Yu pikin gɛt prɔblɛm fɔ kɔntrol di we aw i de sho in fes? Lɛ wi lan bɔt Moebius Syndrome!

Yu dɔn ɛva notis se i nɔ kin izi fɔ sɔm bebi dɛn fɔ smayl, mek fayn fayn fes, ɔ es dɛn aybrɔw ɔp we dɛn sɔprayz? Ɔ sɔntɛm dɛn kin gɛt prɔblɛm fɔ sok milk ɔ fɔ muv dɛn yay? Tide wi go tɔk bɔt wan rare kɔndishɔn we kin bi di kɔz fɔ dɛn tin ya. Dɛn kɔl am Moebius Syndrome . Nɔ wɔri, dis nɔr kin bi tin wae bɔrku pipul dɛn sabi. Lɛ wi tɔk bɔt am ditayli.

Wetin na di sik we dɛn kɔl Moebius Syndrome?

Fɔ tɔk am simpul wan, Moebius syndrome na wan nyurolɔjik disɔda we kin de we dɛn bɔn am . i kin apin we di pikin de insay di bεlε, we sכm im כtant nεv dεm na in sכkul (kranial nεv dεm) nכ de divεlכp fayn. Dɛn nerv ya kin kɔntrol di we aw wi de sho wi fes ɛn dɛn kin du bɔku tin dɛn lɛk fɔ muv wi yay rawnd. So dis kכndyushכn kin apin we dεn nεv dεm ya wik.

Dis na tin we nɔ kin apin so ɔltɛm . I kin afɛkt lɛk 20 pan 200,000 pikin dɛn. Pan ɔl we dɛn nɔ gɛt ɛni mɛrɛsin fɔ am naw, sɔm ɔpreshɔn ɛn tritmɛnt dɛn de we kin ɛp fɔ mek di fes fayn, fɔ kɔrɛkt di prɔblɛm dɛn we de na di yay, ɛn ɛp fɔ mek ɔda chenj dɛn we di sik kin mek na in bɔdi. Bɔrku tɛm, pipul dɛm wae gɛt dis sik kin liv nɔrmal layf.

Wetin na di sayn dɛm wae de sho se yu gɛt Moebius syndrome?

Moebius syndrome kin mek yu gɛt difrɛn kayn sayn dɛm. Bɔt di men ɛn kɔmɔn sayn na we di fes mɔsul dɛn wik . Dis kin afɛkt tin dɛm lɛk fɔ kɔntrol aw yu de fil, fɔ muv yu yay, fɔ sok ɛn swɛla, ɛn ɔda tin dɛm.

di pikin dεm we dεn bכn wit dis kכndyush כn kin at fכ gi dεn bεlε . Dɛn nɔ kin ebul fɔ suck fayn fayn wan frɔm di bɔdi ɔ bɔtul. I nɔ kin izi fɔ dɛn fɔ smayl, fɔ kray, ɔ fɔ es dɛn aybrɔw ɔp. Sɔntɛnde, dɛn nɔ kin ebul fɔ lɔk dɛn yay fayn ivin we dɛn de slip.

Ɔda sayn ɛn kɔndishɔn dɛn kin bi:

• Fɔ gɛt wan cleft palata .
• Ay dɛn we krɔs (strabismus) .
• Sɔm tin dɛn we nɔ fayn na di an ɛn fut (fɔ ɛgzampul, klɔbfut , finga dɛn we gɛt wɛb, finga dɛn we nɔ de).
• Fɔ sho se di divɛlɔpmɛnt delay .
• I nɔ de yɛri fayn .
• Lak fɔ di mɔsul dɛn (Hypotonia) .
• Nɔ ebul fɔ muv di yay frɔm wan say to di ɔda say.
• Smɔl jaw saiz (Micrognathia) .
• Poland syndrome (we di mכsul dεm nכ de divεlכp bכku na wan say na di chεst).

Sɔm pikin dɛm wae gɛt Moebius syndrome kin gɛt ɔtizm spɛktrum disɔda bak . As pikin dεn de ol, dεn kin gεt prכblεm dεm bak lεk we dεn de kכl tit כ we dεn de mis tit.

Wetin na di prɔblɛm dɛn we kin kam wit di sik we dɛn kɔl Moebius syndrome?

