Ngaba umntwana wakho uneengxaki zokulawula imbonakalo yobuso? Masifunde ngeMoebius Syndrome!

Ngaba wakha waphawula ukuba ezinye iintsana zinengxaki yokuncuma, ukwenza ubuso obuhle, okanye ukuphakamisa amashiya azo xa zimangaliswa? Okanye mhlawumbi zinengxaki yokumunca okanye ukuhambisa amehlo azo? Namhlanje siza kuthetha ngemeko engaqhelekanga enokuba ngunobangela wezi zinto. Ibizwa ngokuba yiMoebius Syndrome . Ungakhathazeki, oku kusenokungabi yinto abantu abaninzi abayaziyo. Makhe sithethe ngayo ngokweenkcukacha.

Yintoni iMoebius Syndrome?

Ngamafutshane, i-Moebius syndrome sisifo semithambo-luvo esibakho xa umntwana ezalwa . Senzeka xa umntwana esesibelekweni, xa ezinye iimithambo-luvo ezibalulekileyo ekhayeni lakhe (imithambo-luvo yentloko) zingakhuli kakuhle. Ezi mithambo-luvo zilawula ubuso bethu kwaye zenza izinto ezininzi, njengokuhambisa amehlo ethu. Ngoko ke le meko yenzeka xa kukho ubuthathaka kwezi mithambo-luvo.

Esi sisifo esingaqhelekanga kakhulu . Sichaphazela malunga neentsana ezingama-20 kwiintsana ezingama-200,000. Nangona okwangoku kungekho nyango lwaso, kukho utyando kunye nonyango olunokunceda ukuphucula iimpawu zobuso, ukulungisa iingxaki zamehlo, kunye nokunceda kwezinye utshintsho lomzimba olubangelwa sesi sifo. Kwiimeko ezininzi, abantu abanale meko banokuphila ubomi obuqhelekileyo.

Zithini iimpawu zesifo seMoebius?

Isifo iMoebius sinokubangela iimpawu ezahlukeneyo. Kodwa uphawu oluphambili noluqhelekileyo bubuthathaka kwizihlunu zobuso . Oku kunokuchaphazela izinto ezifana nokulawula imbonakalo yobuso, ukuhambisa amehlo, ukumunca nokuginya, nokunye.

Iintsana ezizelwe nale meko zinobunzima bokuncancisa . Zisenokungakwazi ukuncancisa kakuhle ebeleni okanye ebhotileni. Zisenokuba nobunzima bokuncuma, ukufinga iintshiya, okanye ukuphakamisa amashiya azo. Ngamanye amaxesha, zisenokungakwazi ukuvala amehlo azo kakuhle nokuba zilele.

Ezinye iimpawu kunye neemeko zingabandakanya:

• Ukuba nenkalakahla eqhekekileyo .
• Amehlo anqamlezileyo (strabismus) .
• Iziphene ezithile ezandleni nasezinyaweni (umzekelo, unyawo olugobileyo , iminwe egobileyo, iminwe engekhoyo).
• Ukubonisa ukulibaziseka kophuhliso .
• Ukulahlekelwa kukuva .
• Ukungabikho kwemisipha (Hypotonia) .
• Ukungakwazi ukuhambisa amehlo ukusuka kwelinye icala ukuya kwelinye.
• Ubukhulu bomhlathi omncinci (Micrognathia) .
• Isifo sasePoland (apho kukho uphuhliso oluncinci lwemisipha kwelinye icala lesifuba).

Abanye abantwana abane-Moebius syndrome banokuba ne -autism spectrum disorder . Njengoko abantwana bekhula, banokuba neengxaki ezifana nokuqhekeka kwamazinyo okanye ukungabikho kwamazinyo.

Ziziphi iingxaki zesifo seMoebius?

Abantu abanale meko banokungamkeleki kuluntu kuba babonakala bahlukile kancinci kwaye baziphatha ngendlela eyahlukileyo xa bethetha nabanye kwaye bencumile.

Cinga ngako oku, ubuso bethu budla ngokutyhila iimvakalelo zethu. Ukuba umntu ukuncumela, ngaba nathi siyancuma ngokuzenzekelayo? Asikwenzi ngabom. Yiloo nto siyibiza ngokuba yi-'face mimicry'. Le yindlela esiziqonda ngayo iimvakalelo zabanye abantu kwaye sinxibelelana nabo.

Ngenxa yokuba abantu abane-Moebius syndrome benobunzima bokulinganisa inkangeleko yobuso babanye abantu ngale ndlela, banokuba nobunzima bokubona nokuqonda iimvakalelo zabanye abantu . Ngamanye amaxesha banokubonakala bengenamdla kwiimvakalelo zabanye abantu.

