Njengabazali, iphupha lethu elikhulu kukubona abantwana bethu bephilile kwaye bonwabile. Kodwa ngamanye amaxesha, abantwana banokuba neengxaki zempilo esingazilindelanga. Khawuthelekelele ukuba umntwana wakho omncinci akasabeli kakhulu kwizandi ukususela ngomhla wokuzalwa kwakhe. Okanye xa ekhula kancinci, uyaqonda ukuba unengxaki yokufumana izinto kwiindawo ezikhanyayo ebusuku nokuhamba. Kuqhelekile ukuziva uloyiko olukhulu kunye nexhala ngamaxesha anje. Namhlanje, siza kuthetha ngemeko engaqhelekanga ebangela iingxaki zokuva nokubona ngaxeshanye, kodwa kungathethwa kakhulu ngayo kuluntu lwethu. Leyo yi-Usher Syndrome.
Yintoni kanye kanye i-Usher Syndrome?
Ngamafutshane, i-Usher Syndrome yimeko ezuzwe njengelifa echaphazela kakhulu ukuva nokubona komntwana. Kwezinye iimeko, ikwachaphazela nokukwazi komzimba ukugcina ibhalansi. Oku kubangelwa lutshintsho oluthile (ukuguqulwa kwezakhi zofuzo) kwezinye iijini ezinceda ukuva nokubona kuphuhle ngelixa umntwana esesesibelekweni. Le yimeko edla ngokuba yimeko yokuzalwa, okanye iimpawu ziqala ukubonakala ebuntwaneni. Nangona kunjalo, kunqabile kakhulu, kukho abantu ababonisa iimpawu kamva ebomini.
Esi sisifo esingaqhelekanga kakhulu. Sichaphazela abantu abaphakathi kwaba-3 naba-6 kwi-100,000 kwihlabathi liphela. Nangona kungekho nyango okwangoku, zininzi iindlela zokulawula iimpawu nokunceda umntwana aphile ubomi obulungileyo.
Ziziphi iintlobo eziphambili ze-Usher Syndrome?
Kuye kwachongwa utshintsho oluninzi lwemfuza olubangela esi sifo. Iintlobo zesifo ziyahluka ngokuxhomekeke kwindlela ezi mfuza ezidityaniswe ngayo. Kodwa zonke ezi ntlobo zichaphazela ukuva, ukubona, kunye nokulinganisela. Umahluko ophambili ukwixesha elithathayo ukuqala kweempawu kunye nokuba zinzima kangakanani. Makhe sijonge ezi ntlobo zintathu ziphambili.
Ndenze le theyibhile ukuze kube lula ukuqonda olu lwazi.
| Uhlobo | Iingxaki zokuva | Iingxaki zokubona | Iingxaki zokulinganisela |
|---|---|---|---|
| Uhlobo 1 | Azinzima kakhulu ukuva xa zizalwa (zisenokuba zizithulu). | Kuqala ebuntwaneni. Okokuqala, ukubona ebusuku kuyancipha. Kuba mandundu xa umntu ekhula. | Ibakho xa umntwana ezalwa. Oku kubangela ukulibaziseka kokuqala ukuhamba. |
| Uhlobo 2 | Umntwana ongeva kakuhle okanye ongeva kakuhle xa ezalwa, kodwa akangeva kakuhle. | Idla ngokuqala xa umntu efikisa aze abe mandundu xa ekhula. | Iingxaki zokulinganisela aziqhelekanga ukuba zenzeke. |
| Uhlobo 3 | Ukuva kuyinto eqhelekileyo xa umntwana ezalwa. Ukuva kuqala ukuncipha xa umntwana ekhula. | Ukubona kuyinto eqhelekileyo xa umntu ezalwa. Ukubona kuqala ukuncipha xa umntu ekhula. | Malunga nesiqingatha sabantu abanale hlobo banokuba neengxaki zokulinganisela. |
Zeziphi iimpawu eziphambili ezibonakala kule meko?
Nangona iimpawu zahlukile ngokuxhomekeke kuhlobo lwe-Usher Syndrome, kukho iimpawu ezininzi ezifanayo.
- Ukulahlekelwa kukuva: Abanye abantwana bazalwa bengeva ngokupheleleyo. Abanye balahlekelwa kukuva okuphakathi. Abanye abantwana balahlekelwa kukuva kancinci kancinci njengoko bekhula.
- Ukulahlekelwa kukubona: Oku kubangelwa yi -retinitis pigmentosa (RP), isifo se-retina yeliso. Oku kubangelwa kukutshatyalaliswa kancinci kancinci kweeseli ezibona ukukhanya (iinduku kunye neekhowuni) emehlweni.
