Ndinonzwisisa kuti unonzwa kusuruvara, kushamisika, uye kushaya simba sei paunoona kuti mwana wako ane chirwere chisingawanzoitiki chinonzi Wolf-Hirschhorn syndrome. Ungangoerekana wava nemibvunzo yakawanda mupfungwa dzako, yakaita sekuti, 'Sei izvi zvakaitika kumwana wangu?', 'Izvi zvakaitika sei?', 'Ndoita sei izvozvi?' Usafunge kuti uri wega panguva ino. Ngatitaurei nezvese zvakajeka uye zviri nyore.
Chii chinonzi Wolf-Hirschhorn Syndrome?
Zvichitaurwa zviri nyore, chirwere cheWolf-Hirschhorn chirwere chisingawanzoitiki chinoberekwa mwana nacho. Chinonziwo `(4p-syndrome)`. Masero edu emuviri ane chimwe chinhu chinonzi machromosomes . Funga nezvazvo semabhuku ane gwaro rakazara rekuti muviri wedu unofanira kuvakwa sei. Kune machromosomes aya makumi mana nematanhatu, ari mumapaya makumi maviri nematatu.
Muchirwere cheWolf-Hirschhorn, chidimbu chidiki kwazvo chechromosome 4 hachipo. Zvakafanana nechidimbu chidiki chepeji riri mupurani chiri kubvaruka pakona. Kunyangwe chidimbu chidiki chechromosome chinogona kukanganisa kukura kwemwana kwakajairika. Hunhu uye kuoma kwezviratidzo zvinosiyana kubva pamwana kuenda kumwana, zvichienderana nehukuru hwechidimbu chisipo.
Chii chiri kukonzera izvi? Ndiyo mhosva yevabereki here?
Uyu mubvunzo unobvunzwa nevabereki vazhinji. Chinhu chakakosha chaunofanira kunzwisisa pano ndechekuti kazhinji, ichi hachisi chinhu chinobva kuvabereki, uye hachisi chinhu chakakonzerwa nevabereki.
Kutsemuka kwemakromosomu uku kunowanzoitika panguva yekupatsanurwa kwemasero mushure mekunge mwana abatwa mudumbu. Vanachiremba havasati vaziva kuti sei shanduko iyi yemajini ichiitika kamwe kamwe.
Zvisinei, mune dzimwe nguva dzisingawanzoitiki, chirwere ichi chinogona kugarwa nhaka kubva kune mumwe wevabereki. Izvi zvinonzi `balanced translocation` . Izvi zvinoreva kuti ma chromosome maviri kana anopfuura ari muna amai kana baba akatyoka uye akachinja nzvimbo panguva yekukura kwavo. Asi nekuda kwekuti akaenzana, amai kana baba havaratidzi zviratidzo. Zvisinei, kana munhu akadaro aine mwana, pane mukana mukuru wekuti chromosome isina kuenzana ichapfuudzwa kumwana. Kana uchida, unogona kuongororwa majini kuti uone kana iwe kana mumwe wako mune `balanced translocation`. Taura nachiremba wako kuti uwane rumwe ruzivo nezveizvi.
Ndezvipi zviratidzo zvinogona kuonekwa pamwana?
Chirwere cheWolf-Hirschhorn chinogona kukanganisa nhengo dzakasiyana dzemuviri. Ndokusaka paine zviratidzo zvakawanda. Haasi mwana wese ane zviratidzo izvi. Zviratidzo zvikuru chitarisiko chechiso chakasiyana, kunonoka kukura, kuremara kwepfungwa, uye pfari.
Ngatitarisei zviratidzo izvi zvakajeka mutafura.
| Chikamu chakanganiswa | Zvinhu zvakajairika zvakaonekwa |
|---|---|
| Zvimiro zvechiso |
|
| Kukura uye muviri | |
| Sisitimu yetsinga uye njere | |
| Nhengo dzemukati |
Nzira yekuongorora chirwere ichi sei?