Kwakhona, ngenxa yokuba le meko ichaphazela indlela abantu abathetha nabajonga ngayo, abanye abantu banokukholelwa ngempazamo ukuba banokukhubazeka kwengqondo . Kodwa akunjalo. Ngenxa yale ngcamango iphosakeleyo, ezinye izifundo zibonise ukuba aba bantu banokuyeka ukuzama ukunxibelelana nabanye. Olu luvo lokuba bodwa kunye nokwahlukaniswa (nangona mhlawumbi ngokuzikhethela) lunokukhokelela kwiingxaki zempilo yengqondo ezifana nokudakumba .

Yintoni ebangela i-Moebius syndrome?

Njengoko besitshilo ngaphambili, i-Moebius syndrome yenzeka xa imithambo-luvo yentloko ingakhuli kakuhle ngelixa umntwana esakhula esibelekweni. Le mithambo-luvo yileyo ithwala imiqondiso phakathi kwengqondo, intloko, intamo, nesifuba.

Le meko ichaphazela kakhulu umthambo wesithandathu wentloko (olawula intshukumo yamehlo) kunye nomthambo wesixhenxe wentloko (olawula imbonakalo yobuso). Ngamanye amaxesha inokuchaphazela nophuhliso lweminye imithambo-luvo, njengemithambo-luvo yesibhozo (elawula ukuva) kunye nomthambo wesithoba (olawula incasa nokuginya).

Iingcali azikayazi kakuhle into ebangela oku, kodwa kukho izizathu ezimbalwa ezinokwenzeka:

• Utshintsho lwemfuza oluchaphazela uphuhliso lwemithambo-luvo yentloko ngexesha lokukhulelwa.
• Ukonakala kwe-brainstem kunokwenzeka ngexesha lokukhulelwa ngenxa yokuncipha kwe-oksijini okanye ukunikezelwa kwegazi engqondweni. Olunye uphando lubonisa ukuba ukuchatshazelwa ngamayeza athile okanye iziyobisi ezifana ne-cocaine kunokuchaphazela ukunikezelwa kwegazi.

Ifunyanwa njani i-Moebius syndrome?

Oogqirha baxilonga le meko ngokujonga iimpawu ezithile :

• Umntwana wakho ujongwa ukuba akabonakali ebuthathaka bobuso okanye ukukhubazeka okukhoyo ukususela ekuzalweni kwakhe kwaye akuphucuki ngokuhamba kwexesha .
• Bazama ukubona ukuba bangakwazi na ukujika iliso elinye okanye omabini ngaphandle okanye bajonge ecaleni, kodwa bangakwazi ukuwajika phezulu nasezantsi.

Oogqirha banokusebenzisa iimvavanyo ezithile ukuze bafumanise ezinye iimeko ezinokubangela ezi mpawu.Kukwakho nokwenzeka kokwenza iimvavanyo.

Ziziphi iindlela zonyango lwe-Moebius syndrome?

Iindlela zonyango ziyahluka ngokuxhomekeke kwimeko yomntwana wakho. Unyango oluqhelekileyo luquka utyando, unyango lomzimba, kunye nenkxaso yempilo yengqondo .

Utyando

Ezinye zeenkqubo zotyando ezenziweyo ukunyanga iimpawu zesifo seMoebius zezi:

• Utyando lwe-Cleft palate : Olu lulungisa i-cleft palate emntwaneni.
• "Utyando lokuncuma" (Utyando lokuvuselela ubuso / "utyando lokuncuma") : Olu lutyando oluncinci . Izihlunu zithathwa kwenye inxalenye yomzimba womntwana zize zifakwe ebusweni. Emva koko umntwana uyakwazi ukuncuma aze enze ezinye imbonakalo yobuso ukuya kuthi ga kwinqanaba elithile.
• Utyando lweStrabismus : Oku kuquka ukukhulula okanye ukuqinisa izihlunu zamehlo ukuze amehlo akhombe kwicala elinye aze asebenzisane.

Ezinye iindlela zonyango

Iintsana nabantwana abanale meko banokufumana unyango olufana nolu:

• Unyango lomzimba : Olu nyango lunceda iintsana nabantwana ukuba baphuhlise izakhono zomzimba ezibandakanya amaqela amakhulu emisipha. Ingcali yonyango lomzimba inganceda umntwana ukuba ahambe aze aphuhlise amandla.
• Unyango lokuthetha : Isifo seMoebius sinokuchaphazela amandla omntwana okuncancisa nokusela. Sinokuchaphazela nokukwazi ukuthetha kwabantwana abadala. Iingcali zezifo zolwimi lokuthetha zigxila kwiingxaki zokutya kwiintsana nakwiingxaki zokuthetha nolwimi kubantwana abadala.
• Ukutsala kunye nokufaka i-cast (indlela yePonsetti) : Olu lunyango lweenyawo ezisicaba .
• Unyango lomsebenzi : Ezi ngcali zinceda abantwana ukuba benze imisebenzi yemihla ngemihla, baphuhlise izakhono zabo zentshukumo entle , izakhono zokubona, kunye nezakhono zokucubungula izivamvo.
• Uncedo lokuphazamiseka kokuva : Le meko inokuchaphazela nemithambo-luvo yentloko elawula ukuva, ngoko ke uncedo olufunekayo luyabonelelwa ngaloo nto.
• Inkxaso yempilo yengqondo : Izifundo zibonise ukuba abantu abane-Moebius syndrome banokuba neengxaki zokudakumba, ixhala, okanye ukuzithemba. Ke ngoko, uncedo luyabonelelwa nakwabo.