- Uphawu lokuqala: Ukubona okufipheleyo ebusuku okanye ekukhanyeni okufipheleyo ( ubumfama basebusuku ). Umzekelo, umntwana unokuba nobunzima bokuhamba ngaphakathi endlwini okanye ukufumana ithoyi xa ukukhanya kuncinci ngokuhlwa.
- Kamva: Njengoko isifo siqhubeka, umbono ongaphandle uyalahleka. Oku kuthetha ukuba ungabona ngqo phambili, kodwa ungaboni emacaleni. Oku kukwabizwa ngokuba 'yi-tunnel vision' . Kuvakala ngathi ujonga ngetyhubhu ende. Ekugqibeleni, le meko inokuqhubela phambili ekubeni yimfama ngokupheleleyo.
- Imiba yokulinganisela: Abantwana abanesifo sohlobo loku-1, ingakumbi, banengxaki yokugcina ulungelelwano. Ngenxa yoko, baqala ukuhlala, ukuma, nokuhamba emva kwexesha kunabanye abantwana.
Yintoni ebangela i-Usher Syndrome?
Le yimeko ebangelwa lufuzo ngokupheleleyo. Masiyiqonde le nto ngokulula.
Ukuze umntwana abe nesi sifo, umntwana kufuneka afumane i-gene enesiphene yesifo kumama nakutata . Ngokwezonyango, oku kubizwa ngokuba yi-autosomal recessive inheritance .
Khawucinge ukuba umama notata bobabini banale jini inesiphako, kodwa abanazo iimpawu. Sibabiza ngokuba 'ngabathwali'. Nantsi into eyenzekayo xa abazali ababini benomntwana:
- Kukho ithuba elingama-25% (inye kwabane) lokuba umntwana afumane esi sifo (ukuba bobabini abazali bazuza ilifa le-gene enesiphene).
- Kukho ithuba elingama-50% (amabini kwabane) lokuba umntwana naye abe 'ngumthwali' ongenazimpawu (ukuba omnye umzali uzuze ilifa lejini enesiphene kwaye omnye azuze ilifa lejini ephilileyo).
- Umntwana unethuba eliyi-25% (umnye kwabane) lokuba sempilweni ngokupheleleyo, ngaphandle kwesi sifo okanye i-gene enesiphene.
Olu tshintsho lwemfuza lubangela ukuba iiseli zemithambo-luvo kwi-cochlea, ezithwala amaza esandi ziye engqondweni, zingasebenzi kakuhle, nto leyo ebangela ukulahleka kokuva. Kwakhona, utshintsho kwimfuza oluvelisa iiseli ezibona ukukhanya kwi-retina yeliso lubangela i-retinitis pigmentosa, ebangela ukulahleka kokubona.
Indlela yokuxilonga esi sifo?
Inkqubo yokuxilonga isifo ingahluka ngokuxhomekeke kwiimpawu zomntwana kunye nobudala bakhe.
Ngokwesiqhelo, kuzo zonke izibhedlele eSri Lanka, uhlolo lokuva olusandul’ ukuzalwa lwenziwa xa umntwana ezalwa. Ukuba ugqirha ukrokrela ukuba umntwana unengxaki yokuva, uya kuthunyelwa kwezinye iimvavanyo.
Ukuba ucinga ukuba umntwana wakho unengxaki yokuva okanye yokubona, kufuneka ubone ugqirha wabantwana ngokukhawuleza. Uza kumhlola umntwana aze amthumele kwiingcali ukuba kuyimfuneko.
- Uvavanyo lokuva: Ingcali yendlebe, impumlo, nomphimbo (ingcali ye-ENT) kunye nengcali ye-audiologist benza uvavanyo olwahlukeneyo lokuva ukuze bafumane ukuba umntwana unokuva kakuhle kangakanani na kwaye zeziphi iintlobo zezandi angenakuziva.
- Uvavanyo lokubona: Ingcali yamehlo iza kuhlola amehlo omntwana ukuze ijonge iimpawu ze-retinitis pigmentosa kwi-retina. Baza kwenza novavanyo lokulinganisa umbono ongaphandle.
- Uvavanyo lwe-genetic:Ukuba ukrokrela ukuba une-Usher Syndrome ngokusekelwe kwiimpawu zakho, eyona ndlela ilungileyo yokuqinisekisa ukuba unesifo kukwenza uvavanyo lwemfuza. Oku kunokunceda ekuchongeni utshintsho oluthile lwemfuza olubangela esi sifo.
Ziziphi iindlela zonyango kunye neendlela zokulawula oku?
