Mwana wako ane matambudziko ekudzora chitarisiko chechiso here? Ngatidzidzei nezveMoebius Syndrome!

Wakamboona here kuti vamwe vacheche vanoomerwa nekuseka, kugadzira zviso zvakanaka, kana kusimudza tsiye dzavo pavanoshamisika? Kana kuti pamwe vanoomerwa nekuyamwa kana kufambisa maziso avo? Nhasi tichataura nezvechirwere chisingawanzoitiki chinogona kunge chiri chikonzero chezvinhu izvi. Chinonzi Moebius Syndrome . Musazvidya mwoyo, ichi chingave chisiri chinhu chavanoziva vanhu vazhinji. Ngatitaurei nezvazvo zvakadzama.

Chii chinonzi Moebius Syndrome?

Muchidimbu, chirwere cheMoebius chirwere chetsinga chinowanikwa pakuzvarwa . Chinoitika kana mwana ari mudumbu, apo dzimwe tsinga dzinokosha dziri mumusoro make (tsinga dzemusoro) hadzikure zvakanaka. Tsinga idzi dzinodzora chitarisiko chechiso chedu uye dzinoita zvinhu zvakawanda, zvakaita sekufambisa maziso edu. Saka chirwere ichi chinoitika kana paine kusasimba mutsinga idzi.

Ichi chirwere chisingawanzoitiki . Chinobata vana vanosvika makumi maviri pavana mazana maviri ezviuru. Kunyangwe pari zvino pasina mushonga wechirwere ichi, kune mamwe maoparesheni nekurapwa kunogona kubatsira kunatsiridza chitarisiko chechiso, kugadzirisa matambudziko emaziso, uye kubatsira nekuchinja kwemuviri kunokonzerwa nechirwere ichi. Kazhinji, vanhu vane chirwere ichi vanogona kurarama hupenyu hwakajairika.

Ndezvipi zviratidzo zveMoebius syndrome?

Chirwere cheMoebius chinogona kukonzera zviratidzo zvakasiyana-siyana. Asi chiratidzo chikuru uye chinowanzoonekwa kusasimba kwetsandanyama dzechiso . Izvi zvinogona kukanganisa zvinhu zvakaita sekudzora chitarisiko chechiso, kufambisa maziso, kuyamwa nekumedza, nezvimwewo.

Vana vanozvarwa vaine chirwere ichi vanonetseka nekuyamwisa . Vangasakwanisa kuyamwa zvakanaka kubva muzamhu kana mubhodhoro. Vangasakwanisa kunyemwerera, kufinyamisa chiso, kana kusimudza tsiye dzavo. Dzimwe nguva, vangasakwanisa kuvhara maziso avo zvakanaka kunyangwe vakarara.

Zvimwe zviratidzo nemamiriro ezvinhu zvinogona kusanganisira:

• Kuva nemuromo wakatsemuka .
• Maziso akapatsanurwa (strabismus) .
• Zvimwe zvikanganiso mumaoko netsoka (semuenzaniso, tsoka yekirabhu , minwe yakarukwa, minwe isipo).
• Kuratidza kunonoka kukura .
• Kurasikirwa nekunzwa .
• Kushaya simba remhasuru (Hypotonia) .
• Kusakwanisa kufambisa maziso kubva kurutivi kuenda kurutivi.
• Hukuru hweshaya diki (Micrognathia) .
• chirwere chePoland (chinokura tsandanyama zvishoma kune rumwe rutivi rwechipfuva).

Vamwe vana vane chirwere cheMoebius vanogonawo kunge vaine chirwere cheautism spectrum disorder . Vana pavanenge vachikura, vanogonawo kusangana nematambudziko akadai sekubvisa mazino kana kushaya mazino.

Ndezvipi zvinetso zveMoebius syndrome?

Vanhu vane chirwere ichi vanogona kurambwa nevanhu nekuti vanotaridzika zvakasiyana uye vanoita zvakasiyana pavanenge vachitaura nevamwe uye vachinyemwerera.

Funga nezvazvo, zviso zvedu zvinowanzo ratidza manzwiro edu. Kana mumwe munhu akakunyemwerera, tinongoerekana tinyemwererawo here? Hatizviiti tichiziva. Ndizvo zvatinodaidza kuti 'kutevedzera kumeso'. Aya ndiwo manzwisisiro atinoita manzwiro evamwe vanhu uye kubatana navo.

Nekuti vanhu vane chirwere cheMoebius vane dambudziko rekutevedzera zviso zvevamwe vanhu nenzira iyi, vanogona kunetseka kuziva nekunzwisisa manzwiro evamwe vanhu . Dzimwe nguva vanogona kutoita sevasina hanya nemanzwiro evamwe vanhu.

