Njengomama okanye utata, iphupha lethu elikhulu kukuba nomntwana ophilileyo. Kodwa ngamanye amaxesha abantwana bethu banokuza kweli hlabathi beneengxaki zempilo ezingaqhelekanga. Ngaba umntwana wakho ubonakala emncinci kakhulu kunobudala bakhe? Ngaba ubuso bakhe bunenkangeleko eyahlukileyo nekhethekileyo kunabanye abantwana? Kwaye ngaba ungumntu othanda ukunxibelelana nabantu, oncumayo kwaye othetha nabo bonke abambonayo? Ngamanye amaxesha ezi zinokuba ziimpawu zesifo esingaqhelekanga semfuza esibizwa ngokuba yi "Williams Syndrome". Ungakhathazeki, siza kuthetha ngale nto ngokucacileyo nangokulula.
Ngamafutshane, yintoni iWilliams Syndrome?
I-Williams syndrome, ngamanye amaxesha ebizwa ngokuba yi-Williams-Beuren syndrome, yimeko engaqhelekanga yemfuza. Ngamafutshane, ii-chromosomes, ezingaphakathi kweeseli zemizimba yethu, zimisela yonke into ukusuka kubude bethu ukuya kumbala wethu kunye nenkangeleko yethu. Zifana nencwadi yemiyalelo eyakha imizimba yethu. Umntwana one-Williams syndrome uneqhekeza elincinci le-chromosome 7 elingekhoyo. Kufana namaphepha ambalwa angekhoyo kwincwadi yemiyalelo. Eli qhekeza le-gene elingekhoyo libangela iimpawu ezinxulumene nale meko.
Le meko inokuchaphazela ukukhula komntwana, amandla okufunda, ukusebenza kwentliziyo, kunye nenkangeleko. Inokubangela nezinye iingxaki zehomoni, ezinje ngamanqanaba aphezulu e-calcium egazini, i-thyroid engasebenzi kakuhle, kunye nokufikisa kwasekuqaleni.
Ingaba le meko yenzeka njani? Ngubani oyifumanayo ?
Kwiimeko ezininzi, oku akuyonto izuzwe njengelifa kumama okanye kutata. Lutshintsho oluzenzekelayo oluvela ngexesha lokukhulelwa, olubangela ukulahleka kwenxalenye ye-chromosome yesi-7. Ke ngoko, umama okanye utata akanakubekwa tyala ngale nto. Oku akuyonto nabani na anokuyithintela.
Nangona kunjalo, ukuba umntu onesifo sikaWilliams unengane, kukho amathuba angama-50% okuba umntwana azuze esi sifo njengelifa.
Le yimeko engaqhelekanga kakhulu. Ngokwezibalo kumazwe afana neMelika, ngumntwana omnye kuphela kwabayi-10,000 ozelweyo onayo le meko. Kukho nabantwana abanale meko eSri Lanka, kodwa ayiqhelekanga kakhulu.
Le meko imchaphazela njani umntwana wam?
Ukukhulisa umntwana oneWilliams Syndrome kunokuba ngumceli mngeni, kodwa ngokuchongwa kwangethuba kunye nonyango olufunekayo kunye nenkxaso, nabo banokufikelela kwinqanaba labo elipheleleyo.
Khawucinge nje, kuba aba bantwana benamajoyinti akhululekileyo, baqala ukuhlala nokuhamba emva kwexesha kunabanye abantwana. Basenokuba neziphene ezithile zokuzalwa ezintliziyweni zabo okanye kwimithambo yegazi enxulumene nentliziyo. Ngamanye amaxesha oku kusenokufuna utyando. Ke ngoko, kufuneka uvavanyo lwezonyango rhoqo.
Enye yezona zinto zimangalisayo ngaba bantwana kukuba banezakhono eziphezulu zokuthetha nokunxibelelana. Bathetha kamnandi kwaye banomdla kakhulu ekunxulumaneni nabanye abantu. Kodwa ngenxa yesi siphiwo, ngamanye amaxesha siyabukhumbula ubuthathaka babo bokufunda, umzekelo, ubunzima bokufunda amanani noonobumba. Banobunzima obuncinci bokuqonda umahluko phakathi kwento enye nenye (ukuqiqa ngesithuba).
