Ingabe ingane yakho encane iqale ukukhuluma noma ukuhamba sekwephuzile kunezinye izingane? Ingabe inenkinga yokuhlala endaweni eyodwa? Ingabe ngezinye izikhathi inyakazisa izingalo zayo ngezindlela ezingavamile, noma ayikwazi ukukubheka ngqo emehlweni? Kujwayelekile ngawe njengomzali ukuzizwa wesaba futhi ukhathazekile uma ubona izinto ezinjengalezi. Namuhla sikhuluma ngesimo sofuzo esingabangela lezi zimpawu, kodwa esingakhulunywa ngaso kakhulu emphakathini wethu. Lokhu kubizwa ngokuthi i-Fragile X Syndrome. Ake sixoxe ngakho kalula, ngendlela wonke umuntu angayiqonda.
Kalula nje, iyini i-Fragile X Syndrome?
Kalula nje, lesi yisimo sofuzo . Okusho ukuthi, akuyona into eyenzeka ngephutha lanoma ubani noma ukunganaki. Kuyinto ingane ezalwa nayo. Lesi simo singathinta ukufunda kwengane, ukuziphatha kwayo, ukubukeka kwayo, futhi ngezinye izikhathi ngisho nempilo yayo.
Into ebaluleke kakhulu okufanele uyikhumbule lapha ukuthi abafana bavame ukuthintwa kakhulu yilesi simo kunamantombazane. Sizoxoxa ngesizathu salokhu kamuva. Izingane ezinalesi simo zingase zibe nokukhubazeka kokufunda kanye nokulinganiselwa kokukhula kwengqondo. Kodwa-ke, singabasiza laba bantwana ukuba bathuthukise amakhono abo aphelele ngokwelashwa okufanele, imfundo ekhethekile, kanye nokwelashwa .
Yiziphi izimpawu ingane ezibonisa kulesi simo?
Ingane enesifo i-Fragile X ingabonisa izimpawu ezahlukahlukene. Ezinye izingane zingase zibonise lezi zimpawu kancane kakhulu, kanti ezinye zingase zithinteke kakhulu. Ake sibheke leli thebula ukuze lisisize siqonde lezi zimpawu ngokucacile.
| Uhlobo oluyisici | Izinto okufanele uzibone |
|---|---|
| Izinkinga ezihlobene nokukhula nokufunda |
|
| Izinkinga zokuziphatha nezemizwa | |
| Izici zokubukeka ngokomzimba |
Into ebalulekile ukuthi akuzona zonke izingane ezizoba nazo zonke lezi zici. Futhi ukuthi nje ingane inesinye noma ezimbili zalezi zici akusho ukuthi ine-Fragile X. Kufanele nakanjani ubone udokotela ukuze uthole ukuxilongwa okunembile.
Uyini uxhumano phakathi kwe-Fragile X, i-Autism ne-ADHD?
Leli futhi liphuzu elibaluleke kakhulu. Inani elikhulu lezingane ezine-Fragile X lingase libe nezimo ezifana ne-autism noma i-ADHD (Attention Deficit Hyperactivity Disorder).
- Cishe ama-40% ezingane ezine-Fragile X nawo angase abe ne-autism .
- Futhi abantu abangafika ku-80% bangase babe ne -ADHD noma i-ADD (isifo sokungabi namandla okugxila ngokweqile).
Uma ingane ine-Fragile X kanye ne-autism, inamathuba amaningi okuba nesifo sokuwa, izinkinga zokulala, kanye nezinkinga zokuziphatha.
Lesi sifo sivela kanjani? Ingabe sidluliselwa ngofuzo?
Yebo, lokhu kubangelwa ushintsho lwezakhi zofuzo oluzuzwa izizukulwane ngezizukulwane. Ake sikuqonde lokhu kalula.
Kukhona i-gene ebizwa ngokuthi i-`FMR1` ku-chromosome X emzimbeni wethu. Umsebenzi oyinhloko walesi gene ukukhiqiza iphrotheni ekhethekile (iphrotheni ye-FMR) esiza amangqamuzana ezinzwa ebuchosheni bethu ukuthi axhumane kahle. Le phrotheni ibalulekile ekukhuleni kobuchopho okunempilo.
Kumntwana one-Fragile X, ukuguquka kwezakhi zofuzo ze-`FMR1` kubangela ukukhiqizwa okuncane kakhulu noma okungekho nhlobo kwale phrotheni ebalulekile. Lokhu kuphazamisa intuthuko kanye nokusebenza kobuchopho.
Kungani abafana bethinteka kakhulu?