Uyewo, nekuti chirwere ichi chinokanganisa matauriro uye chitarisiko chevanhu, vamwe vanhu vanogona kufunga zvisirizvo kuti vane hurema hwepfungwa . Asi handizvo zvazviri. Nekuda kwekusanzwisisa uku, zvimwe zvidzidzo zvakaratidza kuti vanhu ava vanogona kurega kuedza kushamwaridzana nevamwe. Kunzwa uku kwekusurukirwa uye kuzviparadzanisa nevamwe (kunyangwe zvichida nekuda kwavo) kunogonawo kutungamira kumatambudziko ehutano hwepfungwa akadai sekuora mwoyo .

Chii chinokonzera chirwere cheMoebius?

Sezvatakambotaura, chirwere cheMoebius chinoitika kana tsinga dzemusoro dzisingakure zvakanaka mwana achiri mudumbu. Tsinga idzi ndidzo dzinotakura zviratidzo pakati peuropi, musoro, mutsipa, nechipfuva.

Dambudziko iri rinonyanya kukanganisa tsinga yechitanhatu yemusoro (inodzora kufamba kwemaziso) netsinga yechinomwe yemusoro (inodzora kutaridzika kwechiso). Dzimwe nguva rinogonawo kukanganisa kukura kwedzimwe tsinga, dzakadai setsinga yechisere (inodzora kunzwa) netsinga yechipfumbamwe (inodzora kuravira nekumedza).

Nyanzvi hadzisati dzaziva kuti chii chinokonzera izvi, asi pane zvimwe zvikonzero:

• Kuchinja kwemajini kunokanganisa kukura kwetsinga dzemusoro panguva yekuzvitakura.
• Kukuvadzwa kwetsinga yeuropi kunogona kuitika panguva yekuzvitakura nekuda kwekushomeka kweokisijeni kana ropa rinoenda kuuropi. Imwe tsvakiridzo inoratidza kuti kunwa mimwe mishonga kana zvinodhaka zvakaita secocaine kunogona kukanganisa kugoverwa kweropa.

Chirwere cheMoebius chinowanikwa sei?

Vanachiremba vanoongorora chirwere ichi nekutarisa zviratidzo chaizvo :

• Mwana wenyu ari kuongororwa kuti haana simba rechiso kana kuti akaoma mitezo izvo zvagara zviripo kubvira pakuzvarwa uye hazvivandudzike nekufamba kwenguva .
• Vari kuedza kuona kana vachigona kutarira ziso rimwe chete kana kuti ese ari maviri kunze kana kudivi, asi vanogona kuatarisa kumusoro nekudzika.

Vanachiremba vanogona kushandisa mimwe miedzo kuti vaone kana paine zvimwe zvirwere zvinogona kukonzera zviratidzo izvi.Pane mukana zvakare wekuita bvunzo.

Ndeipi mishonga yekurapa Moebius syndrome?

Nzira dzekurapa dzinosiyana zvichienderana nemamiriro emwana wako. Marapirwo akajairika anosanganisira kuvhiyiwa, physiotherapy, uye rutsigiro rwehutano hwepfungwa .

Kuvhiya

Mamwe maoparesheni akaitwa kurapa zviratidzo zveMoebius syndrome ndeaya:

• Kuvhiyiwa kwemukanwa wakachekwa : Izvi zvinogadzirisa mukanwa wakachekwa mumwana.
• "Kuvhiya kunyemwerera" (Kuvhiya kwekugadzirisa kumeso / "kuvhiya kunyemwerera") : Uku kuvhiya kunoitwa ne microsurgery . Tsandanyama dzinotorwa kubva kune imwe nhengo yemuviri wemwana dzoiswa kumeso. Mwana anozokwanisa kunyemwerera uye kuita zvimwe zvitarisiko zvechiso kusvika pamwero wakati.
• Kuvhiyiwa kweStrabismus : Izvi zvinosanganisira kusunungura kana kusimbisa tsandanyama dzemaziso kuti maziso anongedzere divi rimwe chete uye ashande pamwe chete.

Mamwe marapirwo

Vacheche nevana vane chirwere ichi vanogonawo kurapwa seizvi:

• Kurapa muviri : Kurapa uku kunobatsira vacheche nevana kukudziridza hunyanzvi hwekufamba kwemuviri hunosanganisira mapoka avo makuru emhasuru. Nyanzvi yekurovedza muviri inogona kubatsira mwana kufamba uye kusimba.
• Kurapa nekutaura : Moebius syndrome inogona kukanganisa kugona kwemwana kuyamwa nekunwa. Inogonawo kukanganisa kugona kwevana vakuru kutaura. Nyanzvi dzezvirwere zvemutauro wekutaura dzinonyanya kutarisa pamatambudziko ekudyisa vacheche uye matambudziko ekutaura nemutauro muvana vakuru.
• Kudhonza nekukanda (nzira yePonsetti) : Iyi inzira yekurapa tsoka dzechikwata .
• Kurapa Kwemabasa : Nyanzvi idzi dzinobatsira vana kuita mabasa ezuva nezuva, kukudziridza hunyanzvi hwavo hwekufambisa nhengo dzemuviri , hunyanzvi hwekuona, uye hunyanzvi hwekugadzirisa manzwiro.
• Rubatsiro rwekukanganisika kwekunzwa : Dambudziko iri rinogonawo kukanganisa tsinga dzemusoro dzinodzora kunzwa, saka rubatsiro runodiwa runopihwa pakuita izvozvo.
• Rutsigiro rwehutano hwepfungwa : Ongororo dzakaratidza kuti vanhu vane Moebius syndrome vanogona kusangana nematambudziko ekuora mwoyo, kuzvidya mwoyo, kana kuzviremekedza. Saka, rubatsiro runopiwawo kune avo.