Kwakhona, khumbula, aba bantwana banenkumbulo entle yexesha elide. Kodwa banokuba neemeko ezifana ne-ADHD (Attention-Deficit/Hyperactivity Disorder), apho banobunzima bokuhlala begxile.
Ziziphi iimpawu eziqhelekileyo?
Ayingabo bonke abantwana abaneWilliams syndrome abafanayo. Abanye basenokuba neempawu ezininzi, abanye banokuba nezimbalwa. Masizihlalutye ezi mpawu.
| Udidi lweempawu | Izinto onokuzibona |
|---|---|
| Imbonakalo yomzimba |
|
| Ukukhula kunye nokuziphatha | |
| Ezinye iingxaki zempilo |
Izinto ekufuneka uzilumkele ngakumbi: Isifo sentliziyo
Eyona ngxaki inkulu ibonwayo kule meko sisifo sentliziyo. Ngokukodwa, ukucutheka (i-stenosis) kwemithambo yegazi ephambili edibene nentliziyo kunye nemithambo ethwala igazi ukuya emiphungeni kunokubonwa. Oku kunokukhokelela kuxinzelelo lwegazi oluphezulu, ukubetha kwentliziyo okungahambelaniyo (i-arrhythmia), kwaye ngamanye amaxesha nokungasebenzi kakuhle kwentliziyo. Rhoqo, ukurhanelwa kokuqala kokuba umntwana une-Williams syndrome kungenxa yale ngxaki yentliziyo.
Oogqirha bayixilonga njani le meko?
Esi sifo sidla ngokufunyaniswa ebuntwaneni okanye ebuntwaneni. Ukuba ugqirha wakho unesikrokro malunga nokubonakala komntwana wakho kunye neempawu zakhe, uza kuqala amhlole umntwana ngononophelo.
Emva koko, kwenziwa uvavanyo olukhethekileyo lwemfuza ukuqinisekisa le meko. Oku kufana novavanyo lwegazi oluqhelekileyo. Oku kunokujonga ngokuchanekileyo ukuba loo nxalenye ye-chromosome 7 endikhankanyileyo ngaphambili ayikho na.
Ukongeza, kunokwenziwa ezinye iimvavanyo ezininzi ukuqinisekisa ezinye iimpawu zomntwana:
- Ukujonga intliziyo: I-ECG okanye i-Echocardiogram (i-ultrasound scan yentliziyo)
- Ukulinganisa uxinzelelo lwegazi: Jonga ukuba uxinzelelo lwakho lwegazi luphezulu ngokungaqhelekanga na.
- Uvavanyo lwegazi nomchamo: Jonga ukusebenza kwezintso kunye namanqanaba e-calcium egazini.
Inyangwa njani? Ngaba le nto inganyangeka?
I-Williams Syndrome ayisosifo esinokunyangeka ngokupheleleyo. Kuba sibangelwa kukuguquka kwezakhi zofuzo. Nangona kunjalo, iimpawu kunye neengxaki ezibangelwa yiyo zinokulawulwa kakuhle. Oko kuthetha ukuba singenza konke okusemandleni ethu ukunceda umntwana aphile ubomi obuqhelekileyo nobonwabisayo.
Isicwangciso sonyango siya kwahluka kumntwana ngamnye, kuxhomekeke kwiimpawu zomntwana.
- Ukutyelela ugqirha wentliziyo: Ukuba kukho ingxaki yentliziyo, nguye oza kugqiba ukuba loluphi unyango olufunekayo (mhlawumbi amayeza okanye utyando).
- Iinkqubo zokungenelela kwangethuba:Kubaluleke kakhulu ukuthumela umntwana kwizinto ezifana nonyango lokuthetha kunye ne-physiotherapy ukuthintela ukulibaziseka kokukhula.
- Imfundo Ekhethekileyo: Ukuba kukho iingxaki zokufunda, umntwana udinga inkqubo yemfundo elungiselelwe iimfuno zakhe.
- Ezinye iingcali: Ukuba amanqanaba e-calcium egazini lakho aphezulu, kunokufuneka ubone ingcali ye-nephrologist okanye ingcali yesondlo. Kusenokufuneka ufune uncedo lweengcali zeengxaki zamazinyo, amehlo kunye neendlebe.
