Ingabe ingane yakho inezinkinga zokulawula ukubonakaliswa kobuso? Ake sifunde nge-Moebius Syndrome!

Wake waphawula ukuthi ezinye izingane zikuthola kunzima ukumamatheka, ukwenza ubuso obuhle, noma ukuphakamisa amashiya azo uma zimangele? Noma mhlawumbe zinenkinga yokumunca noma ukuhambisa amehlo azo? Namuhla sizokhuluma ngesimo esingavamile esingaba imbangela yalezi zinto. Sibizwa ngokuthi i-Moebius Syndrome . Ungakhathazeki, lokhu kungase kungabi yinto abantu abaningi abajwayelene nayo. Ake sixoxe ngakho ngokuningiliziwe.

Iyini i-Moebius Syndrome?

Kalula nje, i-Moebius syndrome iyisifo sezinzwa esiba khona lapho umntwana ezalwa . Siba khona lapho umntwana esesibelethweni, lapho ezinye izinzwa ezibalulekile ekhanda lakhe (izinzwa ze-cranial) zingakhuli kahle. Lezi zinzwa zilawula ukubukeka kobuso bethu futhi zenza izinto eziningi, njengokuhambisa amehlo ethu. Ngakho-ke lesi simo senzeka lapho kunobuthakathaka kulezi zinzwa.

Lesi yisimo esingavamile kakhulu . Sithinta izingane ezingaba ngu-20 kwezingu-200,000. Nakuba okwamanje kungekho ukwelashwa kwaso, kunezindlela zokuhlinzwa kanye nokwelashwa okungasiza ekuthuthukiseni izici zobuso, ukulungisa izinkinga zamehlo, kanye nokusiza ngezinye izinguquko zomzimba ezibangelwa yilesi simo. Ezimweni eziningi, abantu abanalesi simo bangaphila impilo evamile.

Ziyini izimpawu ze-Moebius syndrome?

I-Moebius syndrome ingadala izimpawu ezahlukahlukene. Kodwa uphawu oluyinhloko noluvame kakhulu ubuthakathaka emisipheni yobuso . Lokhu kungathinta izinto ezifana nokulawula ukubonakaliswa kobuso, ukuhambisa amehlo, ukumunca nokugwinya, nokuningi.

Izingane ezizalwa nalesi simo zinobunzima bokuncelisa . Zingase zingakwazi ukuncelisa kahle ebeleni noma ebhodleleni. Zingase zibe nobunzima bokumomotheka, ukufinya ubuso, noma ukuphakamisa amashiya azo. Ngezinye izikhathi, zingase zingakwazi ukuvala amehlo azo kahle ngisho nalapho zilele.

Ezinye izimpawu nezimo zingafaka:

• Ukuba nomlomo oqhekekile .
• Amehlo aphambene (strabismus) .
• Amaphutha athile ezandleni nasezinyaweni (isibonelo, unyawo olugobile , iminwe enezintambo, iminwe engekho).
• Kubonisa ukubambezeleka kwentuthuko .
• Ukulahlekelwa ukuzwa .
• Ukuntuleka kwemisipha (i-Hypotonia) .
• Ukungakwazi ukuhambisa amehlo kusukela kolunye uhlangothi kuya kolunye.
• Usayizi womhlathi omncane (i-Micrognathia) .
• I-Poland syndrome (lapho kunokuthuthuka okuncane kwemisipha kolunye uhlangothi lwesifuba).

Ezinye izingane ezine-Moebius syndrome nazo zingase zibe ne -autism spectrum disorder . Njengoba izingane zikhula, zingase zibe nezinkinga ezifana nokuphuma kwamazinyo noma ukulahleka kwamazinyo.

Yiziphi izinkinga ze-Moebius syndrome?

Abantu abanalesi simo bangase bangamukelwa umphakathi ngoba babukeka behlukile kancane futhi baziphatha ngendlela ehlukile kancane lapho bekhuluma nabanye futhi bemomotheka.

Cabanga ngakho, ubuso bethu buvame ukuveza imizwa yethu. Uma othile emomotheka, ingabe nathi siyamomotheka ngokuzenzakalelayo? Asikwenzi ngamabomu. Yilokho esikubiza ngokuthi 'ukulingisa ubuso'. Yile ndlela esiqonda ngayo imizwa yabanye abantu futhi sixhumane nabo.

Ngenxa yokuthi abantu abane-Moebius syndrome banenkinga yokulingisa ukubukeka kobuso babanye abantu ngale ndlela, bangase babe nobunzima bokubona nokuqonda imizwa yabanye abantu . Ngezinye izikhathi bangase babonakale bengenandaba nemizwa yabanye abantu.

Futhi, ngenxa yokuthi lesi simo sithinta indlela abantu abakhuluma nababukeka ngayo, abanye abantu bangase bakholelwe ngephutha ukuthi banokukhubazeka kwengqondo . Kodwa akunjalo. Ngenxa yalokhu kuqonda okungalungile, ezinye izifundo zikhombisile ukuthi laba bantu bangase bayeke ukuzama ukuxhumana nabanye. Lo muzwa wokuba nesizungu kanye nokuzihlukanisa (nakuba mhlawumbe ngokuzikhethela) ungaholela ezinkingeni zempilo yengqondo njengokucindezeleka .

