Mwana wako mudiki anofarira kushamwaridzana here? Anonyemwerera uye anotaura nemunhu wese waanosangana naye, uye ane hushamwari zvinoshamisa here? Pamwe wakaona kuti ane chitarisiko chakasiyana zvishoma nechiso chake nevamwe vana. Kana, pamwe chete nezvinhu izvi, painewo kunonoka kudiki pakukura kwemwana uye matambudziko emwoyo, tiri kutaura nezvechirwere chemajini chisingawanzoitiki chinogona kunge chiri chikonzero. Usatya mushure mekuverenga izvi. Ruzivo urwu ruchakubatsira kunzwisisa izvi zviri nani.
Chii chinonzi Williams Syndrome?
Zvichitaurwa zviri nyore, Williams Syndrome (WS) chirwere chisingawanzoitiki chemajini . Chinokonzerwa nekuchinja kudiki mumajini edu. Mwana ane chirwere ichi anogona kunge aine matambudziko nenhengo dzakasiyana dzemuviri, kunyanya nhengo dzakadai setsinga dzeropa, moyo neitsvo. Anewo chimiro chechiso chakasiyana, matambudziko ekudzidza uye hunhu hwakasiyana.
Chinhu chakakosha ndechekuti kunyangwe pasina mushonga wakakwana weizvi, nekurapwa kwakakodzera uye rutsigiro, zviratidzo zvemwana zvinogona kudzorwa uye zvinogona kubatsira zvikuru kukunda matambudziko ehupenyu hwezuva nezuva.
Kusiyana kuripo pakati peDown Syndrome neWilliams Syndrome
Zvese izvi zvirwere zvemajini. Zvese zvinogona kukonzera matambudziko mumoyo nemutsinga. Asi zvikonzero zveizvi zviviri zvakasiyana. Down syndrome inokonzerwa nekuwedzera kwechimwe chinhu chinonzi chromosome mumasero emuviri wedu. Williams syndrome inokonzerwa nekurasikirwa nechikamu chidiki chechromosome .
Chii chinokonzera chirwere cheWilliams?
Funga nezvemiviri yedu sebhuku guru remirayiridzo. Mapeji ebhuku rino anonzi machromosome. Kune mapeji makumi mana nematanhatu akadaro (23 pears) mumasero edu ese. Papeji rechinomwe rebhuku rino (Chromosome 7) ndipo pakanyorwa mirairo yakawanda yekuvaka miviri yedu.
Mwana ane chirwere cheWilliams anozvarwa asina chikamu chidiki chepeji rechinomwe iri, rine majini angangoita 25 kana 27. Zvakaita sekuti chidimbu chidiki chepeji mubhuku remirairo chabviswa. Zviratidzo zvinoratidzwa nemwana zvinoenderana nekuti ndeapi majini aripo. Semuenzaniso, kana jini rinonzi `ELN` risipo, rinogona kukonzera matambudziko pamwoyo netsinga dzeropa.
Iyi haisi mhosva yaamai kana baba. Kazhinji, inokonzerwa nekuchinja kwembeu kana zai kunoitika zvisina tsarukano. Kureva kuti, zvinoitika zvisina tsarukano zvachose . Kashoma, kana mumwe wevabereki aine chirwere ichi, mwana anogonawo kuchigara nhaka.
Izvi zvakajairika zvakadii?
Ichi chirwere chisingawanzoitiki. Chinowanzobata munhu mumwe chete pavanhu 7,500 kusvika ku10,000.
Zviratidzo izvi ndezvipi?
Havasi vana vese vane Williams syndrome vakafanana. Vamwe vanogona kunge vaine zviratidzo zvishoma, nepo vamwe vangave nezvakawanda. Uye kuoma kwazvo kunogona kusiyana. Ngatitarisei zviratidzo zvikuru.
| Rudzi rwehunhu | Zvinhu zvekuona |
|---|---|
| Zvimiro zvechiso zvakakosha | Huma yakafara, mhino pfupi yakatenderera, muromo wakafara une miromo yakazara, chirebvu chidiki, makwinya pamakona emaziso, uye nyeredzi chena yakatenderera machena emaziso. Vamwe vana vane mazino madiki, mipata pakati pemazino, kana mazino akakombama. |
| Hunhu hwakakosha | Kuva munhu anofarira kushamwaridzana nevanhu uye anotaura, kuva neushamwari hwakanyanya kunyangwe kune vanhu vausingazive, kunzwisisa manzwiro evamwe zvakanaka (tsitsi), kuzvidya mwoyo zvakanyanya uye kutya zvinhu zvakasiyana-siyana (kutya), kuoma kudzora manzwiro. ADHD inowanzoitikawo. |
| Kunonoka kwekukura | Kuberekwa mwana asina huremu hwakakwana, kunetseka kuyamwisa, kunonoka kuwedzera huremu nekukura. Kunonoka kugara, kufamba, nezvimwewo. Kuomerwa nekushanda nesimba kwemuviri sekubata chinyoreso. |
| Matambudziko emwoyo netsinga dzeropa | Zvirwere zvakaita sekutetepa kwetsinga huru yeropa (aorta) inotakura ropa kubva pamoyo kuenda kumuviri (Supravalvular aortic stenosis - SVAS), kutepa kwetsinga inotakura ropa kuenda kumapapu (pulmonary stenosis), kukwira kweropa, uye kurova kwemoyo kusina kurongeka (arrhythmia) zvinowanzoitika. Izvi ndizvo zviratidzo zvekutanga kuonekwa. |
| Mamwe matambudziko ehutano | Kuwedzera kwecalcium muropa, hutachiona hwenzeve hunowanzoitika, scoliosis, matambudziko eitsvo, matambudziko emajoini nemapfupa, kutsvuka kwemusoro, uye kutanga kuyaruka. |
Kusiyana kwekudzidza
Vana vanosvika 75% vane chirwere cheWilliams vanogona kunge vaine hurema hwepfungwa hushoma. Izvi zvinogona kukonzera matambudziko ekudzidza. Kune rumwe rutivi, vana ava vane ndangariro dzinoshamisa . Vanogonawo kunge vaine hunyanzvi hwemutauro nekutaura, hunyanzvi hwekuverenga, uye hunyanzvi hukuru hwemimhanzi .
