Yu smɔl pikin gɛt big pepul spat na in fes? Yu tink se na Sturge-Weber Syndrome?

Yu kin wɔri smɔl if yu si wan big, flat, pink to dak pepul spat na wan say na yu nyu bɔbɔ in fes, sɔntɛm na in fɔɛd ɔ ɔp in yaylid. Bɔku tɛm, dɛn tin ya na nɔmal bɔn mak dɛn. Bɔt, nɔto ɔltɛm, wan spat lɛk dis kin bi sayn fɔ wan jenɛtik kɔndishɔn we dɛn kɔl Sturge-Weber Syndrome . Lɛ wi tɔk mɔ bɔt dis tide, nɔto so? Nɔ panik, di impɔtant tin na fɔ no bɔt dis.

Wetin na di sik we dɛn kɔl Sturge-Weber Syndrome?

Fɔ tɔk am simpul wan, Sturge-Weber Syndrome na wan jenɛtik sik we kin afɛkt di we aw di blɔd vesel dɛn na yu pikin in bren, in skin, ɛn in yay de divɛlɔp. Bɔku tɛm, dɛn kin si am we dɛn bɔn am.

Di fɔs ɛn klia sayn fɔ dis kɔndishɔn na di bɔn mak we wi bin dɔn tɔk bɔt , di pɔt wayn stɛyn . dis na flat, pink to dak pepul (כ dak pas di pikin in nכmal skin kכla) spat na di skin. I gɛt in nem bikɔs i tan lɛk di kɔlɔ we smɔl wayn go lɛf na di skin. dis spat dεn kin si am bכku tεm na wan say na di pikin in fes, spεshal wan na di fכs εn oba di aylid.

Bɔt, mak dɛn we dɛn kin bɔn pikin kin rili bɔku. So, nɔto ɔl pikin we gɛt pɔt wayn stɛyn gɛt Sturge-Weber Syndrome. Sɔm pikin dɛn kin gɛt dis spat nɔmɔ, ɛn dɛn nɔ kin gɛt ɛni ɔda ɔda sayn.

Bɔt if dɛn bɔn yu pikin wit dis kayn bɔn mak, dɔktɔ dɛn go chɛk di pikin in bren blɔd vesel dɛn jɔs afta dɛn bɔn am fɔ si if ɛni ɔda chenj de. Dis na bikɔs prɔblɛm dɛn we de wit di blɔd vesel dɛn na di bren kin afɛkt di blɔd we de go na di bren, ɛn mek tin dɛn lɛk fɔ sik . Dis sik (Sturge-Weber Syndrome) nɔr kin mek pɔrsin in layf de pan denja. Bɔt if dɛn nɔ trit di pikin, i kin afɛkt di we aw di pikin de liv in layf. Na dat mek i impɔtant fɔ no bɔt dis ɛn tek di step dɛn we yu nid.

Wetin na di sayn dɛm fɔ Sturge-Weber Syndrome?

Tri men sayn dɛm de fɔ Sturge-Weber Syndrome. Lɛ wi si wetin dɛn bi:

• (Port wine stain) Bɔnmak: Dis na di men ɛn fɔs sayn we pɔsin kin si. Dis na wan kɔlekɛshɔn fɔ blɔd vesel dɛm we dɔn gɛda na di pikin in skin. Dɛn kin si am mɔ na di fɔrɛst ɛn ɔp di aylid. As tɛm de go, di skin usay dis spat de kin tik ɛn in kɔlɔ kin dak.

• Glaucoma: Dis na wan sik we wata kin kam insay di yay, we kin mek prɛshɔn kin bɔku. I tan lɛk se balyɔn ful-ɔp wit wata ɛn mek i tayt. Dis kin pwɛl yu yay, so yu nid fɔ no bɔt dis bak. Bɔku bɔku pikin dɛn we gɛt Sturge-Weber Syndrome kin gɛt dis sik.

• Leptomeningeal angioma dɛn we de na di bɔdi:Dis na smɔl kɔmplikɛt nem, nɔto so? Fɔ tɔk am simpul wan, i de tɔk bɔt abnɔmal blɔd vesel dɛn (we dɛn kɔl angiomas) we de fɔm insay di mɛmbran dɛn we de kɔba di bren ɛn di spɛnal kɔd (we dɛn kɔl lɛptomeninges). Dɛn blɔd vesel dɛn ya we nɔ fayn kin mek di blɔd nɔ go na sɔm pat dɛn na di bren. di pat dεm na di bren we dεn afekt kin mek yu sik εn wik na wan say na di bכdi (hεmiparesis) .

