɛnt ɛn sɔpɔt we i nid.
- If yu gɛt ɛnitin fɔ wɔri bɔt yu pikin, tɔk to yu dɔktɔ opin wan bɔt am.
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