Mwana wako mudiki akanga asina simba, asina hupenyu, uye ainetseka nekuyamwisa paakaberekwa? Asi paakakura zvishoma, ava nemakore maviri kana matatu, akatanga here kuratidza chido chisina kujairika uye kushaya chido chekudya? Ungangove uchinetseka uye uchitya nekuchinja uku. Nhasi tiri kutaura nezvechirwere chemajini chisingawanzoonekwi chinoratidza zviratidzo izvi, izvo vanhu vazhinji munyika medu vasati vanzwa nezvazvo, asi zvakakosha kuziva nezvazvo. Ndiyo Prader-Willi Syndrome.
Chii chinonzi Prader-Willi Syndrome (PWS)?
Zvichitaurwa zviri nyore, chirwere chePrader-Willi (PWS) chirwere chisingawanzoitika kubva pakuzvarwa. Chinokanganisa kugaya kwemuviri kwemwana, maitiro ayo chikafu chatinodya chinoshandurwa kuita simba. Chinokanganisawo kukura kwemwana nemaitiro ake.
Matanho maviri makuru anogona kuonekwa mumamiriro ezvinhu aya.
1. Kukura Kwemwana Ari Mucheche: Tsandanyama dzemwana hadzina hupenyu kana kuti dzine tsandanyama dzisina kusimba. Izvi zvinoita kuti zviome kuyamwa. Mwana anogona kunge aine hope uye ane simba.
2. Mwana Ari Mudiki: Pakati pemakore maviri nematanhatu, chimwe chinhu chakasiyana zvachose chinoitika. Kureva kuti, mwana anotanga kuda kudya zvakanyanya uye zvisingadzoreki. Pasinei nekuti anodya zvakadii, haanzwi kuguta. Kana kudya kwakanyanya uku kukasadzorwa, mwana anogona kufuta zvakanyanya.
Kuwedzera kune zviratidzo zvikuru izvi, mwana anogona kupotsa matanho ekukura anoenderana nezera rake, akadai sekukambaira, kufamba, uye kutaura. Kuyaruka kunogonawo kunonoka. Kana kukasagadziriswa nemazvo, kufuta kunogona kutungamira kumatambudziko anotyisidzira hupenyu akadai sechirwere chemwoyo, chirwere cheshuga, uye sleep apnea.
Ndiani anowana chirwere ichi? Chinowanzoitika sei?
Ichi chirwere chemajini chinogona kukanganisa chero munhu. Chinowanzo kukonzerwa nekuchinja kwemajini kunoitika kana masero ehutachiona aamai nababa aumbwa. Izvi zvinoreva kuti hazvisi nekuda kwemhosva yevabereki. Kashoma, kana mumwe munhu mumhuri akambova nechirwere ichi, pane mukana mudiki wekuti chichapfuudzwa muzvizvarwa nezvizvarwa.
Zvakajairika zvekuti chirwere chePrader-Willi chinobata munhu mumwe chete pavanhu 10,000 kusvika 30,000 pasi rose. Izvi zvinoreva kuti chirwere ichi hachiwanzoitiki.
Ndezvipi zviratidzo zvePrader-Willi syndrome?
Zviratidzo izvi zvinogona kusiyana kubva pamunhu kuenda kune mumwe, asi pane zvimwe zviratidzo zvakajairika. Ngatizviise mumapoka nenzira iyi kuti zvive pachena.
| Rudzi rwehunhu | Zvinhu zvinowanzoonekwa |
|---|---|
| Hunhu hwehucheche (Hucheche) |
|
| Hunhu hune chekuita nechitarisiko chemuviri | |
| Hunhu hwemaitiro uye kukura |
Chinhu chakakosha kurangarira pano ndechekuti kufuta, kunokonzerwa ne `(Hyperphagia)`, kunogona kutungamira kune zvimwe zvirwere zvakawanda zvakakomba zvakaita sechirwere cheshuga nechirwere chemwoyo.
Chii chinokonzera chirwere ichi? Chii chinonzi majini?
Izvi zvakaoma zvishoma, asi ngatiedzei kuzvinzwisisa zviri nyore.
