Ngaba umntwana wakho omncinci uyakuthanda ukuba nobuhlobo? Ngaba ungumntu onothando kakhulu oncumayo aze athethe nomntu wonke ambonayo? Kwangaxeshanye, ngaba ngamanye amaxesha kukho ukulibaziseka okuncinci kokukhula okanye imingeni yokufunda? Ngamanye amaxesha, ngasemva kwezi mpawu, kunokubakho imeko engaqhelekanga yemfuza ebizwa ngokuba yiWilliams Syndrome. Musa ukoyika xa usiva eli gama. Le yinto ekufuneka sithethe ngayo kwaye siyiqonde. Namhlanje, siza kuthetha ngayo yonke into ngendlela elula onokuyiqonda.
Ngamafutshane, yintoni iWilliams Syndrome?
I-Williams syndrome, ngamanye amaxesha ebizwa ngokuba yi-Williams-Beuren syndrome, yimeko engaqhelekanga yemfuza ebakho xa umntwana ezalwa. Ichaphazela uphuhliso lwemithambo-luvo. Abantwana abanale meko banokuba nenkangeleko eyahlukileyo, ukulibaziseka kokukhula, ukukhubazeka kokufunda, kunye nokuphazamiseka kwentliziyo.
Khawuthelekelele ukuba umzimba wethu wenziwe ngencwadi yemiyalelo enkulu. Le ncwadi yemiyalelo ineejini. Ezi jini zifumaneka kwiikromosomu. Sineeperi ezingama-23 zeekromosomu, ezingama-46 zizonke . Umntu one-Williams syndrome uneqhekeza elincinci elingekho kwi-chromosome 7. Kufana nephepha elingekhoyo kuloo ncwadi yemiyalelo. Ngenxa yale phepha lingekhoyo, eminye imisebenzi yomzimba kunye nophuhliso zenzeka ngokwahlukileyo. Yiloo nto siyibiza ngokuba yi-Williams syndrome.
Into ebalulekileyo kukuba, le asiyonto idla ngokuzuzwa ngabazali ukuya ebantwaneni. Olu lutshintsho oluzenzekelayo kwimfuza. Ngoko ke ungazibeki tyala ngale nto.
Le meko ingaba nayiphi imiphumo emntwaneni?
Asingomntwana wonke onesi sifo ofanayo. Iimpawu zingahluka kumntu nomntu. Kodwa kukho iimpawu eziqhelekileyo. Masizihlalutye.
Iimpawu zomzimba kunye nenkangeleko
Aba bantwana banokuba nenkangeleko entle kakhulu neyodwa.
| Uphawu | Inkcazo |
|---|---|
| Ubuso | Izidlele ezipheleleyo, umlomo obanzi, imilebe evelele, impumlo encinci ejonge phezulu, isilevu esincinci. |
| Amehlo | I-skin fold (ii-epicanthal folds) ibonakala kwikona engaphakathi yeliso. |
| Amazinyo | Amazinyo amancinci, izithuba phakathi kwamazinyo, amazinyo angekhoyo, okanye i-enamel ebuthathaka. |
| Ubude | Abantu abaninzi bafutshane kunomlinganiselo wobude. Ukukhula kunokucotha ngexesha lobuntwana. |
Ukukhula kunye nokuziphatha
Aba bantwana bathatha ixesha ukufikelela kwimigangatho ethile yophuhliso, kodwa banazo nezakhono ezikhethekileyo.
- Ukuthetha: Basenokuba baqale kade kancinci ukuthetha, kodwa xa sele bekwazi, banezakhono ezilungileyo zolwimi . Banobuchule kakhulu ekuthetheni kakuhle nangokuchaza.
- Intshukumo: Ngenxa yemisipha ephantsi (hypotonia), kuthatha ixesha elide kunabanye abantwana ukufunda izinto ezifana nokuhlala phantsi nokuhamba.
- Ukufunda: Basenokuba nobunzima bokufunda amanani, oonobumba, kunye nokuqonda indawo (phezulu, ezantsi, kufutshane, kude). Kodwa banenkumbulo entle kakhulu .
- Ukunxibelelana nabantu: Olu lolona phawu lubalaseleyo lwaba bantwana. Banobuhlobo kakhulu, banothando, kwaye banemfesane. Bakufumanisa kunzima ukubona abantu abangabaziyo, ngoko ke bakhawuleza benze ubuhlobo nabani na. Ngamanye amaxesha banokuba nexhala okanye uloyiko olugqithisileyo lwezinto ezithile (ii-phobias).
Ezinye iingxaki zempilo
Le meko ingakhokelela nakwezinye iingxaki zempilo. Kubalulekile ukuzazi ezi.
- Isifo sentliziyo: Le yeyona nto ibalulekileyo ekufuneka uyilumkele . Ukuxinana (stenosis) kwemithambo yegazi emikhulu edibene nentliziyo kuqhelekile. Oku kunokukhokelela kwiimeko ezifana noxinzelelo lwegazi oluphezulu kunye nokubetha kwentliziyo okungahambelaniyo (arrhythmia).
- Amanqanaba eCalcium: Amanqanaba eCalcium egazini nasemchameni anokunyuka.