Ngelishwa, akukho nyango lwe-Usher Syndrome. Nangona kunjalo, zininzi iindlela zokulawula iimpawu kunye nokuphucula umgangatho wobomi bomntwana. Izicwangciso zonyango ziyahluka ukusuka kumntwana ukuya komnye, kuxhomekeke kwimeko yakhe.
- Ii-Cochlear implants: Oku kunokuba luncedo kakhulu kubantwana abazalwa benengxaki yokuva kakhulu. Esi sisixhobo se-elektroniki esifakelwa endlebeni ngotyando. Siqondisa amaza esandi ngqo kwi-auditory nerve, nto leyo evumela umntwana ukuba afumane ihlabathi lesandi.
- Izixhobo zokuva: Izixhobo zokuva zingasetyenziselwa abantwana abanengxaki yokuva ephakathi. Ezi zibaluleke kakhulu kubantwana abanesifo sohlobo lwesibini okanye lwesithathu, abadla ngokulahlekelwa kukuva njengoko bekhula.
- Izixhobo zokunceda ukubona: Kukho izixhobo ezahlukeneyo ezinokunceda ekulawuleni iingxaki zokubona. Umzekelo, iiglasi ezineelensi ezikhethekileyo ezihluza ukukhanya, iiglasi ezikhulisayo, njl.
- Iinkonzo zokungenelela kwangethuba: Oku kubaluleke kakhulu . Ukuba imeko ifunyenwe kwangethuba ebomini bomntwana, iinkonzo ezikhethekileyo azidingayo zingaqaliswa kwangethuba.
- Unyango lokuthetha
- Ukufundisa ulwimi lwezandla
- Ukufundisa iBraille
- Iindlela zemfundo ekhethekileyo
- Imithambo ye-physiotherapy ephucula ukulinganisela komzimba
Konke oku kunika umntwana amandla amakhulu okuphuhlisa izakhono zakhe ngokupheleleyo nokujongana noluntu ngempumelelo.
Imibuzo ebalulekileyo yokubuza ugqirha wakho
Kuqhelekile ukuba nemibuzo emininzi xa ufunda ngesifo esingaqhelekanga kangaka. Ungalibali ukubuza le mibuzo xa ubona ugqirha wakho.
- Luhlobo luni lwe-Usher Syndrome umntwana wam analo?
- Zeziphi iindlela zonyango kunye neendlela zolawulo ozicebisayo?
- Ngaba umntwana wam uza kulahlekelwa yimbono yakhe ngokupheleleyo ekuhambeni kwexesha?
- Zeziphi iingcali, iingcali zonyango, okanye imibutho ekhoyo enokunceda umntwana wam kule meko?
- Ngaba nathi (abazali) singavavanya ukuze sibone ukuba sinazo na iijini ezinxulumene noku?
Khumbula, kubaluleke kakhulu ukuxoxa ngazo zonke iingxaki zakho nogqirha wakho uze uzisombulule, kunokuba woyike kwaye uxhalabe.
Njengomzali, ungaziva ngathi uhamba wedwa kolu hambo. Kodwa khumbula, awuwedwa. Ungafumana inkxaso koogqirha bomntwana wakho, iingcali zonyango, ootitshala, kunye nabanye abazali abaye bahlangabezana nale meko. Ngolawulo olufanelekileyo kunye nokhathalelo olunothando, umntwana one-Usher Syndrome unokuphila ubomi obonwabisayo nobunempumelelo njengayo nayiphi na enye.
Umyalezo Wokuya Ekhaya
- I-Usher Syndrome sisifo esingaqhelekanga esifunyanwa ngabazali esichaphazela ukuva, ukubona, kwaye ngamanye amaxesha ukulinganisela.
- Kukho iintlobo ezintathu eziphambili zesi sifo (Uhlobo 1, 2, kunye no-3), kwaye ixesha lokuqalisa kweempawu kunye nobunzima bazo ziyahluka ngokuxhomekeke kuhlobo.
- Kubaluleke kakhulu ukufuna iingcebiso zonyango ngokukhawuleza ukuba ubona naluphi na utshintsho kwindlela umntwana wakho aziva ngayo okanye abona ngayo. Ukufunyaniswa kwesi sifo kwangethuba kunceda kakhulu ekulawuleni.
- Nangona oku kungenakunyangwa ngokupheleleyo, izixhobo zokufakelwa i-cochlear, izixhobo zokuncedisa ukuva, izixhobo zokunceda ukubona, kunye neenkonzo ezahlukeneyo zonyango zinokuwuphucula kakhulu umgangatho wobomi bomntwana.
- Ngokuhlala unxibelelana rhoqo neqela lakho lezonyango kwaye unike umntwana wakho inkxaso nothando aludingayo phantsi kolwalathiso lwabo, ungamvulela indlela yokuba aphile ubomi obunempumelelo.
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