Saamai kana baba, chiroto chedu chikuru ndechekuva nemwana ane hutano hwakanaka. Asi dzimwe nguva vana vedu vanogona kuuya munyika ino vaine zvirwere zvisingawanzoitiki. Mwana wenyu mudiki anotaridzika kunge mudiki pane zera rake here? Chiso chake chine chitarisiko chakasiyana, chakakosha pane chevamwe vana here? Uye anofarira kushamwaridzana here, achinyemwerera uye achitaura nemunhu wese waanoona? Izvi dzimwe nguva zvinogona kuva zviratidzo zvechirwere chisingawanzoitiki chinonzi "Williams Syndrome". Usazvidya moyo, tichataura nezvazvo zvakajeka uye zviri nyore.
Zvichitaurwa zviri nyore, chii chinonzi Williams Syndrome?
Williams syndrome, dzimwe nguva inonzi Williams-Beuren syndrome, chirwere chemajini chisingawanzoitiki. Zvichitaurwa zviri nyore, machromosome, ari mukati memasero emuviri wedu, anosarudza zvese kubva pakureba kwedu kusvika kuruvara rwedu nechitarisiko chedu. Akafanana nebhuku remirayiridzo rinovaka miviri yedu. Mwana ane Williams syndrome ane kachikamu kadiki kechromosome 7 kasipo. Zvakafanana nemapeji mashoma asipo mubhuku remirayiridzo. Ichi chikamu chidiki chejini chinokonzera zviratidzo zvine chekuita nechirwere ichi.
Dambudziko iri rinogona kukanganisa kukura kwemwana, kugona kwake kudzidza, mashandiro emwoyo, uye chitarisiko chake. Rinogonawo kukonzera mamwe matambudziko emahormone, akadai sekuwedzera kwecalcium muropa, thyroid isingashande zvakanaka, uye kutanga kuyaruka.
Dambudziko iri rinoitika sei? Ndiani anowana izvi ?
Kazhinji, ichi hachisi chinhu chinotorwa kubva kuna amai kana baba. Ikushanduka kwemuviri kunoitika panguva yekubata pamuviri, zvichikonzera kurasikirwa kwechikamu chechromosome yechinomwe. Saka, amai kana baba havagoni kupomerwa mhosva yeizvi. Ichi hachisi chinhu chinogona kudziviswa nemunhu wese.
Zvisinei, kana munhu ane chirwere cheWilliams syndrome aine mwana, pane mukana we50% wekuti mwana wacho agare nhaka chirwere ichi.
Ichi chirwere chisingawanzoitiki. Zvichienderana nenhamba dziri munyika dzakadai seAmerica, mwana mumwe chete pavana zviuru gumi vanoberekwa ane chirwere ichi. Kune vana vane chirwere ichi muSri Lanka zvakare, asi hazviwanzoitiki.
Dambudziko iri rinokanganisa sei mwana wangu?
Kurera mwana ane Williams Syndrome kunogona kuva dambudziko, asi kana vakangoziva mwana wavo nekukurumidza uye vachimurapa nekutsigira, vanogonawo kusvika padanho ravo rakazara.
Fungai, nekuti vana ava vane majoini asina kusimba, vanotanga kugara nekufamba zvishoma pane vamwe vana. Vanogonawo kunge vaine zvimwe zvirema zvekuzvarwa nazvo mumoyo yavo kana mutsinga dzeropa dzine chekuita nemoyo. Dzimwe nguva izvi zvingada kuvhiyiwa. Saka, kuongororwa nguva dzose kwechiremba kunodiwa.
Chimwe chezvinhu zvinoshamisa nezvevana ava ndechekuti vane hunyanzvi hwepamusoro hwekutaura nekutaurirana. Vanotaura zvakanaka uye vane hushamwari. Asi nekuda kwetarenda iri, dzimwe nguva tinorasikirwa nekushaya simba kwavo pakudzidza, semuenzaniso, kuoma kudzidza manhamba nemabhii. Vanonetseka zvishoma kunzwisisa musiyano uripo pakati pechinhu chimwe nechimwe (spatial reasoning).
