Mwana wenyu mudiki ane shanduko dzechiso dzakadai here? Ngatitaurei nezveTreacher Collins Syndrome!

Unoziva, dzimwe nguva vana vedu vadiki vanouya munyika ino vaine shanduko diki pazviso zvavo, nzeve, nemaziso pavanozvarwa. Zvakajairika kuti isu sevabereki tinzwe kutya uye kunetseka zvikuru patinoona izvi. Nhasi tichataura nezvechirwere chisingawanzoitiki, asi chakakosha zvikuru chatinofanira kuziva. Chinonzi Treacher Collins Syndrome . Zita iri rinogona kunzwika serisinganzwisisike kana ukarinzwa, asi ngatirinzwisise zviri nyore.

Chii chinonzi Treacher Collins Syndrome?

Zvichitaurwa zviri nyore, chirwere cheTreacher Collins chirwere chisingawanzoitiki, chinokonzerwa nemajini. Chinokonzera shanduko muhukuru, chimiro, uye nzvimbo yenzeve dzemwana wako, maziso, mapfupa ematama, uye shaya. Shanduko idzi dzinogona kuita kuti zviomere mwana wako kuyamwisa, kufema zviri nyore, kana kunzwa zvakajeka. Chinonziwo mandibulofacial dysostosis . Zita iroro rinovhiringidza zvishoma, handiti? Saka ngatishandisei chirwere cheTreacher Collins.

Zviratidzo zvemwana wako zvechirwere ichi zvinogona kubva pazvishoma, zvisinganyatsooneki, kusvika pazvinonyanya kuoma . Vana vazhinji vane chirwere cheTreacher Collins vanovhiyiwa kuti vagadzirise matambudziko echiso, akadai sekurwadziwa kwemuromo. Vamwe vana vangadawo kurapwa nekuda kwekurasikirwa nekunzwa.

Asi musazvidya mwoyo . Kana mukatora mishonga yakakodzera uye mukatarisirwa nguva dzose nachiremba, vana ava vanogona kurarama hupenyu hwakazara uye hune hutano . Chinhu chakakosha ndechekuona izvi nekukurumidza uye kutanga kurapwa (kupindira nekukurumidza) . Zvikasadaro, mwana anogona kuva nematambudziko anoda kurapwa kwehupenyu hwake hwese.

Chirwere ichi chinokanganisa mwana mumwe chete pavana 50,000 pasi rose, zvichireva kuti hachiwanzoitiki.

Ndezvipi zviratidzo zveTreacher Collins Syndrome?

Vana vane chirwere cheTreacher Collins vane zvimwe zvinhu zvakasiyana-siyana pachiso. Izvi zvinosanganisira:

• Maziso anoita seakarerekera pasi: Zvinoita kuti maziso aratidzike seanosuruvarisa.
• Mafupa ematama madiki uye akati sandara: Matama acho haaratidzike seakanyanya kuoneka.
• Shaya diki yepazasi: Vanachiremba vanodanawo izvi kuti "micrognathia".
• Nzeve dzichiva diki kana kuchinja chimiro: Dzimwe nguva nzvimbo yenzeve inogonawo kuchinja.
• Kabundu kadiki kakaita sekachekwa paziso remaziso: Izvi zvinonzi eyelid coloboma .

Mwana anogona kuva nehumwe kana huzhinji hwehunhu uhwu. Haasi ese hunhu uhwu hunowanikwa nenzira imwechete mumwana wese.

Sei Treacher Collins Syndrome ichiitika?

Sekureva kwevaongorori, chikonzero chikuru cheizvi ndechekutiKuchinja kwemajini. Dambudziko iri rinokonzerwa nekuchinja kwezvinhu zvidiki zvinonzi majini mumuviri wedu.

• Dzimwe nguva, kureva kuti, muinenge hafu yevana , kana mumwe munhu mumhuri (amai, baba, kana hama yepedyo) aine chirwere ichi, mwana anogonawo kuchibata.
• Asi dzimwe nguva zvinogona kuitika nguva nenguva, pasina nhoroondo yemhuri . Kureva kuti, zvinogona kuitika zvisingatarisirwi.