Chii chandinofanira kutarisira kana mwana wangu aine chirwere cheMoebius?

Kana mwana wako aine chirwere ichi, unogona kutarisira zvinotevera:

• Aigona kubatsirwa nematambudziko emuviri, kunyanya zvinhu zvakaita se "kuvhiyiwa kwekunyemwerera."
• Angangoda kurapwa nemuviri, kurapwa nekutaura, uye kurapwa nebasa.
• Kana paine kunonoka kwekukura,Mabasa ekupindira nekukurumidza anogona kubatsira.
• Angangoda rubatsiro rwehutano hwepfungwa.

Ko Moebius syndrome inokanganisa hupenyu hwemunhu here?

Kwete, hapana mhedzisiro yakadaro. Vanhu vazhinji vane chirwere cheMoebius vanorapwa vanorarama hupenyu hwakajairwa .

Chirwere cheMoebius chinogona kudzivirirwa here?

Parizvino hapana nzira yekudzivirira izvi. Masayendisiti achiri kuferefeta zvinokonzera uye zvinhu zvinopa njodzi.

Ndingazvitarisira sei ini nemwana wangu?

Moebius syndrome inogona kukanganisa mwana wako nenzira dzakawanda. Kunzwisisa kuti chirwere ichi chinokanganisa sei mwana wako kuchakubatsira kuronga rutsigiro rwaanoda iye zvino uye mune ramangwana. Uyewo, paunenge uchironga, funga nezvezvaunogona kuita kuti uzvibatsire. Kuchengeta mwana ane chirwere ichi kunogona kunetsa, kunetsa, uye kusurukirwa . Saka zvichengete.

• Tsvaga mapoka ekutsigira : Bvunza chiremba wemwana wako nezvemapoka ekutsigira chirwere cheMoebius. Kutaura nevamwe vari kutarisana nematambudziko akafanana newe kunogona kubatsira kuderedza kusurukirwa.
• Taura manzwiro ako : Ungave nemazuva (nehusiku) paunonzwa kunetseka, hasha, kana kutya. Unganzwa kusuruvara kana kuora mwoyo. Funga nezvekutaura nachiremba wepfungwa.
• Zorora : Zvinogona kunetsa kutarisira mwana ane chirwere ichi. Shamwari nemhuri vanogona kukubatsira.

Mibvunzo ipi yandinofanira kubvunza chiremba wemwana wangu?

Moebius syndrome chirwere chisingawanzoitiki. Ungave usina kumbonzwa nezvacho kare. Heano mimwe mibvunzo yaunogona kubvunza chiremba wemwana wako:

• Ndedzipi tsinga dzemusoro dzinokanganiswa?
• Ndeapi nyanzvi dziripo dzinogona kubatsira nezviratidzo izvi?
• Ndinofanira kufunga nezvekuvhiyiwa kwemwana wangu here?
• Nhengo dzemhuri yangu dzinofanira kuongororwa majini kana kupiwa mazano here?

Kana mwana wako aine chirwere cheMoebius syndrome, unogona kupedza maawa mashoma ekutanga, mazuva, uye mavhiki mushure mekuongororwa uchiedza kunzwisisa kuti chirwere ichi chichakanganisa sei hupenyu hwemwana wako nehwenyu. Unganzwa hasha, kuzvidya mwoyo, uye kuremerwa. Chikwata chevanachiremba vemwana wako chichanzwisisa maitiro ako. Vachatora nguva yekupindura mibvunzo yako nezvezvavanogona kuita kubatsira mwana wako uye zvaunogona kuita kuti utarisire mwana wako.

Pakupedzisira, yeuka izvi.

Kunyange hazvo chirwere cheMoebius chiri chirwere chinonetsa, kana ukapihwa mazano ekurapa, kurapwa, uye kutarisirwa nerudo, unogona kubatsira mwana wako kurarama hupenyu huri nani. Yeuka, hausi wega. Zvakakosha kuwana rubatsiro rwaunoda, uye kuzvitarisira. Kuramba wakasimba uye uine tariroRwendo urwu ruchava sosi huru yesimba kwauri nemwana wako.

Moebius Syndrome, Tsinga dzeChiso, Zvirema zveKuberekwa, Hutano hweVana, Zvirwere zveHuropi, Kuonekwa kwechiso