If yu pikin gɛt sik we de mek i sik, i kin bigin insay in fɔs ia, bɔku tɛm bifo in batde sɛkɔn. Bɔrku tɛm, di sayn dɛm wae de sho se pɔrsin gɛt sik kin jɔs afɛkt wan say na di bɔdi. Di pɔt wayn stayn kin dak as di sik de go bifo. Dis na nɔmal tin, so nɔ wɔri.

Apat frɔm dɛn men sayn ya, sɔm ɔda sayn dɛn de we yu go notis. I impɔtant fɔ mɛmba se nɔto ɔlman go gɛt ɔl dɛn tin ya.

• Divεlכpmεnt delay: Dis min se di pikin de let fכ divεlכp di skil dεm we fit in ej lεk fכ tכk, waka, εn ple wit כda pikin dεm.
• Hypothyroidism: Dis kin slow bɔrku bɔdi prɔses, kin mek yu taya ɛn gɛt kɔnstipɛshɔn.
• Intɛlektual disabiliti: Tin dɛm lɛk di prɔblɛm fɔ lan ɛn fɔ ridyus di ebul fɔ ɔndastand.
• Ed we de at ɔ maygren: Ed kin at ɔltɛm.

Bɔt mɛmba se nɔto ɔl dɛn sayn ya kin apin to ɔl pikin. Dɛn kin difrɛn frɔm wan pikin to ɔda pikin. Sɔm pikin dɛn kin jɔs gɛt di rash, ɛn ɔda wan dɛn kin gɛt di rash wit di fit.

Wetin kin mek pɔsin gɛt Sturge-Weber Syndrome?

dis na bikoz fכ wan jεnεtik vεryכnt insay wan jin we dεn kכl (CNAQ). dis jin de kכntro di fכmeshכn εn wok we di blכd vεsul dεm na wi bכdi de du. Jɔs lɛk aw dɛn nɔ kin ebul fɔ pripia risɛp kɔrɛkt wan if mistek de, na so bak chenj na dis jin kin bi. Dis kin mek di blɔd vesel dɛn nɔ de fɔm fayn we di pikin stil de na di bɛlɛ.

Dis na sɔntin we kɔmɔt frɔm jɛnɛreshɔn?

Dis na kwɛstyɔn we bɔku mama ɛn papa dɛn gɛt. Nɔ, Sturge-Weber Syndrome nɔto sɔntin we pɔsin kin gɛt frɔm dɛn mama ɛn papa. Na sɔntin we kin apin randomly, dat na, we nɔ gɛt wan patikyula kɔz (sporadically). Dis min se dɛn kin bɔn ɛnibɔdi wit dis sik. Nɔ tink se i apin bikɔs ɔf sɔntin we yu du ɔ tɔk.

dis jεnεtik chenj de apin na di somatik sεl dεm – dat min se i nכ de afekt di sεks sεl dεm (εg sεl dεm εn sεl dεm) fכ di mama εn papa. dis chenj de apin rili ali we di εmbrayo de divεlכp. sכm sεl dεm kin gεt dis jεnεtik chenj, we כda wan dεm nכ kin gεt (dεn kכl dis mosaykism). Dis na di rizin we mek sɔm blɔd vesel dɛn kin fɔm fayn fayn wan, ɛn ɔda wan dɛn nɔ kin fɔm.

Wetin na de prɔblɛm wae kin kam wit Sturge-Weber Syndrome?

Bikɔs ɔf di lɛptomeningeal angiomas we wi bin tɔk bɔt, we na abnɔmal blɔd vesel dɛn na di bren, i kin bi se sɔm prɔblɛm dɛn kin bɔku. Dɛn tin ya na:

• Calcification: Dis na di we aw di kalsiɔm kin gɛda na di blɔd vesel dɛn . Yu kin si dis pan ɛkstrem rayt na di bren.
• di bren tisu dεm we de lכs/west (Atrophy): As tεm de go, sכm pat dεm na di bren kin shrink.
• Paralayz: I nɔ de gɛt pawa na wan say na di bɔdi.
• Strɔk: Na siriɔs tin we kin apin we di blɔd vesel we de gi blɔd to di bren kin blok ɔ brok.

Dɛn kɔmplikeshɔn ya nɔ kin apin to ɔlman, bɔt i impɔtant fɔ no bɔt dɛn.

Aw yu go no if yu gɛt Sturge-Weber Syndrome?