Dzimwe nguva, chiremba wako anogona kufungidzira kuti chirwere ichi chakakonzerwa nezvimwe zvinhu zvemuviri wemwana wako zvinoonekwa panguva yekuongororwa kweultrasound panguva yekuzvitakura. Zvakare, kumwe kuongororwa kweropa kwakakosha (kuongorora DNA pasina masero) kuripo iye zvino kunogona kupa ruzivo nezvematambudziko echromosome.
Asi yeukai, izvi kungori kuongororwa chete. Hazvina chokwadi kuti mwana ane chirwere ichi nekuda kweruzivo rwakakwana.
Kuti kusimbiswe kuongororwa kwacho chaiko, bvunzo dzemajini dzakanangana dzinodiwa. Pakati padzo, chinonyanya kukosha ibvunzo ye `fluorescence in situ hybridization (FISH)` . Izvi zvinogona kuona kurasikirwa kwechikamu chechromosome yechina nekururamisa kunopfuura 95%. Bvunzo iyi inogona kuitwa mwana asati aberekwa kana kuti mushure mekunge aberekwa.
Kana mwana wenyu akaonekwa kuti ane chirwere cheWolf-Hirschhorn, chiremba wenyu angangokurudzira kuti aedze zvimwe zvinhu, zvakaita sekuskena, kuti aone kuti ndedzipi dzimwe nzvimbo dzemuviri dzine chirwere ichi.
Inorapwa sei?
Unganzwa kusuruvara kunzwa izvi, asi chokwadi ndechekuti hapana mushonga wakawanikwa unogona kurapa chirwere cheWolf-Hirschhorn zvachose.
Asi izvi hazvirevi kuti hapana chatinogona kuita. Chinangwa chikuru chekurapa ndechekudzora zviratidzo zvemwana uye kumubatsira kurarama hupenyu hwakanaka.
Nekuti mwana wese akasiyana, hurongwa hwekurapa hunosiyana kubva pamwana kuenda kune mumwe. Kazhinji, hurongwa uhwu hwekurapa hunosanganisira zvinotevera:
| Nzira yekurapa | Chinangwa |
|---|---|
| Kurapa Kwemuviri uye Kurapa Kwebasa | Kusimbisa tsandanyama, kuwedzera kufamba, uye kudzidzidzisa kuita mabasa ezuva nezuva dziri dzoga. |
| Kurapa Mishonga | Kupa mishonga, kunyanya yekuderedza pfari. |
| Kuvhiya | Kugadziriswa kwezvirema zvekuzvarwa nazvo zvakaita semwoyo kana uropi. |
| Dzidzo Yakakosha | Kupa dzidzo inoenderana nehunyanzvi hwemwana hwekudzidza. |
| Mazano eGenetic | Kupa nhengo dzemhuri kunzwisisa chirwere ichi uye kutaura nezvenjodzi dziripo mukurera vana mune ramangwana. |
Kuchengeta mwana uyu ibasa guru rechikwata. Zvinoda rubatsiro rwevanhu vazhinji, kusanganisira vanachiremba vevana, vanachiremba vemuviri, uye vanachiremba vekutaura.
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheWolf-Hirschhorn chirwere chisingawanzoitiki chemajini. Chinowanzokonzerwa pasina mhosva yevabereki.
- Zviratidzo uye kuoma kwemwana mumwe nemumwe zvakasiyana.
- Kunyangwe chirwere ichi chisingarapike zvachose, kune nzira dzakawanda dzekurapa nadzo zviratidzo uye kupa mwana hupenyu huri nani.
- Kuti izvi zviitike, rutsigiro rwechikwata chevanachiremba nevarapi rwakakosha.
- Kuchengeta mwana akadai idambudziko. Semubereki, zvakakosha kuti utarisire hutano hwako hwepfungwa uye uwane rutsigiro rwaunoda.
- Kana muine mibvunzo kana zvinokunetsai nezvechirwere chemwana wenyu, taurai pachena nachiremba wenyu.
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