As mama ɔ papa, wi big drim na fɔ gɛt wɛlbɔdi pikin. Bɔt sɔmtɛm wi pikin dɛn kin kam na dis wɔl wit sɔm wɛlbɔdi prɔblɛm dɛn we nɔ kin apin so ɔltɛm. Yu smɔl pikin luk yɔŋ pas in ej fa fawe? Yu tink se in fes gɛt difrɛn, spɛshal luk pas ɔda pikin dɛn? Ɛn yu tink se i rili lɛk fɔ spɛn tɛm wit ɔda pipul dɛn, i kin smayl ɛn tɔk to ɔlman we i si? dis kin bi sayn dεm sכmtεm fכ wan jεnεtik kכndyushכn we nכ kin apin we dεn kכl "Williams Syndrome". Nɔ wɔri, wi go tɔk bɔt dis klia wan ɛn simpul wan.
Fɔ tɔk am simpul wan, wetin na di sik we dɛn kɔl Williams Syndrome?
Wiliamz sindrom, wae sɔm pipul dɛn kin kɔl Williams-Buren syndrome, na wan sik wae nɔr kin bɔrku pan jɛnɛtiks. Fɔ tɔk am simpul wan, di kromozom dɛn we de insay di sɛl dɛn na wi bɔdi, de sho ɔltin frɔm di ayt we wi gɛt te to di kɔlɔ we wi gɛt ɛn aw wi de luk. Dɛn tan lɛk di instrɔkshɔn buk we de bil wi bɔdi. Pikin we gɛt di sik we dɛn kɔl Williams syndrome gɛt smɔl pat pan di kromozom 7 we nɔ de. I tan lɛk se sɔm pej dɛn nɔ de na di instrɔkshɔn manyual. Dis pat pan di jin we nɔ de de mek di sayn dɛn we gɛt fɔ du wit di sik.
Dis sik kin afɛkt di pikin in grow, aw i kin lan, aw in at kin wok, ɛn aw i kin luk. I kin mek bak sɔm ɔmon prɔblɛm dɛn lɛk we yu gɛt bɔku kalsiɔm na yu blɔd, di tayroyd we nɔ de wok fayn, ɛn we yu bigin fɔ bɔn pikin.
Aw dis sik kin apin? Udat de gɛt dis ?
Bɔku tɛm, dis nɔto sɔntin we di mama ɔ papa gɛt. na wan spontan muteshon we de apin di tεm we di pikin de bכn, we de mek wan pat pan di 7th kromozom lכs. So, dɛn nɔ go blem di mama ɔ di papa fɔ dis. Dis nɔto sɔntin we ɛnibɔdi go ebul fɔ stɔp.
Bɔt if pɔsin we gɛt di sik we dɛn kɔl Williams syndrome gɛt pikin, 50% chans de fɔ mek di pikin gɛt di sik.
Dis na tin we nɔ kin apin so ɔltɛm. Statistikin na kɔntri dɛn lɛk Amɛrika, na wan pan ɛvri 10,000 pikin dɛn we dɛn bɔn gɛt dis sik. Pikin dɛn de we gɛt dis sik na Sri Lanka bak, bɔt i nɔ kin bɔku.
Aw dis sik kin afɛkt mi pikin?
Fɔ mɛn pikin we gɛt Wiliamz Sindrom kin tranga, bɔt if dɛn no am kwik kwik wan ɛn di tritmɛnt ɛn sɔpɔt we dɛn nid, dɛnsɛf kin ebul fɔ du ɔl wetin dɛn ebul.
Jɔs tink bɔt, bikɔs dɛn pikin ya gɛt lɔs jɔyn, dɛn kin bigin fɔ sidɔm ɛn waka smɔl leta pas ɔda pikin dɛn. Dɛn kin gɛt sɔm prɔblɛm dɛn bak we dɛn bɔn na dɛn at ɔ blɔd vesel dɛn we gɛt fɔ du wit di at. Sɔntɛnde, dis kin nid fɔ du ɔpreshɔn. So, i nid fɔ de du dɔktɔ ɛgzam ɔltɛm.
Wan pan di tin dɛn we rili wɔndaful bɔt dɛn pikin ya na dat dɛn rili sabi fɔ tɔk ɛn tɔk to dɛnsɛf. Dɛn kin tɔk fayn ɛn dɛn kin rili lɛk fɔ spɛn tɛm wit ɔda pipul dɛn. Bɔt bikɔs ɔf dis talɛnt, sɔntɛnde wi kin mis di wikɛd tin dɛn we dɛn kin lan, fɔ ɛgzampul, i nɔ kin izi fɔ lan nɔmba ɛn lɛta dɛn. Dɛn kin gɛt smɔl prɔblɛm fɔ ɔndastand di difrɛns bitwin wan tin ɛn ɔda tin (spatial reasoning).