Dɔktɔ go no if yu pikin gɛt Sturge-Weber Syndrome afta dɛn bɔn am. Yu kin si bak di pɔt-wayn stayn na yu pikin in skin. Di dɔktɔ go luk fɔ am we yu de du yu pikin in fɔs bɔdi ɛgzam. Dɔn, dɛn go du nyurolɔjik ɛgzam ɛn ɔda tɛst dɛn fɔ si if di blɔd vesel dɛn nɔ de wok we de afɛkt di yay ɛn di bren. Dɛn tɛst ya kin bi:

• MRI (Magnetic Resonance Imaging) scan: Dis kin tek ditayli pikchɔ dɛn bɔt di bren ɛn di blɔd vesel dɛn. dis rili impɔtant fɔ no if ɛni wan de (lɛptomeningeal angiomas).
• CT (Computed Tomography) scan: Dis kin tek pikchɔ bak fɔ di bren, mɔ fɔ si if kalsifikeshɔn de.
• EEG (Electroencephalogram) test: Dis de mכsu di ilektrikal aktiviti na di bren. If pɔsin de sik, i kin ɛp fɔ no wetin de mek i sik ɛn usay na di bren i de bigin.
• Ay ɛgzam: Dis impɔtant fɔ chɛk fɔ glaukoma ɛn ay prɛshɔn.

Na di infɔmeshɔn we dɛn kin gɛt frɔm dɛn tɛst ya kin mek dɔktɔ dɛn no di kɔrɛkt tin bɔt di sik.

Wetin na di tritmɛnt fɔ Sturge-Weber Syndrome?

Di tritmɛnt fɔ dis sik na fɔ kɔntrol di sayn dɛm. Dis min se no mɛrɛsin nɔ de yet, bɔt bɔku tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sik ɛn ɛp di pikin fɔ liv bɛtɛ layf. Dɛn tin ya kin bi:

• Dɛn kin yuz mɛrɛsin fɔ mek pɔsin nɔ gɛt sik ɔ sɔm tɛm dɛn kin du ɔpreshɔn fɔ kɔntrol di sik we pɔsin kin gɛt. Bɔku pikin dɛn kin kɔntrol di sik we dɛn kin gɛt wit mɛrɛsin.
• Aydrop we gɛt mɛrɛsin ɔ ɔpreshɔn fɔ glaukoma kin ɛp fɔ ridyus di prɛshɔn na di yay.
• Laser skin resurfacing kin ridyus di apinɛns fɔ wan pɔt wayn stɛyn. Pan ɔl we dis nɔ go pul di dɔti kɔmɔt kpatakpata, i kin mek in kɔlɔ nɔ bɔku ɛn chenj di we aw i tan to sɔm mak.
• Fizik tɛrapi fɔ di mɔsul dɛn we wik. If wikɛd tin de na wan say na di bɔdi, dis kin ɛp fɔ mek dɛn mɔsul dɛn de strɔng ɛn mek i izi fɔ muv.
• Speshal edyukeshɔn kɔs dɛn de fɔ pikin dɛn we nɔ de gro fayn ɔ we gɛt prɔblɛm wit dɛn maynd. Dɛn tin ya rili impɔtant fɔ mek dɛn ebul fɔ du mɔ.

Dɔktɔ dɛn kin se big pipul dɛn we gɛt Sturge-Weber Syndrome fɔ tek wan smɔl aspirin ɛvride fɔ ridyus di risk fɔ gɛt strok ɛn ɔda tin dɛn we gɛt fɔ du wit am. Bɔt nɔ gi smɔl pikin dɛn aspirin if dɔktɔ nɔ tɛl yu fɔ du dat. I kin denja.

Di tritmɛnt we dɛn kin gi kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Yu pikin in dɔktɔ go tɛl yu us tritmɛnt dɛn kin tɛl yu ɛn wetin dɛn tritmɛnt dɛn de du, so dat yu go disayd fɔ du gud tin bɔt yu pikin in wɛlbɔdi.

Aw di tumara bambay go tan lɛk fɔ pikin we gɛt Sturge-Weber Syndrome?

Yu pikin in dɔktɔ go ebul fɔ tɛl yu bɔt dɛn sik. If yu gɛt Sturge-Weber Syndrome, di kayn we aw yu bren dɔn pwɛl kin ɛp yu dɔktɔ fɔ no wetin yu pikin go du. Fɔ ɛgzampul, if yu pikin bigin fɔ gɛt fit bifo i ol 2 ia, i kin gɛt prɔblɛm wit in divɛlɔpmɛnt ɔ i kin gɛt prɔblɛm wit in maynd. Bɔt dis nɔ kin apin to ɔl pikin dɛn.

