Mwana wako mudiki anofarira kushamwaridzana here? Munhu ane rudo zvikuru anonyemwerera uye anotaura nemunhu wese waanoona here? Panguva imwe chete, dzimwe nguva pane kunonoka kudiki pakukura kana matambudziko ekudzidza here? Dzimwe nguva, seri kwehunhu hwakadaro, panogona kunge paine chirwere chemajini chisingawanzoitiki chinonzi Williams Syndrome. Usatye paunonzwa zita iri. Ichi chinhu chatinofanira kutaura nezvacho uye kunzwisisa. Nhasi, tichataura nezvezvinhu zvese nenzira iri nyore yaunogona kunzwisisa.
Zvichitaurwa zviri nyore, chii chinonzi Williams Syndrome?
Williams syndrome, dzimwe nguva inonzi Williams-Beuren syndrome, chirwere chisingawanzoitika panguva yekuzvarwa. Chinokanganisa kukura kwetsinga. Vana vane chirwere ichi vanogona kunge vaine chitarisiko chakasiyana, kunonoka kukura, matambudziko ekudzidza, uye kusagadzikana kwemwoyo.
Fungidzira kuti muviri wedu wakagadzirwa nebhuku guru remirayiridzo. Bhuku iri remirayiridzo rine majini. Majini aya ari mumachromosome. Tine ma chromosomes maviri nematatu, ayo anosvika makumi mana nematanhatu ese . Munhu ane Williams syndrome ane kachidimbu kadiki kasipo kubva kuchromosome 7. Zvakafanana nepeji risipo mubhuku iroro remirayiridzo. Nekuda kwepeji iri risipo, mamwe mabasa emuviri nekukura kwawo zvinoitika zvakasiyana. Ndizvo zvatinodaidza kuti Williams syndrome.
Chinhu chakakosha ndechekuti, ichi hachisi chinhu chinowanzo gara nhaka kubva kuvabereki kuenda kuvana. Uku kuchinja kwemajini kunoitika netsaona. Saka usazvipa mhosva nekuda kweizvi.
Mamiriro ezvinhu aya anogona kuitei pamwana?
Havasi vana vese vane chirwere ichi vakafanana. Zviratidzo zvinogona kusiyana kubva pamunhu kuenda kune mumwe. Asi pane zvimwe zviratidzo zvakajairika. Ngatizvitsanangure.
Hunhu hwemuviri uye chitarisiko
Vana ava vanogona kuva nechitarisiko chakanaka kwazvo uye chakasiyana.
| Hunhu | Tsananguro |
|---|---|
| Chiso | Matama akazara, muromo wakafara, miromo inoonekwa, mhino diki yakatarira kumusoro, chirebvu chidiki. |
| Maziso | Makumbo eganda (epicanthal folds) anogona kuonekwa pakona yemukati meziso. |
| Mazino | Mazino madiki, mipata iri pakati pemazino, mazino asipo, kana enamel isina simba. |
| Kureba | Vanhu vazhinji vapfupi pane avhareji pakureba. Kukura kunogona kunonoka panguva yehudiki. |
Kukura uye maitiro
Vana ava vanotora nguva kuti vasvike padanho rekukura, asi vanewo hunyanzvi hwavo.
- Kutaura: Vangave vanonoka zvishoma kutanga kutaura, asi kana vangotanga kutaura, vanenge vava nehunyanzvi hwemutauro hwakanaka . Vane hunyanzvi hwekutaura zvakanaka uye zvinotsanangura.
- Kufamba: Nekuda kwekusasimba kwetsandanyama (hypotonia), zvinotora nguva yakareba kupfuura vamwe vana kuti vadzidze zvinhu zvakaita sekugara nekufamba.
- Kudzidza: Vangave vachiomerwa nekudzidza manhamba, mavara, uye kunzwisisa nzvimbo (kumusoro, pasi, pedyo, kure). Asi vane ndangariro dzakanaka .
- Kushamwaridzana: Uhu ndihwo hunhu hunonyanya kuzivikanwa nevana ava. Vane hushamwari, rudo, uye tsitsi. Vanoomerwa nekuziva vanhu vavasingazive, saka vanokurumidza kushamwaridzana nemunhu chero upi zvake. Dzimwe nguva vanogona kutotanga kuzvidya mwoyo zvakanyanya kana kutya zvimwe zvinhu (phobias).
Mamwe matambudziko ehutano
Dambudziko iri rinogonawo kukonzera mamwe matambudziko ehutano. Zvakakosha kuziva izvi.
- Chirwere chemwoyo: Ichi ndicho chinhu chakakosha kuchenjerera . Kutetepa kwetsinga huru dzeropa dzakabatana nemoyo kwakajairika. Izvi zvinogona kutungamira kuzvirwere zvakaita seBP yakakwira uye kurova kwemoyo kusina kurongeka (arrhythmia).
- Mazinga ecalcium: Mazinga ecalcium muropa nemuweti anogona kuwedzera.
- Matambudziko emahormone: Pane njodzi ye hypothyroidism, kuyaruka, uye chirwere cheshuga mukukura.
