Ngaba wakha waphawula ukuba iimpawu zobuso bomntwana wakho, ingakumbi amehlo kunye namashiya, aziqhelekanga? Okanye wakha waphawula ukuba umntwana wakho unokulibaziseka kokukhula okanye ubuthathaka bemisipha? Kuqhelekile ukuba abazali bazive besoyika xa bebona izinto ezinje. Namhlanje siza kuthetha ngeKabuki Syndrome, imeko engaqhelekanga kakhulu yemfuza ebonisa ezi mpawu.
Kutheni ibizwa ngokuba yi-'Kabuki'? Yafunyanwa njani le nto?
Eli bali liqala eJapan ngeminyaka yoo-1960. Amaqela amabini oogqirha apho abona iqela labantwana abaneempawu ezingaqhelekanga, ezingadibaniyo. Aba bantwana babenenkangeleko ekhethekileyo ebusweni babo. Amashiya abo ayegobile phezulu, iinkophe zabo zaziziingqindilili kakhulu, namehlo abo ayemade .
Khawuthelekelele, abadlali kwimidlalo yemveli yaseJapan ethi "kabuki" banxiba izithambiso ezikhethekileyo ukuze bagxininise ezi mpawu. Ngoko ke, ngenxa yokufana phakathi kwenkangeleko yobuso baba bantwana kunye nezithambiso zabadlali be-kabuki, omnye ugqirha wayibiza le meko ngokuthi "kabuki makeup syndrome." Kamva, yafinyezwa yaba yi "Kabuki Syndrome (KS).
Ekuqaleni, kwakucingwa ukuba esi sifo sasifumaneka eJapan kuphela. Kodwa kamva, abantwana abanale sifo bafunyanwa kwihlabathi liphela, phakathi kwamaqela eentlanga ezahlukeneyo. Esi sisifo esingaqhelekanga kakhulu. Malunga nomntwana omnye kwabangama-32,000 ozelwe nale meko uyachaphazeleka.
Yintoni kanye kanye iKabuki Syndrome?
Ngamafutshane, i-Kabuki syndrome yimeko yemfuza . Oko kukuthi, ibangelwa kukutshintsha kwezakhi zofuzo emizimbeni yethu. Yimeko eyenzeka xa umntu ezalwa. Ezinye iimpawu zinokubonakala kwangoko emva kokuzalwa. Ezinye zivela xa umntwana ekhula.
Into ebalulekileyo kukuba ayingabo bonke abantwana abanesi sifo abaya kuba neempawu ezifanayo. Umntu ngamnye unokuba neempawu ezahlukeneyo.
Ngamanye amaxesha kunokuba nzima ukufumanisa ngokuchanekileyo isifo esingaqhelekanga esifana nesi, njengoko oogqirha abaninzi besenokuba abazange basibone isigulana esifana nesi kumsebenzi wabo. Kwakhona, ezinye zeempawu ziyafana nezezinye izifo, nto leyo eyenza ukuxilongwa kube nzima.
Ziziphi iimpawu eziphambili zesi sifo?
Ukongeza kwiimpawu zobuso ezikhethekileyo esizixubushileyo ngaphambili, kukho nezinye iimpawu ezininzi ezinokubonwa. Masiziqonde ngokucacileyo kwitheyibhile.
| Uhlobo oluneempawu | Izinto onokuzibona |
|---|---|
| Ubuso nentloko ezinxulumene |
|
| Amathambo kunye nemisipha | |
| Ukukhula kunye neenkqubo zomzimba |
Ngaba kukho umahluko phakathi kobukrelekrele nokuziphatha?
Ewe, uninzi lwaba bantwana banokuba nokukhubazeka kwengqondo okuncinci ukuya kokuphakathi . Basenokuba nokulibaziseka kokukhula okufana nokuthetha nokuhamba.
Ezinye iindlela zokuziphatha zinokufana neemeko ezifana ne-autism okanye i-OCD (Obsessive-Compulsive Disorder). Umzekelo:
- Ukusoloko uzama ukufaka izinto emlonyeni wakho uze uzihlafune.
- Ukusabela ngokugqithisileyo kwizandi okanye kwezinye izinto ezikhuthazayo.