Pipul wae gɛt dis sik kin gɛt dis kayn sik wae sosayti nɔr kin gri wit bikɔs dɛn kin luk difrɛn smɔl ɛn kin biev smɔl difrɛn wae dɛn de tɔk to ɔda pipul dɛm ɛn smayl.

Tink bɔt am, bɔku tɛm wi fes kin sho aw wi de fil. If pɔsin smayl to yu, wi kin smayl bak ɔtomɛtik wan? Wi nɔ de du am wit ɔl wi at. Na dat wi de kol `fes mimicry`. Dis na aw wi kin ɔndastand ɔda pipul dɛn filin ɛn kɔnɛkt wit dɛn.

Bikɔs i nɔ kin izi fɔ pipul dɛn we gɛt Moebius syndrome fɔ falamakata ɔda pipul dɛn fes dis kayn we, i nɔ kin izi fɔ dɛn fɔ no ɛn ɔndastand aw ɔda pipul dɛn de fil . Sɔntɛnde, dɛn kin ivin tan lɛk se dɛn nɔ bisin bɔt aw ɔda pipul dɛn de fil.

Dɔn bak, bikɔs di sik kin afɛkt di we aw pipul dɛn de tɔk ɛn luk, sɔm pipul dɛn kin mistek tink se dɛn gɛt prɔblɛm wit dɛn maynd . Bɔt nɔto so i bi. Bikɔs ɔf dis mistek, sɔm stɔdi dɔn sho se dɛn pipul ya kin lɛf fɔ tray fɔ gɛt kɔnekshɔn wit ɔda pipul dɛn. Dis filin fɔ de yu wan ɛn fɔ de fa frɔm ɔda pipul dɛn (pan ɔl we sɔntɛm na bay we yu disayd fɔ du am) kin mek yu gɛt prɔblɛm wit yu maynd wɛl bɔdi lɛk pwɛl hat .

Wetin kin mek pɔsin gɛt di sik we dɛn kɔl Moebius syndrome?

as wi bin se, Moebius syndrome kin apin we di kraynia nεv dεm nכ de divεlכp fayn we di pikin de divεlכp na di bεlε. na dεn nεv dεm ya de kכri signal bitwin di bren, ed, nεk, εn chεst.

dis kכndyushכn de mεntal afekt di siks kraynia nεv (we de kכntro di yay muvmεnt) εn di sεvin kraynia nεv (we de kכntro di fes εksprεshכn). sכmtεm i kin afekt bak di divεlכpmεnt fכ כda nεv dεm, lεk di et nεv (we de kכntro di yεri) εn di nayn nεv (we de kכntro di tεst εn sכlow).

Masta sabi bukman dɛn stil nɔ no bɛtɛ bɛtɛ wan wetin kin mek dis sik, bɔt sɔm rizin dɛn de we kin apin:

• di jεnεtik mכtεshכn dεm we de afekt di kraynia nεv divεlכpmεnt we uman bεlε.
• di damej pan di bren stem kin apin we uman bεlε biכs di כksijεn כ bכdi we de gi di bren dכn dכn. Sɔm risach dɔn sho se if pɔsin tek sɔm mɛrɛsin ɔ drɔgs lɛk kɔkɛyn, i kin afɛkt di blɔd we i de gi.

Aw dɛn kin no se pɔsin gɛt di sik we dɛn kɔl Moebius syndrome?

Dɔktɔ dɛn kin no dis sik mɔ bay we dɛn de wach sɔm patikyula sayn dɛn :

• Dɛn de chɛk yu pikin fɔ si if in fes wik ɔ paralayz we dɔn de frɔm we dɛn bɔn am ɛn we nɔ de bɛtɛ as tɛm de go .
• Dɛn de tray fɔ si if dɛn kin tɔn wan ɔ ɔl tu yay dɛn na do ɔ na di sayd, bɔt dɛn nɔ kin ebul fɔ tɔn dɛn ɔp ɔ dɔŋ.

Dɔktɔ dɛn kin yuz sɔm tɛst dɛn fɔ no ɔda tin dɛn we kin mek pɔsin gɛt dɛn sik ya.I pɔsibul bak fɔ du tɛst.