- Iingxaki zehomoni: Kukho umngcipheko we-hypothyroidism, ukufikisa kwasekuqaleni, kunye nesifo seswekile xa umntu emdala.
- Usulelo lwendlebe: Usulelo lwendlebe oluhlala lukho lunokubangela ukulahleka kokuva.
- Okunye: I-Scoliosis, ubunzima bokutya ngexesha lobuntwana, kunye neengxaki zokubona (ukubona kude) nazo zinokubonakala.
Ugqirha uyixilonga njani le nto?
Ugqirha wakho angaqwalasela le meko ukuba ukrokrela ukuba umntwana wakho unengxaki yokukhula okanye uxhalabile ngenkangeleko yakhe. Eyona ndlela iphambili yokuqinisekisa ukuba uxilongiwe kukwenza uvavanyo lwemfuza . Oku kufana novavanyo lwegazi oluqhelekileyo. Lunokujonga i-chromosome 7 engekhoyo.
Ukongeza, kunokwenziwa ezinye iimvavanyo ezininzi ukuqinisekisa ezinye iimpawu:
- Uvavanyo lwentliziyo: Kwenziwa i-ECG okanye i-heart scan (Echocardiogram) ukujonga iingxaki zentliziyo kunye nemithambo yegazi.
- Ukulinganisa uxinzelelo lwegazi: Kubalulekile ukujonga uxinzelelo lwegazi lomntwana wakho rhoqo.
- Uvavanyo lwegazi nomchamo: Olu vavanyo lwenziwa ukujonga amanqanaba e-calcium kunye nokusebenza kwezintso.
Iphathwa kwaye ilawulwa njani?
I-Williams syndrome ayinakunyangwa ngokupheleleyo kuba yimeko yemfuza. Nangona kunjalo, iimpawu kunye neengxaki ezinxulumene nayo zinokulawulwa kakuhle kwaye umntwana angaphila ubomi obuqhelekileyo nobonwabisayo.
Isicwangciso sonyango siyahluka kumntwana ngamnye kwaye sifuna uncedo lweengcali ezahlukeneyo.
1. Ingcali yentliziyo: Kubalulekile ukujonga intliziyo yomntwana rhoqo. Ukuba kukho ingxaki, unyango olufunekayo (amayeza okanye utyando) luya kunikwa.
2. Ukungenelela Kwangethuba: Kukho iindlela ezahlukeneyo zonyango zokunceda uphuhliso nokufunda komntwana. Unyango lokuthetha, Unyango lomsebenzi, kunye nonyango lwe-physiotherapy zezona ziphambili.
3. Imfundo Ekhethekileyo: Iindlela zemfundo ezikhethekileyo zingafuneka ukuze koyiswe imingeni yokufunda enokuvela esikolweni.
4. Ezinye iingcali: Kubalulekile ukubona oogqirha abaziingcali kwezi ndawo ukuze balawule amanqanaba e-calcium, banyange iingxaki zehomoni, kwaye bajonge impilo yamazinyo namehlo akho.
Ixesha lokubona ugqirha nexesha lokuya kwi-ETU
Kubaluleke kakhulu ukukhathalela impilo yomntwana wakho. Musa ukulibazisa ukufuna ingcebiso kagqirha kwezi meko zilandelayo.
| Amathuba | Kwenziwe ntoni |
|---|---|
| Bona ugqirha wakho... | |
| Ukuba amanyathelo ophuhliso ayalibaziseka (umz., ukuhamba emva kwexesha okanye ukuthetha). | Thetha nogqirha wakho malunga nokukhula komntwana wakho. |
| Ukuba uneengxaki zendlebe ezihlala zikho okanye unengxaki yokuva. | Kucetyiswa ukuba ubonane nengcali yendlebe, impumlo nomqala. |
| Ukuba unengxaki yokutya. | Funa ingcebiso kagqirha malunga nobunzima bokutya kunye nokuginya. |
| Yiya kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele ngoko nangoko... | |
| Ukuba ubonisa iimpawu zesifo sentliziyo. |
|
Njengomzali, uthando lwakho, inkxaso yakho, kunye nomonde wakho zezona zinto zinamandla amakhulu umntwana wakho anokumnika zona. Uthando nobuntu baba bantwana bubenza bathandwe ngumntu wonke.
Umyalezo Wokuya Ekhaya
- I-Williams syndrome yimeko engaqhelekanga yemfuza ebangelwa kukulahleka kwenxalenye ye-chromosome 7. Oku akubangelwanga yimpazamo yabazali.
- Aba bantwana banokuba nobuhlobo kakhulu nabantu, bathande abanye, kwaye babe nezakhono ezilungileyo zolwimi.
- Eyona ngxaki ibalulekileyo ziingxaki ezinxulumene nentliziyo, ngoko ke ukujonga rhoqo ugqirha wentliziyo kubaluleke kakhulu.
- Nangona le meko ingenakunyangwa, iimpawu zinokulawulwa kwaye umntwana angaphila ubomi obulungileyo ngonyango olufunekayo kunye nenkxaso.
- Ukuba unenkxalabo ngomntwana wakho, thetha nogqirha wakho ngokukhululekileyo ngaloo nto.
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