Yini ebangela i-Moebius syndrome?

Njengoba sishilo ngaphambili, i-Moebius syndrome yenzeka lapho imizwa ye-cranial ingakhuli kahle ngesikhathi umntwana esakhula esibelethweni. Le mizwa yileyo ethwala izimpawu phakathi kobuchopho, ikhanda, intamo kanye nesifuba.

Lesi simo sithinta kakhulu inzwa yesithupha ye-cranial (elawula ukunyakaza kwamehlo) kanye nenzwa yesikhombisa ye-cranial (elawula ukubonakaliswa kobuso). Ngezinye izikhathi singathinta nokuthuthukiswa kwezinye izinzwa, njengenzwa yesishiyagalombili (elawula ukuzwa) kanye nenzwa yesishiyagalolunye (elawula ukunambitha nokugwinya).

Ochwepheshe abakakazi kahle ukuthi yini ebangela lokhu, kodwa kunezizathu ezimbalwa ezingaba khona:

• Ukuguqulwa kwezakhi zofuzo okuthinta ukukhula kwemizwa yekhanda ngesikhathi sokukhulelwa.
• Ukulimala kwe-brainstem kungenzeka ngesikhathi sokukhulelwa ngenxa yokuncipha komoya-mpilo noma ukunikezwa kwegazi ebuchosheni. Olunye ucwaningo lubonisa ukuthi ukuchayeka emithini ethile noma ezidakamizweni ezifana ne-cocaine kungathinta ukunikezwa kwegazi.

I-Moebius syndrome itholakala kanjani?

Odokotela baxilonga lesi simo ngokubheka izimpawu ezithile :

• Ingane yakho ihlolwa ukuthi ayinabo yini ubuthakathaka bobuso noma ukukhubazeka obekukhona kusukela yazalwa futhi okungathuthuki ngokuhamba kwesikhathi .
• Bazama ukubona ukuthi bangakwazi yini ukubheka iso elilodwa noma womabili ngaphandle noma eceleni, kodwa bangakwazi ukuwabheka phezulu naphansi.

Odokotela bangase basebenzise izivivinyo ezithile ukuze banqume ezinye izimo ezingase zibangele lezi zimpawu.Kukhona futhi ithuba lokwenza izivivinyo.

Yiziphi izindlela zokwelapha i-Moebius syndrome?

Izinketho zokwelapha ziyahlukahluka kuye ngesimo sengane yakho. Izindlela zokwelapha ezivame kakhulu zifaka phakathi ukuhlinzwa, ukwelashwa ngokomzimba, kanye nokusekelwa kwempilo yengqondo .

Ukuhlinzwa

Ezinye zezindlela zokuhlinzwa ezenzelwe ukwelapha izimpawu ze-Moebius syndrome yilezi:

• Ukuhlinzwa kwe-Cleft palate : Lokhu kulungisa i-cleft palate enganeni.
• "Ukuhlinzwa kokumamatheka" (Ukuhlinzwa kokuvuselela ubuso / "ukuhlinzwa kokumamatheka") : Lokhu ukuhlinzwa okuncane . Imisipha ithathwa kwenye ingxenye yomzimba wengane bese itshalwa ebusweni. Ingane iyakwazi ukumamatheka futhi yenze ezinye izimo zobuso ngezinga elithile.
• Ukuhlinzwa kwe-Strabismus : Lokhu kuhilela ukukhulula noma ukuqinisa imisipha yamehlo ukuze amehlo akhombe ohlangothini olufanayo futhi asebenze ndawonye.

Ezinye izindlela zokwelapha

Izinsana nezingane ezinalesi simo nazo zingase zithole ukwelashwa okufana nalokhu:

• Ukwelashwa ngokomzimba : Lokhu kwelashwa kusiza izinsana nezingane ukuthuthukisa amakhono okunyakaza ahlanganisa amaqembu amakhulu emisipha yazo. Uchwepheshe wezokwelapha ngokomzimba angasiza ingane ukuba ihambe futhi ithuthukise amandla.
• Ukwelashwa Kwenkulumo : I-Moebius syndrome ingathinta ikhono lengane lokuncela nokuphuza. Ingathinta nekhono lezingane ezindala lokukhuluma. Odokotela bezifo zolimi lwenkulumo bagxila ezinkingeni zokudla ezinganeni kanye nezinkinga zenkulumo nolimi ezinganeni ezindala.
• Ukudonsa kanye nokufaka i-cast (indlela ye-Ponsetti) : Lokhu kuyindlela yokwelapha izinyawo ezigobile .
• Ukwelashwa Kwabasebenzi : Laba ochwepheshe basiza izingane ukwenza imisebenzi yansuku zonke, ukuthuthukisa amakhono azo okunyakaza okuhle , amakhono okunyakaza okubonakalayo, kanye namakhono okucubungula izinzwa.
• Usizo lokukhubazeka kokuzwa : Lesi simo singathinta nezinzwa zekhanda ezilawula ukuzwa, ngakho-ke usizo oludingekayo lunikezwa ngalokho.
• Ukusekelwa kwempilo yengqondo : Izifundo zikhombisile ukuthi abantu abane-Moebius syndrome bangase babe nezinkinga zokucindezeleka, ukukhathazeka, noma ukuzethemba. Ngakho-ke, usizo lunikezwa nalabo.