Dɔn bak, mɛmba se dɛn pikin ya kin mɛmba gud fɔ lɔng tɛm. Bɔt dɛn kin gɛt tin dɛn lɛk ADHD (Attention-Deficit/Hyperactivity Disorder), usay i nɔ kin izi fɔ dɛn fɔ pe atɛnshɔn.
Wetin na di kɔmɔn sayn dɛm?
Nɔto ɔl pikin dɛn we gɛt di sik we dɛn kɔl Williams syndrome na di sem. Sɔm kin gɛt mɔ sayn, sɔm kin gɛt smɔl. Lɛ wi brok dɛn sayn ya dɔŋ.
| Karakteristik kategori | Tin dɛn fɔ si |
|---|---|
| Di we aw yu bɔdi tan |
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| Fɔ gro ɛn fɔ biev | |
| Ɔda wɛlbɔdi prɔblɛm dɛn |
Tin dɛn we yu fɔ tek tɛm mɔ bɔt: At sik
De big prɔblɛm wae dɛn kin si pan dis sik na hat sik. spεshal wan, dεn kin si di men bכdi we kכnekt to di at εn di bכdi we de kכri bכdi to di lכng dεm we de sכmtεm sכmtεm (stenosis). Dis kin mek yu gɛt ay blɔd prɛshɔn, yu at nɔ kin bit ɔltɛm (arrhythmia), ɛn sɔntɛnde i kin ivin mek yu at nɔ de wok fayn. Bɔku tɛm, di fɔs tin we dɛn kin tink se pikin gɛt Wiliamz sindrom na bikɔs ɔf dis at prɔblɛm.
Aw dɔktɔ dɛn kin no bɔt dis sik?
Dɛn kin no dis sik we dɛn smɔl ɔ we dɛn smɔl. If yu dɔktɔ de dawt aw yu pikin de luk ɛn di sayn dɛn we i gɛt, i go tek tɛm luk di pikin fɔs.
Dɔn, dɛn kin du spɛshal tɛst fɔ no if pɔsin gɛt dis sik. Dis tan lɛk we pɔsin de du blɔd tɛst ɔltɛm. Dis kin chɛk ɛksaktɔli if da pat de pan kromozom 7 we a bin dɔn tɔk bɔt nɔ de.
Apat frɔm dat, dɛn kin du sɔm ɔda tɛst dɛn fɔ no if di pikin gɛt ɔda sik dɛn:
- Fɔ chɛk di at: ECG ɔ Echocardiogram (wan ɔltra saund skan fɔ di at) .
- We yu de mɛzhɔ yu blɔd prɛshɔn: Chɛk fɔ si if yu blɔd prɛshɔn nɔ bɔku.
- Blɔd ɛn urine tɛst: Chɛk di kidni fɔ wok ɛn di blɔd kalsiɔm lɛvɛl.
Aw dɛn kin trit am? Yu tink se dɛn go ebul fɔ mɛn dis?
Wiliamz Sindrom nɔto sik we pɔsin kin mɛn ɔltogɛda. Na bikɔs na wan chenj we de apin na di jɛnɛtiks kin mek i apin. Bɔt dɛn kin ebul fɔ kɔntrol di sayn dɛm ɛn di prɔblɛm dɛm we i kin kam wit fayn fayn wan. Dat min se wi kin du ɔl wetin wi ebul fɔ ɛp di pikin fɔ liv nɔmal layf ɛn gladi at.
Di tritmɛnt plan go difrɛn frɔm wan pikin to ɔda pikin, i go dipen pan di pikin in sayn dɛm.
- Fɔ go to dɔktɔ we de mɛn yu at: If at prɔblɛm de, na in go disayd us tritmɛnt (i kin bi se na mɛrɛsin ɔ ɔpreshɔn).
- Program dɛn we dɛn kin du fɔ ɛp pipul dɛn kwik kwik wan:I rili impɔtant fɔ rifer di pikin to tin dɛn lɛk tɔk tɛrapi ɛn fisiotɛrapi fɔ mek i nɔ divɛlɔp di tɛm we i de gro.
- Spɛshal Ɛdyukeshɔn: If pipul dɛn de we nɔ ebul fɔ lan, pikin nid fɔ gɛt ɛdyukeshɔn sistɛm we dɛn mek fɔ wetin i nid.