Kuongororwa kwechirwere kunoitwa sei?
Chiremba wako achatanga aongorora mwana wako, obvunza nezvenhoroondo yeutano hwemhuri yake, uye otarisa chero zviratidzo zvakakosha pachiso chake.
Kana paine chinofungidzirwa kuti chirwere cheWilliams syndrome, kuongororwa ropa kunogona kuitwa kuti chisimbiswe. Pane nzira mbiri huru dzekuita izvi:
1. Kuongororwa kweHOVE (Fluorescence in situ hybridization): Kuongororwa uku kunotsvaga zvakananga jini `ELN` risipo pachromosome 7. Vanhu vazhinji vane Williams syndrome havana jini iri.
2. Chromosome microarray: Iyi bvunzo yemazuva ano uye inoshandiswa zvakanyanya. Inotarisa machromosome ese emwana uye inoona kana paine chikamu cheDNA chisipo. Inogona zvakare kuona kuti ndeapi majini asipo, zvichipa chiremba pfungwa iri nani yezviratidzo zvingave nemwana.
Pamusoro pezvo, mimwe miedzo inogona kurairwa kuti ionekwe mamiriro emukati memuviri wemwana.
- Kuongororwa kweEKG kana Ultrasound scan kana paine matambudziko emwoyo.
- Kuongororwa kweUltrasound kuti uone mamiriro eitsvo nedundira.
- Kuongorora huwandu hwecalcium muropa kana weti.
Inorapwa sei?
Sezvatakambotaura, chirwere ichi hachigone kurapwa zvachose. Zvisinei, kurapwa kunogona kubatsira kudzora zviratidzo uye kubatsira mwana kurarama hupenyu hwakanaka. Izvi zvinoda rubatsiro rwenyanzvi dzakasiyana-siyana.
- Chiremba wemwoyo: Kune matambudziko emwoyo.
- Nyanzvi yeEndocrinologist: Kune matambudziko ane chekuita nemahormone uye calcium mazinga.
- Nyanzvi yeNzeve, Mhino neHuro (Chiremba weENT): Kune hutachiona hwenzeve.
- Murapi wemuviri: Kuvandudza kufamba kwemuviri uye simba remhasuru.
- Nyanzvi yekutaura nemutauro: Kuvandudza hunyanzvi hwekutaura nemutauro.
Kurapa kunogona kusanganisira kudya kunoderedza calcium muropa, mishonga yeBP, mapurogiramu edzidzo yakakosha, uye, kana zvichidikanwa, kuvhiyiwa kwetsinga dzeropa kana dzemwoyo. Zvese izvi zvinosarudzwa nachiremba wako .
Chii chaunogona kuita semubereki?
Zvakajairika kuti unzwe wakaremerwa kana ukaona kuti mwana wako ane chirwere cheWilliams. Asi chokwadi ichi chichakubatsira.
- Ipa mwana wako rudo rwakawanda: rega aongorore nyika zvichienderana nehunyanzvi hwake uye kumhanya kwake.
- Gara uchisangana navanachiremba nguva dzose: Gara uchiongororwa nachiremba kuti utarise hutano hwemwana wako.
- Tsvaga rubatsiro rwakawedzerwa kuchikoro: Taura nevadzidzisi vechikoro nemukuru wechikoro nezvezvirongwa zvakakosha zvinodiwa pakudzidza kwemwana wako.
- Wana ruzivo: Dzidza zvakawanda sezvaunokwanisa nezvenyaya iyi kuti ugone kutsigira mwana wako nemazvo.
- Batana nevamwe: Taura nevamwe vabereki vane vana vakaita seizvi. Bvunza chiremba wako nezvemapoka ekutsigirana.
- Fungawo nezvako: Chengetedza hutano hwako hwepfungwa nehwemuviri uku uchitarisira mwana wako. Kana uchinzwa kuneta, usazeza kukumbira rubatsiro.
| Nguva yekutsvaga mazano ekurapa | |
|---|---|
| Ona chiremba nguva dzose. | Enda kuEmergency Treatment Unit (ETU) yechipatara nekukasika. |
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Kana muine kusava nechokwadi kana kutya nezvemwana wenyu, musavaregeredza. Munonyatsoziva mwana wenyu. Saka tsvagai rubatsiro rwechiremba nekukasika.
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheWilliams hachisi mhosva yaamai kana baba. Kuchinja kwemajini kunoitika netsaona.
- Vana vane chirwere ichi vanogona kuratidza hunhu hwakadai sehunhu hwakasiyana hwechiso, hunhu hune hushamwari, matambudziko ekudzidza, uye matambudziko emwoyo.
- Kunyange zvazvo pasina mushonga wakakwana weizvi, kune mishonga inoshanda zvikuru yekurapa zviratidzo.
- Nerudo nerutsigiro rwevanachiremba vane hunyanzvi, varapi, vadzidzisi, nevabereki, vana ava vanogona kurarama hupenyu hunobudirira uye hunofadza.
- Kana uine zvinokunetsa nezvemwana wako, usambozviregeredza uye taura nachiremba wako nekukasika.
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