Yini okufanele ngiyilindele uma ingane yami ine-Moebius syndrome?

Uma ingane yakho inalesi simo, ungalindela okulandelayo:

• Angazuza ezinkingeni zomzimba, ikakhulukazi izinto ezifana "nokuhlinzwa kokumamatheka."
• Angase adinge ukwelashwa ngokomzimba, ukwelashwa ngenkulumo, kanye nokwelashwa ngokomsebenzi.
• Uma kukhona ukubambezeleka kwentuthuko,Izinsizakalo zokungenelela kusenesikhathi zingaba yinzuzo.
• Angase adinge usizo lwezempilo yengqondo.

Ingabe i-Moebius syndrome ithinta impilo yomuntu?

Cha, awukho umphumela onjalo. Iningi labantu abane-Moebius syndrome abathola ukwelashwa baphila impilo ejwayelekile .

Ingabe i-Moebius syndrome ingavinjelwa?

Okwamanje ayikho indlela yokuvimbela lokhu. Ososayensi basaphenya ngezimbangela kanye nezici eziyingozi.

Ngingazinakekela kanjani ingane yami kanye nami?

I-Moebius syndrome ingathinta ingane yakho ngezindlela eziningi. Ukuqonda ukuthi lesi simo siyithinta kanjani ingane yakho kuzokusiza ukuthi uhlele ukwesekwa abakudingayo manje nasesikhathini esizayo. Futhi, njengoba uhlela, cabanga ngalokho ongakwenza ukuze uzisize. Ukunakekela ingane enalesi simo kungaba yinto ekhathazayo kakhulu, ekhungathekisayo, futhi enesizungu . Ngakho-ke zinakekele.

• Thola amaqembu okusekela : Buza udokotela wengane yakho ngamaqembu okusekela e-Moebius syndrome. Ukukhuluma nabanye ababhekene nezinselele ezifanayo nezakho kungasiza ekunciphiseni isizungu.
• Yabelana ngemizwa yakho : Ungase ube nezinsuku (nobusuku) lapho uzizwa ukhathazekile, uthukuthele, noma wesaba. Ungase uzizwe udangele noma ucindezelekile. Cabanga ukukhuluma nodokotela wezokwelapha.
• Phumula : Kungaba nzima kakhulu ukunakekela ingane enalesi simo. Abangane nomndeni bangase bakwazi ukukusiza.

Yimiphi imibuzo okufanele ngiyibuze udokotela wengane yami?

I-Moebius syndrome iyisimo esingavamile. Kungenzeka ukuthi awukaze uzwe ngayo ngaphambili. Nansi eminye imibuzo ongayibuza udokotela wengane yakho:

• Yimiphi imizwa yekhanda ethintekile?
• Hlobo luni lochwepheshe abakhona abangasiza ngalezi zimpawu?
• Ingabe kufanele ngicabangele ukuhlinzwa kwengane yami?
• Ingabe amalungu omndeni wami kufanele athole ukuhlolwa kofuzo noma ukwelulekwa?

Uma ingane yakho ine-Moebius syndrome, ungase uchithe amahora ambalwa okuqala, izinsuku, namasonto ngemva kokuxilongwa uzama ukuqonda ukuthi lesi simo sizothinta kanjani impilo yengane yakho neyakho. Ungase uzizwe uthukuthele, ukhathazekile, futhi ukhungathekile. Ithimba lezokwelapha lengane yakho lizoqonda ukusabela kwakho. Bazothatha isikhathi sokuphendula imibuzo yakho mayelana nokuthi yini abangayenza ukusiza ingane yakho nokuthi yini ongayenza ukuze unakekele ingane yakho.

Ekugcineni, khumbula lokhu.

Nakuba i-Moebius syndrome iyisimo esiyinselele, ngeseluleko esifanele sezokwelapha, ukwelashwa, kanye nokunakekelwa ngothando, ungasiza ingane yakho iphile impilo engcono. Khumbula, awuwedwa. Kubalulekile ukuthola usizo oludingayo, nokuzinakekela. Ukuhlala uqinile futhi unethembaLolu hambo luzoba umthombo omkhulu wamandla kuwe nakumntanakho.

I-Moebius Syndrome, Imizwa Yobuso, Ukukhubazeka Kokuzalwa, Impilo Yengane, Izifo Zezinzwa, Ukubonakaliswa Kobuso