Wetin na di tritmɛnt fɔ di sik we dɛn kɔl Moebius syndrome?

Di tritmɛnt we dɛn kin pik kin difrɛn difrɛn wan bay aw yu pikin in kɔndishɔn. Di tritmɛnt dɛn we dɛn kin yuz mɔ na ɔpreshɔn, fɔ mɛn dɛn bɔdi, ɛn fɔ sɔpɔt pɔsin in maynd .

Di ɔpreshɔn dɛn we dɛn kin du

Sɔm pan di ɔpreshɔn dɛm we dɛn kin du fɔ trit di sayn dɛm we de sho se pɔsin gɛt Moebius syndrome na:

• Cleft palate surgery : Dis kin kɔrɛkt wan cleft palate na pikin.
• "Smayl ɔpreshɔn" (Fes rianimɛshɔn ɔpreshɔn / "smayl ɔpreshɔn") : Dis na maykrosɔjri . dεn kin tek mכsul dεm frכm כda pat pan di pikin in bכdi εn transplant dεm na in fes. Dɔn di pikin kin ebul fɔ smayl ɛn mek ɔda tin dɛn we i de sho na in fes te to sɔm mak.
• Strabismus ɔpreshɔn : Dis kin min fɔ lus ɔ tayt di yay mɔsul dɛm fɔ mek di yay dɛn pɔynt na di sem say ɛn wok togɛda.

Ɔda tritmɛnt dɛn

Bebi ɛn pikin dɛn we gɛt dis sik kin gɛt tritmɛnt dɛn bak lɛk:

• fyzikal tεrapi : Dis tritmεnt de εp di pikin dεm εn pikin dεm fכ gεt gros mכtalman skil dεm we involv dεn big mכsul grup dεm. Wan dɔktɔ we de mɛn pikin kin ɛp pikin fɔ waka ɛn gɛt trɛnk.
• Tεrapi fכ tכk : Moebius syndrome kin afekt di pikin in ebul fכ sכk εn drink. I kin afɛkt bak di we aw big pikin dɛn kin ebul fɔ tɔk. Di wan dɛn we de stɔdi bɔt aw pɔsin kin tɔk ɛn langwej kin pe atɛnshɔn mɔ pan di prɔblɛm dɛn we kin apin to pikin dɛn we dɛn de it tin dɛn ɛn di prɔblɛm dɛn we kin apin we dɛn de tɔk ɛn langwej na di pikin dɛn we dɔn big.
• Trakshɔn ɛn kast (Ponsetti we) : Dis na tritmɛnt fɔ klab fut .
• Occupational therapy : Dɛn spɛshal pipul ya kin ɛp pikin dɛn fɔ du di wok dɛn we dɛn kin du ɛvride, fɔ divɛlɔp dɛn fayn fayn motoka skil dɛm , visual motor skills, ɛn sensory processing skills.
• Ɛp fɔ di wan dɛn we nɔ de yɛri fayn : Dis sik kin afɛkt di kraynia nɛv dɛm bak we de kɔntrol di we aw pɔsin de yɛri, so dɛn kin gi di ɛp we nid fɔ dat.
• Mental wɛl bɔdi sɔpɔt : Stɔdi dɔn sho se pipul dɛm wae gɛt Moebius syndrome kin gɛt pwɛl hat, wɔri, ɔr kin gɛt prɔblɛm wit dɛnsɛf. So, dɛn de ɛp dɛn wan dɛn de bak.

Wetin a fɔ ɛkspɛkt if mi pikin gɛt Moebius syndrome?

If yu pikin gɛt dis sik, yu kin ɛkspɛkt dɛn tin ya:

• I kin bɛnifit frɔm prɔblɛm dɛn we i gɛt wit in bɔdi, mɔ tin dɛn lɛk "smayl ɔpreshɔn."
• I kin nid fɔ gɛt fizik tritmɛnt, fɔ tɔk, ɛn ɔkupeshɔn tɛrapi.
• If divɛlɔpmɛnt delay de, .Di savis dɛm fɔ intavɛnshɔn kwik kwik wan kin bɛnifit.
• I kin nid ɛp fɔ mek i gɛt wɛlbɔdi.

Yu tink se di sik we dɛn kɔl Moebius syndrome kin afɛkt di layf we pɔsin de liv?