Cabanga nje, ingane yesifazane inama-chromosome amabili e-X (XX). Ngakho-ke noma ngabe kukhona iphutha ku-gene ye-`FMR1` ku-chromosome eyodwa ye-X, enye i-chromosome ye-X enempilo ivame ukuvala igebe. Ngakho-ke, izingane zesifazane zibonisa izimpawu ezimbalwa noma ezincane kakhulu.
Kodwa ingane yesilisa ine-chromosome eyodwa engu-X kanye ne-chromosome eyodwa engu-Y (XY). Ngakho-ke, uma kukhona iphutha ku-gene `FMR1` kuleyo chromosome eyodwa engu-X, ayikho enye i-chromosome engu-X yokuyibuyisela. Yingakho izimpawu zesifo zinzima kakhulu ezinganeni zesilisa.
Uma umama enalesi sakhi sofuzo esingasebenzi kahle, omunye wabantwana bakhe (owesifazane noma wesilisa) unethuba elingu-50% lokusizuza njengefa. Uma ubaba enalesi sakhi sofuzo, angasidlulisela kubantwana bakhe besifazane kuphela.
Ungasibona kanjani lesi simo?
Lesi simo singatholakala kuphela ngokuqiniseka ngokuhlolwa kofuzo. Lokhu kuhilela ukuhlolwa kwegazi okulula. Leli sampula legazi lisetshenziselwa ukuhlola ukuguquka kwezakhi zofuzo ze-`FMR1`.
Ngisho nangesikhathi sokukhulelwa, ukuhlolwa kungenziwa ukuze kutholakale ukuthi ingane inalesi simo.
- I-Amniocentesis: Ukuthatha inani elincane loketshezi lwe-amniotic esibelethweni sikamama bese ulihlola.
- Ukusampula Kwe-Chorionic Villus (CVS): Kuthathwa isampula encane yamaseli ku-placenta bese ihlolwa.
Ngaphambi kokwenza isinqumo mayelana nalezi zivivinyo, kubaluleke kakhulu ukuxoxa ngezinzuzo nezinkinga nodokotela wakho .
Yini esingayenza ukuze sisize ingane?
Ngenxa yokuthi lesi yisimo sofuzo, akukho "isibhamu somlingo" esingaselapha ngokuphelele. Kodwa kunezinto eziningi esingazenza ukuze siphathe izimpawu zengane, sizisize zifunde, futhi sivule indlela yokuphila ephumelelayo. Into ebaluleke kakhulu lapha ukungenelela kusenesikhathi (ukungenelela kusenesikhathi).
| Izindlela eziwusizo | Incazelo |
|---|---|
| Ukwelashwa |
|
| Imfundo ekhethekile | Ukusebenzisana nesikole ukuthuthukisa uhlelo lwemfundo olukhethekile oluhambisana nekhono lokufunda lengane. |
| Imithi | |
| Indawo esekelayo |
Lizoba njani ikusasa lalaba bantwana?
Lena inkinga enkulu kubazali. I-Fragile X ayisona isimo esisongela impilo. Isikhathi sokuphila somuntu onalesi simo sifana nesomuntu ophilile kahle.
Ngokusekelwa nokuqeqeshwa okufanele, abantu abaningi abanalesi simo bangaphila impilo ephumelelayo nejabulisayo. Abanye bangase badinge izinga elithile lokusekelwa baze babe badala. Kodwa iningi liyakwazi ukuya esikoleni, ukufunda izincwadi, ukufunda izinto ezintsha, ukusebenza, nokwenza izinto lodwa. Into ebaluleke kakhulu ukuqaphela amakhono engane bese uyisekela ngokufanele.
Umlayezo Wokuya Nawe Ekhaya
- I-Fragile X Syndrome akuyona iphutha lomuntu, yisimo sofuzo esizuzwa kusukela ekuzalweni.
- Izimpawu zingathinta abafana kakhulu kunamantombazane.
- Uma ubona ukubambezeleka kokukhula, ubunzima bokukhuluma, ukukhubazeka kokufunda, noma izinkinga zokuziphatha enganeni yakho, khuluma nodokotela ngakho.
- Nakuba lesi simo singelapheki ngokuphelele, izimpawu zingaphathwa kahle kakhulu ngokwelashwa nangemithi.
- Ukuxilonga lesi sifo kusenesikhathi nokuhlinzeka ingane ngokusekelwa okudingekayo kuzosiza kakhulu ekusizeni ingane ukuthi ifinyelele ikusasa eliphumelelayo.
- Uma unokungabaza ngengane yakho, into engcono kakhulu ongayenza ukuxhumana nodokotela wezingane noma nodokotela womndeni wakho ukuze uthole iseluleko.
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