- Utachiona hwenzeve: Utachiona hwenzeve hunogara huchiitika hunogona kukonzera kurasikirwa nekunzwa.
- Zvimwe: Scoliosis, kuoma kudya panguva yehudiki, uye matambudziko ekuona (kuona zviri kure) zvinogonawo kuonekwa.
Chiremba anoongorora sei izvi?
Chiremba wako anogona kufunga nezvedambudziko iri kana achifungidzira kuti mwana wako ane kunonoka kukura kana kuti ari kunetseka nezvekuonekwa kwake. Nzira huru yekusimbisa chirwere ichi ndeyekuongorora majini . Izvi zvakafanana nekuongororwa ropa nguva dzose. Inogona kutarisa kana paine chromosome 7 isipo.
Uye zvakare, mimwe miedzo yakati wandei inogona kuitwa kusimbisa zvimwe zviratidzo:
- Kuongororwa kwemoyo: Kuongororwa kwemoyo (ECG) kana kuti kuongororwa kwemoyo (Echocardiogram) kunoitirwa kutarisa matambudziko emwoyo netsinga dzeropa.
- Kuyerwa kweBP: Zvakakosha kuti mwana wako agare achiongorora BP yake nguva nenguva.
- Kuongororwa kweropa neweti: Kuongororwa uku kunoitwa kuti kuonekwe huwandu hwecalcium mumuviri uye mashandiro eitsvo.
Inorapwa uye inodzorwa sei?
Chirwere cheWilliams hachigone kurapwa zvachose nekuti chirwere ichi chinokonzerwa nemajini. Zvisinei, zviratidzo nematambudziko anokonzerwa nacho zvinogona kugadziriswa zvakanaka uye mwana anogona kurarama hupenyu hwakanaka uye hunofadza.
Hurongwa hwekurapa hunosiyana kubva pamwana kuenda kumwana uye hunoda rubatsiro rwevanachiremba vakasiyana-siyana.
1. Chiremba wemwoyo: Zvakakosha kugara uchiongorora moyo wemwana. Kana paine dambudziko, mushonga unodiwa (mushonga kana kuvhiyiwa) uchapihwa.
2. Kurapa Nekukurumidza: Kune nzira dzakasiyana-siyana dzekurapa dzinobatsira kukura nekudzidza kwemwana. Kurapa Nekutaura, Kurapa Nemabasa, uye Kurapa Nemuviri (Physiotherapy) ndizvo zvinonyanya kukosha.
3. Dzidzo Yakakosha: Nzira dzedzidzo dzakakosha dzingadikanwa kuti ukwanise kukunda matambudziko ekudzidza angamuka kuchikoro.
4. Dzimwe nyanzvi: Zvakakosha kuona vanachiremba vane hunyanzvi munzvimbo idzi kuti vadzore huwandu hwecalcium mumuviri, varape matambudziko emahormone, uye vaongorore hutano hwemazino ako nemaziso.
Nguva yekuona chiremba uye nguva yekuenda kuETU
Zvakakosha zvikuru kutarisisa hutano hwemwana wako. Usanonoka kutsvaga rubatsiro rwechiremba mumamiriro ezvinhu anotevera.
| Mukana | Zvekuita |
|---|---|
| Ona chiremba wako... | |
| Kana matanho ekukura akanonoka (semuenzaniso, kufamba kunonoka kana kutaura). | Taura nachiremba wako nezvekukura kwemwana wako. |
| Kana uchigara uine hutachiona munzeve kana kuti uri kunzwa kurasikirwa nekunzwa. | Zvinokurudzirwa kuona nyanzvi yezvenzeve, mhuno, nepahuro. |
| Kana uchinetseka kudya. | Tsvaga rubatsiro rwechiremba nezvekudya kunovaka muviri uye matambudziko ekumedza. |
| Enda kuEmergency Treatment Unit (ETU) yechipatara nekukasika... | |
| Kana unoratidza zviratidzo zvechirwere chemwoyo. |
|
Semubereki, rudo rwako, rutsigiro, uye mwoyo murefu ndizvo zvinopa mwana wako simba guru. Hunhu hwerudo uye hune hukama hwevana ava hunoita kuti vadiwe nemunhu wese.
Mharidzo Yekuenda Nayo Kumba
- Williams syndrome chirwere chisingawanzoitiki chinokonzerwa nekurasikirwa kwechikamu chechromosome 7. Izvi hazvisi zvinhu zvinokonzerwa nemhosva yevabereki.
- Vana ava vanogona kushamwaridzana nevanhu, kuva nerudo, uye kuva nehunyanzvi hwakanaka hwekutaura.
- Chinhu chinonyanya kukosha matambudziko ane chekuita nemoyo, saka kuongororwa nguva dzose nachiremba wemwoyo kwakakosha zvikuru.
- Kunyange hazvo chirwere ichi chisingarapiki, zviratidzo zvinogona kugadziriswa uye mwana anogona kurarama hupenyu hwakanaka kana achinge awana rubatsiro nekurapwa kwakakodzera.
- Kana muine zvinokunetsai nezvemwana wenyu, taurai nachiremba wenyu pachena nezvazvo.
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