Uyewo, yeukai kuti vana ava vane ndangariro dzakanaka kwenguva refu. Asi vanogona kunge vaine zvirwere zvakaita seADHD (Attention-Deficit/Hyperactivity Disorder), uko vanoomerwa nekugara vakaisa pfungwa dzavo pane chimwe chinhu.
Ndezvipi zviratidzo zvinowanzoonekwa?
Havasi vana vese vane chirwere cheWilliams vakafanana. Vamwe vanogona kunge vaine zviratidzo zvakawanda, vamwe vangave nezvishoma. Ngatitsanangure zviratidzo izvi.
| Chikamu chehunhu | Zvinhu zvekuona |
|---|---|
| Chitarisiko chemuviri |
|
| Kukura uye maitiro | |
| Mamwe matambudziko ehutano |
Zvinhu zvekungwarira zvikuru: Chirwere chemwoyo
Dambudziko guru rinoonekwa muchirwere ichi chirwere chemwoyo. Kunyanya, kutetepa (stenosis) kwetsinga huru dzeropa dzakabatana nemoyo netsinga dzinotakura ropa kuenda kumapapu kunogona kuonekwa. Izvi zvinogona kukonzera kukwira kweropa, kurova kwemoyo kusina kurongeka (arrhythmia), uye dzimwe nguva kutotadza kushanda zvakanaka kwemoyo. Kazhinji, fungidziro yekutanga yekuti mwana ane Williams syndrome imhaka yedambudziko remoyo iri.
Vanachiremba vanoongorora sei chirwere ichi?
Dambudziko iri rinowanzoonekwa muhucheche kana muhudiki. Kana chiremba wako achifungidzira nezve chitarisiko chemwana wako uye zviratidzo zvake, ndiye anotanga amuongorora mwana wacho nokungwarira.
Zvadaro, bvunzo chaiyo yemajini inozoitwa kusimbisa chirwere ichi. Izvi zvakafanana neongororo yeropa yenguva dzose. Izvi zvinogona kuona kana chikamu ichocho chechromosome 7 chandambotaura kare chisipo.
Pamusoro pezvo, mimwe miedzo yakati wandei inogona kuitwa kusimbisa zvimwe zviratidzo zvemwana:
- Kutarisa moyo: ECG kana Echocardiogram (ultrasound scan yemoyo)
- Kuyerwa kweBP: Tarisa kuti uone kana BP yako yakakwira zvisina kujairika.
- Kuongororwa kweropa neweti: Tarisa mashandiro eitsvo uye huwandu hwecalcium muropa.
Inorapwa sei? Izvi zvinogona kurapwa here?
Chirwere cheWilliams hachisi chirwere chinorapika zvachose. Nekuti chinokonzerwa nekuchinja kwemajini. Zvisinei, zviratidzo nematambudziko anokonzerwa nacho zvinogona kugadziriswa zvakanaka. Izvi zvinoreva kuti tinogona kuita zvese zvatinogona kuti tibatsire mwana kurarama hupenyu hwakanaka uye hunofadza.
Hurongwa hwekurapa hunosiyana kubva pamwana kuenda kumwana, zvichienderana nezviratidzo zvemwana.
- Kushanyira chiremba wemwoyo: Kana paine dambudziko remwoyo, ndiye achasarudza kuti ndeapi marapirwo anodiwa (zvichida mishonga kana kuvhiyiwa).
- Zvirongwa Zvekupindira Pakutanga:Zvakakosha zvikuru kuendesa mwana kuzvinhu zvakaita sekurapa kutaura uye physiotherapy kudzivirira kunonoka kukura.
- Dzidzo Yakakosha: Kana paine matambudziko ekudzidza, mwana anoda hurongwa hwedzidzo hwakagadzirirwa zvaanoda.