Ndezvipi zvinetso zvinogona kuitika nekuda kwechirwere ichi?

Vana vane chirwere cheTreacher Collins vanogona kuva nematambudziko akadai se:

• Kurasikirwa nekunzwa: Izvi zvinogona kukonzerwa nekutetepa kana kushaya nzira dzenzeve. Panogonawo kuva nematambudziko nemapfupa madiki ari pakati pezeve.
• Matambudziko ekufema: Kusakura zvakanaka kwemapfupa echiso, kunyanya shaya nemhino, kunogona kukonzera kutadza kufema. Izvi zvinogona kuva zvakanyanya kune vamwe vana vadiki.
• Mukanwa wakatsemuka: Izvi zvinogona kuita kuti zviome kuyamwisa mwana mucheche, sezvo mukaka uchigona kupinda mumhino paunenge uchiyamwa. Mwana paanokura, zvinogona kuita kuti zviome kutaura uye kutaura mazwi zvakajeka. Fungidzira kuti amai vanonzwa sei kana mwana mudiki achinetseka kuyamwa uye kunwa mukaka.

Vanachiremba vanoziva sei izvi?

Vanachiremba vanogona kufungidzira izvi panguva yekuongororwa kwemwana achangoberekwa kuchipatara. Kana vakaona chitarisiko chechiso chemwana wako uye vachifungidzira kuti ane chirwere cheTreacher Collins, vachakutumira kuna nyanzvi yezvemajini . Vanogona kuita imwe bvunzo kuti vaone kuti chirwere chacho ndechei.

Ndezvipi zvinorapwa zveTreacher Collins Syndrome?

Kurapwa kweizvi kunosiyana kubva pamwana kuenda kumwana . Nekuti havasi vese vana vane mamiriro akafanana, havasi vese vanoda kurapwa kwakafanana.

Chinangwa chikuru chekurapwa kubva pazera diki ndechekuvandudza hutano hwemwana uye kuita kuti mabasa ezuva nezuva, akadai sekudya, kunwa, kufema, uye kunzwa, zvive nyore .

• Kuvhiyiwa nekukurumidza kungave kwakakosha kuti kufema kuve nyore. Mune zvimwe zviitiko zvakakomba, vana vangatofanira kuvhiyiwa tracheostomy , iyo inoiswa chubhu inopinda mumutsipa wavo kuti ivabatsire kufema.
• Pamusoro pezvo, vana vazhinji vanoda kuvhiyiwa kamwe chete kana kupfuura kuti vagadzirise chimiro chechiso uye mashandiro azvo.
• Kana mwana akura zvishoma, kazhinji ava nemakore gumi nemasere kusvika makumi maviri, anogona kufunga nezvekuvhiyiwa kwechiso kana achida.

Chii chinoitwa neReconstructive Surgery?

Kuvhiyiwa uku kwakagadzirirwa kugadzirisa kusarongeka kwechiso chemwana, kuderedza zviratidzo, uye kuvandudza hutano hwemwana. Zvichienderana nemamiriro emwana, kuvhiyiwa kunotevera kunogona kudiwa:

• Shaya: Kana shaya dzacho dzakanyatsorongeka uye mazino akamira zvakanaka, matambudziko ekudya nekufema anogona kuderedzwa. Izvi zvingada chirongwa chekurapa chingagara kwemakore.
• Muromo: Vamwe vana vachatoda kuvhiyiwa kuti pave nemukanwa wakatsemuka . Vamwe vangatoda kubviswa mazino avo kana vaine mazino akazadzwa, kana kuti vangatoda kuisirwa mabraces (orthodontics) kuti vatwasanudze mazino avo.
• Mhino: Kana paine nyama yakawandisa mukati memhino, izvo zviri kukanganisa kufema, kuvhiyiwa kunogona kuvhura nzira uye kuita kuti kufema kuve nyore.
• Nzeve: Zvichienderana nezviratidzo zvemwana, machubhu enzeve anogona kuiswa (izvi zvinobvumira mweya kupinda munzeve yepakati uye zvinovandudza kunzwa), zvinhu zvinobatsira kunzwa zvinogona kushandiswa, kana kuvhiyiwa kunogona kuitwa kuti pavezve nzeve dzekunze. Zvinhu zvinobatsira kunzwa zvinogona kubatsira zvikuru, kunyanya kuvana vezera rekuenda kuchikoro.
• Maziso: Vamwe vana vanoda kuvhiyiwa kuti vagadzirise kukuvara kwemaziso epasi (eyelid coloboma) . Izvi zvinodzivirira ziso uye zvinovandudza chitarisiko.
• Mapfupa eMatama: Kana mapfupa ematama ari madiki uye zvichiita kuti zviomere kudya kana kufema, kuvhiyiwa kwekugadzirisa nzvimbo yacho kunogona kubatsira. Izvi zvinogonawo kusanganisira kushandisa mapfupa akabatanidzwa.

