Semubereki, pamwe munogara muchifunga nezvehutano nekukura kwemwana wenyu. Dzimwe nguva, tinosangana nematambudziko asingawanzoitiki atisinganzwi zvakawanda nezvawo. Chimwe chezvirwere zvisingawanzoitiki asi zvakakosha zvemajini iCornelia de Lange Syndrome, kana kuti (CdLS) muchidimbu. Tisati tatya izvi, ngatizvitaurei zviri nyore uye zvakajeka tonzwisisa kuti chii.
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Chii chaizvo chinonzi Cornelia de Lan's syndrome (CdLS)?
Zvichitaurwa zviri nyore, (CdLS) chirwere chemajini chisingawanzoitiki chinowanikwa pakuzvarwa. Chinogona kukanganisa nhengo dzinoverengeka dzemuviri wemwana. Kutaura chokwadi, chinokonzerwa nekuchinja (kuchinja) kwemajini akati wandei ane chekuita nekukura kwemuviri wedu.
Dambudziko iri rinogona kuonekwa mumhando mbiri huru. Rimwe imhando yechirwere chisina kunyanya kuomarara , uye rimwe imhando yechirwere chekare . Kazhinji, kana tichitaura nezvechirwere ichi, tinenge tichitaura nezvechirwere chekare. Zvisinei, vana vane chirwere chisina kunyanya kuomarara vanogonawo kuratidza zviratidzo zvakafanana, asi zvishoma.
Vacheche vane CdLS vanowanzo berekwa vari vadiki muhuremu nehukuru. Musoro wavo unogona kunge uri mudikiwo pane wemwana akajairwa. Mukurapa, izvi zvinonzi microcephaly . Kuwedzera kune shanduko idzi dzemuviri, panogona kunge paine mamwe matambudziko epfungwa nemaitiro. Vamwe vana vanogonawo kunonoka kutaura.
Ndezvipi zviratidzo zvechirwere ichi?
Zviratidzo zve CdLS zvinogona kuonekwa mwana asati aberekwa kana kuti mushure mekunge aberekwa. Pane zvimwe zvinhu zvinowanzoitika pakuonekwa kwevana vane chirwere ichi. Vanogonawo kuona matambudziko mukugaya chikafu uye kukura kwepfungwa. Ngatizvitarisei mutafura.
| Rudzi rwehunhu | Zvinhu zvekuona |
|---|---|
| Hunhu hukuru hwemuviri | |
| Musoro nechiso | - Musoro mudiki pane wakajairika (Microcephaly) - Eyes refu - Eyes dzakatetepa, dzakatetepa kana kuti dzakakora - Mutsetse wevhudzi wepazasi - Mhino pfupi yakatenderera, yakakotama - Miromo yakatetepa, yakatetepa - Mazino nemaziso zviri kure kure |
| Dzimwe nhengo dzemuviri | - Kukura kwebvudzi remuviri zvakanyanya - Matambudziko nekukura kwemaoko nemakumbo - Zvirwere zvemwoyo - Mukanwa wakachekwa - Cryptorchidism (machende asina kusimba muvakomana) |
| Matambudziko eMudumbu | |
| Matambudziko akajairika | - Kuzvimba - Manyoka - Kurutsa - Kuzadza dumbu - Kurasikirwa nechido chekudya dzimwe nguva - Kudzoka kweacid mudumbu (GERD) |
| Matambudziko epfungwa nemaitiro | |
| Maitiro nekukura | - Kunonoka kukura - Kuremara pakudzidza - Matambudziko ekuzvibata - Dambudziko rekushaya hanya zvakanyanya (ADHD) - Kunetseka - Zvirwere zveAutism (Autism) |
Pamusoro pezvo, vamwe vana vanogonawo kuva nematambudziko ekunzwa nekuona (semuenzaniso, myopia).
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CdLS chirwere chinogona kukanganisa chero munhu, zvisinei nerudzi kana kuti murume kana mukadzi. Kazhinji, chinokonzerwa nekuchinja kwemajini kunoitika pasina chikonzero uye hakuna kumbobvira kwaonekwa mumhuri.
Kusvika pari zvino, majini angangoita manomwe akawanikwa anokonzera chirwere che 'CdLS'. Mwana ane chirwere ichi anogona kuchinja mune rimwe kana akawanda emajini aya. Hunhu uye kuoma kwechirwere zvinoenderana nekuti shanduko yemajini inoitika mune ripi jini uye sei. Semuenzaniso, vana vane shanduko mumajini (NIPBL) vanogona kunge vaine zviratidzo zvakanyanya.
Chinhu chakakosha ndechekuti kana mwana mumwe chete mumhuri aine CdLS, mukana wekuti mwana anotevera ave nayo wakaderera zvikuru (anenge 1-2%).