- Ukwala ukutya okunencasa okanye ubume obuthile.
Njengoko umntwana ekhula, unokubonisa iimpawu zeemeko ezinje ngexhala okanye ukudakumba.
Kodwa aba bantwana banezakhono ezikhethekileyo. Abazali badla ngokuthi aba bantwana bayawuthanda umculo.Banesakhono esimangalisayo sokukhumbula iingoma ezithile. Kwakhona, abanye banekhono elikhethekileyo lokukhumbula ubuso kunye neentsuku.
Yintoni isizathu sale nto? I-genetics...
Oososayensi ukuza kuthi ga ngoku bafumanise utshintsho olukhulu lwezakhi zofuzo olubangela esi sifo.
1. Utshintsho kwi-gene ye-KMT2D: Le yimbangela yabantu abamalunga nama-75% abane-Kabuki syndrome.
2. Utshintsho kwi-gene ye-KDM6A: Malunga ne-9% yabantu abangenayo i-mutation ye-KMT2D banalo olu tshintsho.
Ixesha elininzi, olu tshintsho lwemfuza lutshintsho olutsha oluvela emzimbeni womntwana. Oko kukuthi, aluzuzwa kumama okanye kutata. Nangona kunjalo, kunqabile kakhulu ukuba umntwana azuze esi sifo komnye wabazali.
Iphathwa njani?
Okokuqala, akukho nyango lwe-Kabuki syndrome . Asikuko ukuba umntwana uyakhula, ukuxilongwa kwangoko kunye nonyango olufanelekileyo kunye nenkxaso kunokunceda umntwana aphile ubomi obungcono kakhulu.
Iindlela zonyango zixhomekeke kwiimpawu ezithile kunye neengxaki umntwana anazo, kwaye zinokufuna uncedo lweengcali ezahlukeneyo kunye neengcali zonyango.
| Uncedo lwezonyango olunokufuneka | Iinkonzo zonyango ezinokuthi zifuneke |
|---|---|
|
Xa kufikwa kubude bobomi baba bantwana, i-Kabuki syndrome ngokwayo ayifinyezi ubomi babo. Nangona kunjalo, ukuba kukho iimeko ezinxulumene noko ezinzima, ezifana nesifo sentliziyo okanye iingxaki zezintso, zinokuba nefuthe elisongela ubomi. Yiyo loo nto ukujonga rhoqo unyango kubaluleke kakhulu.
Ubomi besikolo kunye nobudala
Aba bantwana banokuya esikolweni. Nangona kunjalo, bafuna isicwangciso semfundo ekhethekileyo esilungiselelwe iimfuno zabo. Basenokufuna inkxaso yotitshala wemfundo ekhethekileyo. Abanye abantwana bayakwazi ukuthatha inxaxheba kwezemidlalo.
Kunzima ukutsho ngqo ukuba ubomi babo buza kuba njani xa sele bekhulile, njengoko ubukhali beempawu buyahluka kumntu ngamnye. Abanye abantu abaphila ubomi obusempilweni bayakwazi ukuphila ngokuzimela baze batshate.
Umyalezo Wokuya Ekhaya
- I-Kabuki syndrome yimeko engaqhelekanga, ezalwa nayo ngokwemfuza. Akukho mfuneko yokuyoyika, kodwa kubalulekile ukuba uyiqaphele.
- Iimpawu zobuso ezahlukileyo, ubuthathaka bemisipha, kunye nokulibaziseka kokukhula zezona mpawu ziphambili.
- Nangona le meko ingenakunyangwa ngokupheleleyo, ukufunyanwa kwangoko kunye nokunikezelwa konyango olufanelekileyo kunye neenkonzo zonyango kunokuphucula kakhulu umgangatho wobomi bomntwana.
- Wonke umntwana wahlukile, ngoko ke sebenzisana nogqirha wakho kunye nezinye iingcali ukuze uqonde ukuba loluphi uncedo umntwana wakho aludingayo.
- Nangona aba bantwana benemingeni, banokufumana uthando, umculo, nokunye okuninzi ebomini. Eyona nto ibalulekileyo kukubanika uthando nenkxaso.
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