Mamiriro ezvinhu aya anogona kudzivirirwa here?

Izvi zvinokonzerwa nekuchinja kwemajini, saka zvinosuwisa kuti hapana nzira yekuzvidzivirira . Zvisinei, kana mumwe munhu mumhuri yako aine Treacher Collins Syndrome, kana kuti kana uine chirwere ichi, zvakanaka kuti uwane mazano ezvemajini usati wava nemwana. Zvadaro, kana uchironga kuva nemwana, unogona kuongorora njodzi yeizvi kumwana iyeye. Mazano aya achakubatsirawo kugadzirira mupfungwa dzako.

Treacher Collins Syndrome inogona kurapwa zvachose here?

Dambudziko iri harigone kurapwa zvachose . Nekuti chirwere chemajini. Zvisinei, hapana chikonzero chekunetseka , nekuti matambudziko anokonzerwa neizvi, akadai sekuchinja kwechiso, kuoma kwekufema, uye kutadza kunzwa , anogona kugadziriswa zvakanyanya kuburikidza nekuvhiyiwa nedzimwe nzira dzekurapa .

Vana ava vanorarama hupenyu hwakadii?

Iri ndiro dambudziko guru rine vabereki vazhinji. Mashoko akanaka ndeekuti kana mwana wavo akapihwa kurapwa kwakakodzera panguva yakakodzera, anogona kurarama hupenyu hwakanaka sevamwe vese.Kurapwa uye kuteverwa nguva dzose kunogona kudzora zviratidzo uye kuvandudza hupenyu. Zvisinei, sezvambotaurwa, kana zvikasarapwa, vana vanogona kuva nematambudziko anoda kurapwa kwehupenyu hwavo hwese.

Ndinofanira kutarisira sei mwana wangu?

Zvakajairika kunzwa wakaneta, uchitya, uye uchinetseka paunoziva kuti mwana wako ane Treacher Collins Syndrome. Ungave uchinetseka nezvekuti rudzii rwekurapwa ruchadiwa mune ramangwana uye kuti mwana wako achararama sei.

Asi yeuka kuti hausi wega. Chiremba wako, vanamukoti, nevamwe vashandi vekurapa varipo kuti vakubatsire uye vakutungamirire. Vacharamba vachikutarisa iwe nemwana wako, uye vacharamba vachikuzivisa nezvehurongwa hwekurapa uye zvekuita zvinotevera.

Chinhu chinonyanya kukosha chekurangarira ndechekuti Treacher Collins Syndrome haikanganisi kudzidza kwemwana, mashandiro ake, kukura kwake kwese, kukura kwehuropi hwake, kana njere dzake. Kukurudzira mwana wako kutamba, kuedza zvinhu zvitsva zvaanofarira, kuongorora nharaunda yake, uye kushamwaridzana nevamwe vana kuchavabatsira kukura zvakanaka uye kuva nehukama hwakanaka nevamwe. Usazvidza kugona kwavo.

Mibvunzo ipi yandinofanira kubvunza chiremba?