Yu pikin go nid fɔ de nia dɛn mɛdikal tim ɔl in layf fɔ kɔntrol di sik dɛn. Dɛn kin go to nyurolɔg if i fayn, ɛn ɔftalmolɔg fɔ chɛk di vishɔn ɛvri ia.

Yu tink se i kin afɛkt di layf we pɔsin de liv?

Dis na tin we de mɔna bɔku mama ɛn papa dɛn. Bɔrku tɛm, Sturge-Weber Syndrome nɔr kin afɛkt di pikin in layf. Bɔt di sayn dɛm kin afɛkt di pikin in kwaliti layf, so dɛn go nid fɔ gɛt tritmɛnt ɛn kia frɔm dɔktɔ ɔlsay na in layf. Bikɔs aw dis sik kin tranga kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin, yu pikin in dɔktɔ go ɛksplen wetin fɔ ɛkspɛkt ɛn wetin fɔ wach fɔ.

Yu tink se dɛn kin ebul fɔ protɛkt di Sturge-Weber Syndrome?

As wi bin dɔn tɔk, di jin muteshon we de mek Sturge-Weber Syndrome kin apin randomly, witout enitin we de sho se i kin mek i gɛt dis sik. So, naw, no we nɔ de we dɛn dɔn pruv fɔ mek dɛn nɔ gɛt am. Dis nɔto sɔntin we kin apin tru ɛnibɔdi in fɔlt.

I pɔsibul fɔ liv nɔmal layf wit Sturge-Weber Syndrome?

Yɛs, i pɔsibul fɔ liv nɔmal layf wit wan sik lɛk Sturge-Weber Syndrome. Bɔrku pipul dɛn kin liv fayn ɛn gladi layf wit dis sik.

Bɔn mak dɛn kin rili kɔmɔn. Bɔt, bɔn mak dɛn we pɔsin kin si ɛn we kin ɔlsay na di fes nɔ kin bɔku so. Yu kin tink bɔt tritmɛnt wit lɛsa fɔ ridyus dɛn bɔn mak ya fɔ mek yu fil fayn. Dat na yu disishun ɔltogɛda.

Natin nɔ bad fɔ di we aw dɛn bɔn yu. Ɔlman gɛt in yon we aw i luk. Bɔku pipul dɛn kin gɛt kɔsmɛtik ɔpreshɔn fɔ mek dɛn chenj di we aw dɛn de luk. Wi kin ɔndastand dat. If yu disayd fɔ du kɔsmɛtik ɔpreshɔn ɔ yu nɔ disayd fɔ du am, na yusɛf sɛf disayd. Wetin ɔda pipul dɛn tink bɔt yu nɔ fɔ afɛkt da disayd de.

Aw a go ɛp mi pikin we gɛt Sturge-Weber Syndrome?

Di impɔtant tin we yu kin du as mama ɔ papa na fɔ lɛk yu pikin, sɔpɔt am, ɛn gi am di mɛrɛsin we i nid. De tin wae impɔtant pas ɔl fɔ du fɔ bia wit dis sik fayn fayn wan na fɔ bil pɔrsin fɔ tink bɔt yusɛf fayn fayn wan.

Yu kin ɛp yu pikin fɔ fil fayn bɔt aw i luk bay we yu tɔk bɔt dɛn ayt, di shep we dɛn nos gɛt, ɛn ivin da pɔt wayn stɛyn de as nɔmal pat pan in apia. Tɔk to yu pikin bɔt tin dɛm lɛk, "Tin dɛn de bɔt wi bɔdi we wi nɔ ebul fɔ kɔntrol. Bɔt wi kin lan fɔ lɛk wetin wi gɛt bay we wi tink bɔt dɛn as 'wi'."

If yu ɔ yu pikin nid saykolojik sɔpɔt, tɔk to yu dɔktɔ. I kin se yu fɔ go to pɔsin we de gi advays bɔt yu maynd ɔ jɔyn sɔpɔt grup wit ɔda famili dɛn we gɛt Sturge-Weber Syndrome. Bɔku tin dɛn de we wi kin lan frɔm di tin dɛn we kin apin to ɔda pipul dɛn.

Ustɛm a fɔ kɛr mi pikin go to dɔktɔ?

If yu pikin nɔ de mit di divɛlɔpmɛnt maylston dɛn we fit in ej, lɛk fɔ tɔk in fɔs wɔd ɔ fɔ waka, tɛl yu dɔktɔ.