Zvisinei, mune dzimwe nguva dzisingawanzoitiki, kana mubereki mumwe chete aine chirwere chinonzi CdLS, pane mukana we50% wekuti mwana achachigara nhaka. Izvi zvinonzi (Autosomal dominant) nhaka.
Nzira yekuziva sei chirwere ichi?
Kana uchifungidzira kuti mwana wako ane zviratidzo izvi, danho rako rekutanga rinofanira kunge riri rekuona chiremba wevana .
Chiremba achatanga aongorora mwana zvakakwana uye obvunza nezvenhoroondo yehutano hwemwana wako nemhuri yake. Vachanyatsoongorora zviratidzo zvemuviri zvine chekuita neCdLS.
Zvadaro, kuongororwa kwemajini kunogona kukurudzirwa kusimbisa chirwere chacho. Izvi zvinonyanya kutarisa shanduko mumajini aya:
- NIPBL
- SMC1A
- RAD21
- SMC3
- HDAC8
Munguva yekuzvitakura, kuongororwa kweultrasound pakati pemavhiki 18-20 dzimwe nguva kunogona kuona kusarongeka pachiso chemwana kana makumbo. Izvi zvinogona kupa ruzivo nezveCdLS.
Inorapwa sei?
Zvakakosha kuziva izvi: Hapana mushonga chaiwo unogona kurapa CdLS zvachose. Zvisinei, izvozvo hazvirevi kuti hapana chatinogona kuita. Chinangwa chikuru chekurapa ndechekugadzirisa zviratidzo zvemwana uye kumubatsira kurarama hupenyu hune hutano uye hunofadza sezvinobvira.
Chiremba mumwe chete haana kukwana pakuita izvi. Chikwata chenyanzvi nevarapi vanobva kumatunhu akasiyana-siyana vanoungana kuti vagadzire hurongwa hwakanakisa hwekurapa mwana. Chikwata ichi chinogona kusanganisira vanhu vakaita se:
- Vanachiremba vevana
- Vanachiremba vemwoyo - kune zvirwere zvemwoyo
- Varapi vemuviri - kuvandudza kufamba kwemuviri nekusimbisa tsandanyama
- Nyanzvi dzezvirwere zvekutaura - dzematambudziko ekutaura nekutaurirana
- Vanachiremba vezvematumbu - kune matambudziko emudumbu
- Nyanzvi dzemaziso nevarapi vezvirwere zve ENT
Mune zvimwe zviitiko, kuvhiyiwa kungadiwa kugadzirisa dambudziko remukanwa kana kuti chirwere chemwoyo. Mishonga inogonawo kupiwa pamatambudziko akadai seacid yemudumbu. Sarudzo dzese idzi dzinoitwa navanachiremba vanoongorora mwana wako.
Ungati chii nezveramangwana?
Unganzwa kufara kana ukanzwa izvi. Vana vazhinji vane CdLS vanorarama hupenyu hwakajairwa. Zvisinei, nekuti vane hurema hwepfungwa, vanoda rutsigiro nekutarisirwa muhupenyu hwavo hwese, kunyangwe pavanenge vava vakuru. Izvi zvinoreva kuvapa nzvimbo yakachengeteka yekugara nekushanda, ukuwo vachivapa rusununguko.
Zvisinei, mune dzimwe nguva dzisingawanzoitiki, mamwe matambudziko anogona kupfupisa makore ekurarama. Zvikuru sei, pneumonia inodzokororwa, matambudziko emwoyo anokonzerwa nekuzvarwa nawo, uye matambudziko makuru ekugaya chikafu zviri panjodzi kana zvikasaongororwa zvakanaka uye zvikarapwa.
Saka, chinhu chakakosha ndechekuchengeta mwana wako ari pasi pemazano akakodzera ekurapa uye kutarisirwa. Kana ukadaro, mwana wako achava nemukana wakanaka wekurarama hupenyu hurefu uye hunofadza.
Mharidzo Yekuenda Nayo Kumba
- Cornelia de Lange Syndrome (CdLS) chirwere chisingawanzoitiki chinowanikwa kubva pakuzvarwa.
- Zviratidzo zvinogona kusiyana zvikuru kubva pamwana nemwana. Zvimwe zvinogona kunge zvisina kusimba, nepo zvimwe zvingave nezviratidzo zvakakomba.
- Kunyange hazvo pasina mushonga chaiwo weizvi, kugadzirisa zviratidzo zvinogona kubatsira mwana kurarama hupenyu huri nani.
- Rutsigiro rwechikwata chevanachiremba vane hunyanzvi nevarapi rwakakosha pakuita izvi.
- Kana muine kusava nechokwadi nezvemwana wenyu, musanonoka uye bvunzai chiremba wevana. Nekutarisirwa kwakanaka nerudo, vana ava vanogonawo kurarama vachifara.
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