- Dzimwe nyanzvi: Kana calcium yakawanda muropa rako, ungangoda kuona chiremba wezvemapfupa kana nyanzvi yezvekudya. Ungangodawo kutsvaga rubatsiro kubva kune nyanzvi dzezvemazino, maziso, nedzenzeve.
Chii chandinofanira kuziva semubereki?
Zvakajairika kunzwa kusuruvara uye kutya kana wabatwa nechirwere chakadai. Asi chinonyanya kukosha ndechekupa mwana wako rudo, kutarisira, uye kumutsigira zvakanakisisa.
- Ona chiremba wako nenguva: Zvakakosha kugara uchitarisa hutano hwemwana wako, kunyanya kana paine matambudziko emwoyo.
- Iva nemwoyo murefu: Mwana wako anodzidza zvese nekumhanya kwake. Shanda naye nemoyo murefu uye nerudo. Tenda kunyangwe zvaakaita zvidiki.
- Hausi wega: Taura nevamwe vabereki vane vana vakaita seizvi. Zvakaitika kwavari zvichakusimbisa zvikuru. Zvakare, taura pachena nachiremba wako nezvemibvunzo yako nezvinokunetsa.
Vanhu vazhinji vane chirwere cheWilliams syndrome vanorarama hupenyu hwakafanana nehwevamwe. Zvisinei, matambudziko makuru emwoyo dzimwe nguva anogona kupfupisa hupenyu hwavo. Vangangoda rutsigiro rwakati wandei pavanenge vachikura.
Unofanira kuona chiremba rini?
Kana mwana wako aine zviratidzo zvinotevera, zvakakosha kuti aone chiremba wevana kuti akupe mazano.
| Mukana | Tsananguro |
|---|---|
| Kunonoka kwekukura | Kana mwana akanonoka kusimudza musoro wake, kukunguruka, kugara, kufamba, kana kutaura pazera rakakodzera. |
| Kutapukirwa kakawanda | Kunyanya kana hutachiona hwenzeve huchiitika kakawanda kana mwana achiita seanonetseka kunzwa. |
| Matambudziko ekudya | Kana mwana wako achinetseka nekunwa mukaka kana kudya. |
Unofanira kuenda kuEmergency Treatment Unit (ETU) riini?
Kana mwana akaratidza chimwe chezviratidzo zvinotevera zvechirwere chemwoyo, kurumidza kumuendesa kuEmergency Department (ETU) yechipatara chiri pedyo.
- Kushanduka kweruvara rwebhuruu/pepuru kweganda kana miromo .
- Kufema nekukurumidza kana kuoma kufema.
- Kuomerwa zvakanyanya nekudya.
- Kurova kwemoyo kunokurumidza zvikuru.
- Kuzvimba kwemuviri, kunyanya kumeso nemakumbo .
Dambudziko iri haritapukiri, asi rudo uye hunhu hwevana ava "hunotapurirana" zvechokwadi. Vanounza mufaro kune wese munhu akavapoteredza. Kubata nechirwere chitsva kunogona kuoma, saka gara uchipa mwana wako rutsigiro rwako.
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheWilliams hachikonzerwi nemhosva yevabereki. Kuchinja kwemajini kunoitika netsaona panguva yekubata pamuviri.
- Vana ava vane chitarisiko chakasiyana, chine rudo uye vane hunhu hune hushamwari uye hune hukama.
- Dambudziko guru rehutano inyaya dzemwoyo netsinga dzeropa. Saka, kuongororwa nachiremba nguva dzose kwakakosha zvikuru.
- Kunyangwe vaine matambudziko ekudzidza, vanogona kuva nehunyanzvi hwekutaura hwakanaka uye kurangarira kwenguva refu.
- Kuongororwa kwechirwere nekukurumidza uye kutumirwa kune zvirongwa zvekurapa zvinodiwa zvinogona kubatsira mwana kurarama hupenyu hwakanaka.
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