Yintoni endimele ndiyilindele ukuba umntwana wam une-Moebius syndrome?

Ukuba umntwana wakho unale meko, ungalindela oku kulandelayo:

• Unokufumana uncedo kwiingxaki zomzimba, ingakumbi izinto ezifana "notyando lokuncuma."
• Usenokufuna unyango lomzimba, unyango lokuthetha, kunye nonyango lomsebenzi.
• Ukuba kukho ukulibaziseka kophuhliso,Iinkonzo zokungenelela kwangethuba zinokuba luncedo.
• Usenokufuna uncedo lwezempilo yengqondo.

Ngaba i-Moebius syndrome ichaphazela ubomi?

Hayi, akukho mpembelelo injalo. Uninzi lwabantu abane-Moebius syndrome abafumana unyango baphila ubomi obuqhelekileyo .

Ngaba i-Moebius syndrome ingathintelwa?

Okwangoku akukho ndlela yokuthintela oku. Izazinzulu zisaphanda izizathu kunye nezinto ezinokubangela umngcipheko.

Ndingamnyamekela njani umntwana wam kunye nam?

Isifo iMoebius sinokuchaphazela umntwana wakho ngeendlela ezininzi. Ukuqonda indlela esi sifo esimchaphazela ngayo umntwana wakho kuya kukunceda ucwangcise inkxaso ayidingayo ngoku nakwixesha elizayo. Kwakhona, njengoko uceba, cinga ngento onokuyenza ukuze uzincede. Ukunyamekela umntwana onesi sifo kunokuba yinto edinisayo, ecaphukisayo, neyodwa . Ngoko ke zikhathalele.

• Fumana amaqela enkxaso : Buza ugqirha womntwana wakho malunga namaqela enkxaso yesifo seMoebius. Ukuthetha nabanye abajongene nemingeni efanayo nawe kunokunceda ukunciphisa isizungu.
• Yabelana ngeemvakalelo zakho : Usenokuba neentsuku (nobusuku) apho uziva uxhalabile, unomsindo, okanye usoyika. Usenokuziva ulusizi okanye udandathekile. Cinga ngokuthetha nogqirha wengqondo.
• Phumla : Kunokuba nzima kakhulu ukunyamekela umntwana onesi sifo. Abahlobo nosapho banokukunceda.

Yeyiphi imibuzo endifanele ndiyibuze ugqirha womntwana wam?

Isifo iMoebius sisifo esingaqhelekanga. Usenokuba awuzange uve ngaso ngaphambili. Nazi ezinye zemibuzo onokuzibuza ugqirha womntwana wakho:

• Zeziphi iimithambo-luvo zentloko ezichaphazelekileyo?
• Ngabaphi iingcali ezikhoyo ezinokunceda kwezi mpawu?
• Ngaba ndifanele ndicinge ngokwenza utyando lomntwana wam?
• Ngaba amalungu osapho lwam kufuneka afumane uvavanyo lwemfuza okanye ingcebiso?

Ukuba umntwana wakho une-Moebius syndrome, ungachitha iiyure ezimbalwa zokuqala, iintsuku, kunye neeveki emva kokuba uxilongiwe uzama ukuqonda indlela le meko eya kuyichaphazela ngayo ubomi bomntwana wakho nobakho. Ungaziva unomsindo, uxhalabile, kwaye uxinezelekile. Iqela lezonyango lomntwana wakho liya kuqonda indlela osabela ngayo. Baza kuthatha ixesha lokuphendula imibuzo yakho malunga noko banokukwenza ukunceda umntwana wakho kunye noko unokukwenza ukunyamekela umntwana wakho.

Okokugqibela, khumbula oku.

Nangona i-Moebius syndrome inzima kakhulu, ngengcebiso efanelekileyo yezonyango, unyango, kunye nenkathalo yothando, ungamnceda umntwana wakho aphile ubomi obungcono. Khumbula, awuwedwa. Kubalulekile ukufumana uncedo olufunayo, nokuzinyamekela. Hlala uqinile kwaye unethemba.Olu hambo luza kuba ngumthombo omkhulu wamandla kuwe nakumntwana wakho.

Isifo sikaMoebius , Imithambo-luvo yoBuso, Iziphene zokuzalwa, Impilo yoMntwana, Izifo zeNeurological, Ukubonakala koBuso