Nɔ, da kayn ɛfɛkt de nɔ de. Bɔrku pipul dɛm wae gɛt Moebius syndrome wae gɛt tritmɛnt de liv nɔrmal layf .

Yu tink se dɛn go ebul fɔ protɛkt di sik we dɛn kɔl Moebius syndrome?

Naw, no we nɔ de fɔ mek dis nɔ apin. Sayɛnsman dɛn stil de chɛk di tin dɛn we kin mek dɛn gɛt dis sik ɛn di tin dɛn we kin mek dɛn gɛt prɔblɛm.

Aw a go kia fɔ mi pikin ɛn misɛf?

Moebius syndrome kin afɛkt yu pikin bɔku we dɛn. We yu ɔndastand aw dis sik kin afɛkt yu pikin, dat go ɛp yu fɔ plan fɔ di sɔpɔt we i nid naw ɛn tumara bambay. Dɔn bak, as yu de plan, tink bɔt wetin yu go du fɔ ɛp yusɛf. Fɔ kia fɔ pikin we gɛt dis sik kin mek yu taya bad bad wan, i kin mek yu at pwɛl, ɛn i kin mek yu wangren de . So tek kia ɔf yusɛf.

• Fɛn sɔpɔt grup dɛm : Aks yu pikin in dɔktɔ bɔt sɔpɔt grup dɛm fɔ Moebius syndrome. We yu tɔk to ɔda pipul dɛn we de gɛt di sem prɔblɛm dɛn we yu gɛt, dat kin ɛp fɔ mek yu nɔ de yu wan.
• Share yu filin : Yu kin gɛt de (ɛn nɛt) wae yu kin fil wɔri, vɛks, ɔr frayd. Yu kin fil bad ɔ yu at pwɛl. Tink bɔt fɔ tɔk to pɔsin we de mɛn pipul dɛn.
• Tek brek : Fɔ kia fɔ pikin we gɛt dis sik kin rili taya. Padi ɛn fambul dɛn kin ɛp yu.

Us kwɛstyɔn dɛn a fɔ aks mi pikin in dɔktɔ?

Moebius syndrome na wan sik wae nɔr kin bɔrku. Sɔntɛm yu nɔ bin dɔn yɛri bɔt am bifo. Na sɔm kwɛstyɔn dɛn we yu kin aks yu pikin in dɔktɔ:

• Us kraynia nɛv dɛn kin afɛkt?
• Us kayn spɛshal pipul dɛn de wae kin ɛp fɔ gɛt dɛn sik ya?
• A fɔ tink bɔt fɔ mek dɛn du ɔpreshɔn pan mi pikin?
• Yu tink se mi famili fɔ gɛt tɛst ɔ advays bɔt dɛn jɛnɛtiks?

If yu pikin gɛt Moebius syndrome, yu kin spɛn di fɔs sɔm awa, de, ɛn wik afta di sik fɔ tray fɔ ɔndastand aw dis sik go afɛkt yu pikin in layf ɛn yu yon. Yu kin fil vɛks, wɔri, ɛn yu kin fil bad. Yu pikin in mɛdikal tim go ɔndastand aw yu go biev. Dɛn go tek dɛn tɛm fɔ ansa yu kwɛstyɔn dɛn bɔt wetin dɛn go du fɔ ɛp yu pikin ɛn wetin yu go du fɔ kia fɔ yu pikin.

Fɔ dɔn, mɛmba dis.

Pan ɔl we Moebius syndrome na wan prɔblɛm we nɔ izi fɔ yu, if yu gi yu pikin di rayt advays, tritmɛnt, ɛn kia fɔ yu wit lɔv, yu kin ɛp yu fɔ liv bɛtɛ layf. Mɛmba se nɔto yu wangren de. I impɔtant fɔ gɛt di ɛp we yu nid, ɛn fɔ kia fɔ yusɛf. Fɔ kɔntinyu fɔ strɔng ɛn fɔ tink gud wanDis joyn go bi big trɛnk fɔ yu ɛn yu pikin.

Moebius Syndrome, Fes Nεv, Bכn Difεkt, Pikin Wεlth, Nyurolכjik Sik, Fes εksprεshכn