Zvakajairika kuva nemibvunzo yakawanda nezveutano hwemwana wako nechitarisiko chake. Paunoshanyira chiremba, unogona kubvunza mibvunzo yakaita seiyi:

• "Chirwere ichi chichakanganisa sei mwana wangu?"
• "Zvirwere zvipi zvakakomba zvinogona kukonzera izvi?"
• "Mwana wangu achada kuvhiyiwa here? Kana zvakadaro, rudzii rwekuvhiyiwa uye runofanira kuitwa riini?"
• "Chirwere ichi chichakanganisa kukura kwemwana wangu here?"
• "Ndivanaani vamwe nyanzvi vanogona kutibatsira?" (semuenzaniso, nyanzvi yenzeve, mhuno, nehuro, chiremba wemazino, chiremba wekutaura)

Dambudziko iri rinogona kuonekwa here munhu asati aberekwa?

Ehe, dzimwe nguva zvinogoneka. Vanachiremba vanoongorora kukura kwemwana ari mudumbu vachishandisa maultrasound panguva yekuzvitakura. Chiso chemwana wako chinogona kuonekwa paultrasound kubva mumwedzi mitatu yechipiri , mwedzi inenge mina kusvika mitanhatu mushure mekuzvitakura. Dzimwe nguva chirwere cheTreacher Collins Syndrome chinogona kuonekwa pakuongorora uku. Asi chingasaonekwa nguva dzose pakuongorora uku, kunyanya kana paine zviratidzo zvidiki.

Vanhu vane chirwere cheTreacher Collins vanogona kuva nevana here?

Ehe, zvinogoneka zvechokwadi. Hapana dambudziko kuti munhu ane chirwere cheTreacher Collins aroore uye ave nevana zvakajairika. Zvisinei, kana uine chirwere ichi, pane mukana we50% (makumi mashanu nemakumi mashanu) wekuti mwana wako achachipfuudzawo kuburikidza nemajini.Ehe. Izvi hazvirevi kuti zvichaitika kumwana wese, asi pane mukana wekuti zvingaitika. Saka, sezvambotaurwa, zvakakosha kuti uwane mazano ezvemajini.

Izvi zvichakanganisa uropi hwemwana wangu here?

Kwete. Hapana humbowo hwesainzi hunoratidza kuti Treacher Collins Syndrome inokanganisa kukura kwepfungwa dzemwana kana kugona kwake kufunga . Vana ava vanogona kudzidza nekuratidza matarenda sevamwe vana.

Zvisinei, sezvambotaurwa, vamwe vana vanogona kunge vaine matambudziko ekunzwa. Kutadza kunzwa uku kunogona kukonzera kunonoka kukura , sekunonoka kutaura, kunyanya pavanotanga kutaura. Zvisinei, kunyange izvi zvinogona kuvandudzwa zvikuru nekurapwa kwakadai sekubatsira kunzwa uye kurapwa kwekutaura .

Pakupedzisira, zvinhu zvekurangarira...

Mukuona kwedu, vana vedu vese vanokosha, vakakwana. Tose tinoda kuti nyika ivaone saizvozvo. Treacher Collins Syndrome idambudziko guru kumwana, asi harideredzi kukosha kwavo kana kugona kwavo.

Kunyange hazvo pasina mushonga weTreacher Collins Syndrome, vanachiremba vanogona kubatsira nezvinhu zvakawanda. Kune maoparesheni (akadai sekugadzirisazve craniofacial) uye mamwe marapirwo anobatsira nezvinetso zvekufema, kurasikirwa nekunzwa, uye kuchinja kwechiso.

Chinhu chakakosha ndechekuti, hausi wega parwendo urwu . Kune vanachiremba vane mutsa, vane tsitsi, vanamukoti, nevamwe vashandi vehutano vane ruzivo rwekurapa vana vakaita seava. Vachakubatsira nekukutungamira iwe nemwana wako nhanho imwe neimwe yerwendo. Nekurapwa kwakakodzera uye kutarisirwa nerudo, vana ava vanogonawo kurarama hupenyu hune simba, hunofadza, uye hune chinangwa.

Treacher Collins Syndrome, kuremara kwechiso, zvirwere zvemajini, kutadza kunzwa, kuoma kufema, kuvhiyiwa kwekuvakazve