Sɔm pan de sayn dɛm wae de sho se yu gɛt Sturge-Weber Syndrome, lɛk wae yu mɔsul dɛn wik na wan say na yu bɔdi, kin tan lɛk wae yu gɛt strok. If yu notis ɛni nyu ɔ nɔmal sayn we difrɛn frɔm di we aw yu pikin kin biev, nɔ shem fɔ kɔl yu dɔktɔ ɔ kɔl di imejensi savis dɛm.

If yu pikin gɛt sik fɔ di fɔs tɛm, kɛr dɛn go na ɔspitul wantɛm wantɛm. Dis rili impɔtant.

Us kwɛstyɔn dɛn a fɔ aks mi pikin in dɔktɔ?

We yu go to yu pikin in dɔktɔ, aks ɔl di kwɛstyɔn dɛn we yu gɛt. Nɔ ol ɛnitin bak. Fɔ ɛgzampul, i fayn fɔ aks kwɛstyɔn dɛn lɛk:

• "Us simptom a fɔ luk fɔ?"
• "Us kayn tritmɛnt yu de rɛkɔmɛnd?"
• "Ɛni sayd ɛfɛkt de fɔ di tritmɛnt? Wetin na dɛn?"
• "Wetin a go du if mi pikin gɛt fit?"
• "Us kain tins wi shud pripia fo di fyuja?"

Sturge-Weber Syndrome na wan diagnosis wae kin tranga smɔl if yu no insay di fɔs fɔs tɛm wit yu nyu bɔbɔ. Yu kin wɔri bɔt wetin go apin to dɛn tumara bambay ɛn aw dɛn go bia wit di sik dɛn we dɛn nɔ bin de tink se go apin wantɛm wantɛm. Na nɔmal tin fɔ gɛt kwɛstyɔn ɛn fil lɛk se yu dɔn lɔs smɔl dis tɛm. Bɔt no se nɔto yu wangren de. Yu pikin in mɛdikal tim rɛdi fɔ ɛp yu fɔ ɔndastand wetin de apin ɛn ansa ɛni kwɛstyɔn we yu gɛt. Dɛn go sɔpɔt yu ɛn yu pikin as dɛn de gro. If yu notis ɛni nyu sayn ɔr gɛt kwɛstyɔn bɔt aw fɔ trit yu pikin, nɔ ɛva shem fɔ tɔk to dɛn dɔktɔ.

Di impɔtant tin dɛn we wi want fɔ kɛr go na os frɔm dis atikul

Okay, so wi dɔn tɔk bɔku bɔt Sturge-Weber Syndrome tide, nɔto so? Na sɔm pan di impɔtant tin dɛn we yu fɔ mɛmba:

• Pɔt wayn stɛyn: di men sayn fɔ dis na wan pink to dak pepul spat na di pikin in fes, mɔ na di fɔrɛst ɛn ɔp di aylid dɛn. Bɔt nɔto ɔlman we gɛt dis spat gɛt Sturge-Weber Syndrome.
• Dis na jεnεtik kכndyushכn: bכt i nכto sכmtin we dεn kin gεt frכm dεm, na sכmtin we de apin bay chans.
• di sayn dεm: Apat frכm di makula, כda simptom dεm na di ay prεshכn we de go כp (glaucoma), we yu de sכk biכs fכ prכblεm wit di blכd vesel dεm na di bren, εn di divεlכpmεnt we de delay. Nɔto ɔlman go gɛt ɔl di sayn dɛm.
• Tritmɛnt dɛn de: Di tritmɛnt kin mɔ fɔ kɔntrol di sayn dɛm. Tin dɛn de lɛk lɛsa, mɛrɛsin, ɔpreshɔn, ɛn fizik tritmɛnt.
• Sɔpɔt yu pikin: I rili impɔtant fɔ ɛp yu pikin fɔ gɛt gud abit bɔt aw i luk. Tek ɛp frɔm dɔktɔ dɛn ɛn if nid de, yu go to pipul dɛn we de advays yu bɔt yu maynd.
• Nɔr frayd, gɛt fɔ no bɔt dis: Na nɔrmal tin fɔ fil wɔri wae yu lan bɔt dis kayn sik. Bɔt di tin we impɔtant pas ɔl na fɔ gɛt di rayt advays bɔt dɔktɔ ɛn mek dɛn no bɔt dis. Tɔk to yu dɔktɔ bɔt ɔltin.

Wi de wish yu ɛn yu pikin fɔ gladi ɛn gɛt wɛlbɔdi ɔltɛm!

` Sturge-Weber Syndrome, Pɔt wayn stɛyn, bɔn mak, glaukoma, fit, jenɛtik sik, pikin wɛlbɔdi