- Ɔda spɛshal pipul dɛn: If di kalsiɔm we de na yu blɔd bɔku, yu go nid fɔ go to dɔktɔ we de mɛn yu blɔd ɔ we sabi bɔt it. Yu kin nid bak fɔ go to spɛshal dɔktɔ dɛn fɔ ɛp yu fɔ gɛt prɔblɛm wit yu tit, yu yay, ɛn yes.
Wetin a nid fɔ no as mama ɔ papa?
Na nɔmal tin fɔ fil sɔri ɛn fred we yu gɛt diagnosis lɛk dis. Bɔt di tin we impɔtant pas ɔl na fɔ gi yu pikin di bɛst lɔv, kia, ɛn sɔpɔt.
- Si yu dɔktɔ di rayt tɛm: I impɔtant fɔ de wach yu pikin in wɛlbɔdi ɔltɛm, mɔ fɔ prɔblɛm dɛn we gɛt fɔ du wit at.
- Peshɛnt: Yu pikin kin lan ɔltin di we aw i want. Wok wit am wit peshɛnt ɛn wit lɔv. Apres ivin di smɔl smɔl tin dɛn we i dɔn du.
- Nɔto yu wan de: Tɔk to ɔda mama ɛn papa dɛn we gɛt pikin dɛn lɛk dis. Di tin dɛn we go apin to dɛn go mek yu gɛt bɔku trɛnk. Dɔn bak, tɔk opin wan wit yu dɔktɔ bɔt yu kwɛstyɔn ɛn tin dɛn we de mɔna yu.
Bɔrku pipul dɛm wae gɛt Williams syndrome kin gɛt nɔrmal layf. Bɔt sɔmtɛm, siriɔs at prɔblɛm kin mek dɛn layf shɔt. Dɛn kin nid sɔm kayn sɔpɔt as dɛn de ol.
Ustɛm yu fɔ go to dɔktɔ?
If yu pikin gɛt dɛn sik ya, i rili impɔtant fɔ go to dɔktɔ we de mɛn pikin dɛn fɔ advays.
| Chans | Tɔk bɔt |
|---|---|
| Divɛlɔpmɛnt dilɛys | If di pikin de delay fɔ ol dɛn ed ɔp, rɔl, sidɔm, waka, ɔ tɔk di rayt ej. |
| Infekshɔn dɛn we kin kam bɔku tɛm | Ɛspɛshali if di pikin in yes infɛkshɔn kin apin bɔku tɛm ɔ if i tan lɛk se i nɔ kin izi fɔ yɛri di pikin. |
| Prɔblɛm fɔ it | If yu pikin gɛt prɔblɛm fɔ drink milk ɔ it. |
Ustɛm yu fɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU)?
If di pikin sho ɛni wan pan dɛn sayn ya we de sho se i gɛt at sik, kɛr am go na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia am wantɛm wantɛm.
- Blu/pepul di kɔlɔ we de chenj na di skin ɔ di lip .
- Fɔ blo kwik kwik wan ɔ fɔ mek i nɔ izi fɔ blo.
- Fɔ gɛt prɔblɛm we pasmak fɔ it.
- At rit kin rili fast.
- Di bɔdi we de swel, mɔ di fes ɛn di an ɛn fut dɛn .
Dis kכndyushכn nכ de pas, bכt di lכv, soshכnal nature fכ dεn pikin ya na tru tru "contagious." Dɛn kin mek ɔlman we de arawnd dɛn gladi. Fɔ dil wit nyu diagnosis kin tranga, so gi yu pikin yu sɔpɔt ɔltɛm.
Mɛsej we dɛn kin kɛr go na os
- Nɔto di mama ɛn papa fɔlt kin mek pɔsin gɛt di sik we dɛn kɔl Williams syndrome. Na chenj we de apin na di jɛnɛtiks we kin apin bay chans we i gɛt bɛlɛ.
- Dɛn pikin ya gɛt difrɛn we aw dɛn de luk dɛn, dɛn lɛk dɛn ɛn dɛn rili lɛk dɛn, ɛn dɛn kin lɛk fɔ spɛn tɛm wit dɛn kɔmpin dɛn.
- Di tin we de mɔna pipul dɛn pas ɔl na di wɛlbɔdi biznɛs na di tin dɛn we gɛt fɔ du wit di at ɛn di blɔd vesel dɛn. So, fɔ chɛk yu dɔktɔ ɔltɛm rili impɔtant.
- Ivin wit disabiliti fɔ lan, dɛn kin gɛt rili gud fɔ tɔk ɛn mɛmba fɔ lɔng tɛm.
- If yu no di pikin kwik kwik wan ɛn rifer am to di tritmɛnt ɛn tritmɛnt program dɛn we i nid, dat kin ɛp di pikin fɔ liv rili gud layf.
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