Yintoni ekufuneka ndiyazi njengomzali?
Kuqhelekile ukuba uzive ulusizi kwaye usoyika xa uxilongwa ngolu hlobo. Kodwa eyona nto ibalulekileyo kukunika umntwana wakho uthando, inkathalo kunye nenkxaso engcono kakhulu.
- Bona ugqirha wakho ngexesha: Kubalulekile ukujonga impilo yomntwana wakho rhoqo, ingakumbi xa kukho iingxaki ezinxulumene nentliziyo.
- Yiba nomonde: Umntwana wakho ufunda yonke into ngesantya sakhe. Sebenza naye ngomonde nangothando. Xabisa nangempumelelo yakhe encinci.
- Awuwedwa: Thetha nabanye abazali abanabantwana abanjalo. Amava abo aya kuba ngumthombo omkhulu wamandla kuwe. Kwakhona, thetha ngokukhululekileyo nogqirha wakho malunga nemibuzo kunye nezinto ezikuxhalabisayo.
Uninzi lwabantu abane-Williams syndrome baphila ubomi obuqhelekileyo. Nangona kunjalo, iingxaki ezinkulu zentliziyo ngamanye amaxesha zinokunciphisa ubomi babo. Basenokufuna inkxaso ethile njengoko bekhula.
Ufanele uye nini kugqirha?
Ukuba umntwana wakho unezi mpawu zilandelayo, kubaluleke kakhulu ukubona ugqirha wabantwana ukuze akunike iingcebiso.
| Amathuba | Inkcazo |
|---|---|
| Ukulibaziseka kophuhliso | Ukuba umntwana ulibazisekile ekuphakamiseni intloko yakhe, ekuqengqelekeni, ekuhlaleni, ekuhambeni, okanye ekuthetheni eneminyaka efanelekileyo. |
| Usulelo oluqhelekileyo | Ingakumbi ukuba izifo zendlebe ziyenzeka rhoqo okanye ukuba umntwana ubonakala enengxaki yokuva. |
| Iingxaki zokutya | Ukuba umntwana wakho unengxaki yokusela ubisi okanye yokutya. |
Ufanele uye nini kwiYunithi yoNyango oluNgxamisekileyo (i-ETU)?
Ukuba umntwana ubonakalisa naziphi na kwezi mpawu zilandelayo zesifo sentliziyo, mthathe ngoko nangoko aye kwiSebe leNgxamiseko (ETU) lesibhedlele esikufutshane.
- Ukutshintsha kombala wesikhumba okanye imilebe okuluhlaza okwesibhakabhaka/omfusa .
- Ukuphefumla ngokukhawuleza okanye ubunzima bokuphefumla.
- Ubunzima obukhulu bokutya.
- Isantya sentliziyo sikhawuleza kakhulu.
- Ukudumba komzimba, ingakumbi ubuso kunye namalungu omzimba .
Le meko ayisuleli, kodwa uthando nobuhlobo baba bantwana "luyasulela ngokwenene." Bazisa uvuyo kubo bonke abangqongileyo. Ukujongana nokuxilongwa okutsha kunokuba nzima, ngoko soloko unika umntwana wakho inkxaso yakho.
Umyalezo Wokuya Ekhaya
- I-Williams syndrome ayibangelwanga yimpazamo yabazali. Lutshintsho lwemfuza olwenzeka ngengozi ekukhulelweni.
- Aba bantwana banenkangeleko eyahlukileyo, enothando kwaye banobuntu obuhle kakhulu, obunobuhlobo.
- Eyona ngxaki yempilo ixhalabisayo ziimeko ezinxulumene nentliziyo kunye nemithambo yegazi. Ngoko ke, ukuvavanywa rhoqo ngugqirha kubaluleke kakhulu.
- Nangona benengxaki yokufunda, banokuba nezakhono ezilungileyo zokuthetha kunye nenkumbulo yexesha elide.
- Ukuxilongwa kwangoko kunye nokudluliselwa kwiinkqubo zonyango ezifunekayo kunye nonyango kunokunceda umntwana aphile ubomi obuhle kakhulu.
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