Sero rega rega redu rine ruzivo rwemajini. Tinodaidza machromosome aya kuti. Tinowana machromosome makumi maviri nematatu kubva kuna amai vedu uye makumi maviri nematatu kubva kuna baba vedu. Prader-Willi syndrome inokonzerwa nedambudziko nechikamu chechromosome 15 chatinowana kubva kuna baba vedu.
Pane chimwe chinhu chakakosha chinoitika pano. Chinonzi `(genomic imprinting)`. Zvichitaurwa zviri nyore, mune mamwe majini ari pachromosome 15, kopi yababa inobatidzwa 'on', uye kopi yaamai inobatidzwa 'off'. Iyi 'on', kureva kuti, kopi inoshanda yababa inokosha kuti muviri ushande zvakanaka . MuPWS, kopi iyi inoshanda yababa inorasikirwa nebasa rayo.
Panogona kuva nezvikonzero zvikuru zvitatu zveizvi.
| Chikonzero chemajini | Zvakatsanangurwa zviri nyore |
|---|---|
| Kubviswa kwechromosome | Izvi ndizvo zvinokonzera 70% yevarwere vane PWS. Muchiitiko ichi, chikamu chidiki chechromosome 15, icho chakatorwa kubva kuna baba, chinobviswa. Nokudaro, majini anodiwa haashande. |
| Kusagadzikana kwevabereki kwaamai | Izvi ndizvo zvinokonzera nyaya dzinenge 25% dzePWS. Chinoitika ndechekuti mwana haagamuchire chromosome 15 kubva kuna baba, asi anogamuchira makopi maviri echromosome 15 kubva kuna amai. Sezvo majini akakodzera mumakopi ese ari maviri kubva kuna amai 'asina', hapana majini anoshanda anorasika. |
| Kutamiswa | Izvi hazviwanzoitiki (zvisingasviki 1%). Muchiitiko ichi, chikamu chechromosome 15 chinotsemuka chonamatira kune imwe chromosome. Nekuda kweizvozvo, majini iwayo haagone kushanda zvakanaka. |
Chiremba anoongorora sei chirwere ichi?
Kana ukaenda kunoona chiremba nekuti une hanya nezviratidzo zvemwana wako, chinhu chekutanga chaachaita ndechekuongorora mwana wako zvakakwana. Achanyatsoongorora chitarisiko chake, marongerwo emhasuru dzake, uye maitiro ake. Achakubvunzawo nezvekudya kwake uye kunonoka kwake kukura.
Kana chiremba akafungidzira kuti ane PWS zvichibva pazviratidzo izvi, acharaira kuti aongorore majini kuti zvisimbiswe.Izvi zvinowanzoitwa nekutora ropa remwana uye kuona shanduko dziri muDNA riri mariri .
Inorapwa sei? Hazvigoneke here kuirapa zvachose?
Kutaura zvazviri, hapana mushonga wePrader-Willi syndrome parizvino. Asi musazvidya mwoyo. Kune nzira dzakawanda dzekurapa dzinogona kubatsira kudzora zviratidzo, kudzivirira matambudziko, uye kubatsira mwana wenyu kurarama hupenyu hwakanaka. Zvinangwa zvikuru zvekurapa ndeizvi:
- Kutarisira zvinovaka muviri: Zvishandiso zvakakosha zvakaita semazamu emubhodhoro zvinogona kushandiswa kubatsira mwana wako kunwa mukaka achiri mudiki. Mwana wako paanokura, zvakakosha kupa chikafu chine macalorie mashoma uye chakaringana uye kudzora huwandu hwechikafu chaanodya. Dzimwe nguva, zvingatove zvakakosha kukiya zvinhu zvakaita semakabati nemafiriji kumba.
- Kurapa neMahormone: Homoni yekukura inopiwa kuti ibatsire mwana kukura. Sezvo kuyaruka kuri kufambira mberi, vakomana vangangoda kupihwa testosterone uye vasikana vangangoda estrogen.
- Kurapa Kunotsigira:
- Kurapa muviri: Kunobatsira kusimbisa tsandanyama uye kuvandudza kuenzana.
- Kurapa nemutauro wekutaura: Kunobatsira kukunda matambudziko ekutaura.
- Dzidzo yakakosha: Inopa rutsigiro rwemabasa ekudzidza akagadzirirwa hunyanzvi hwepfungwa dzemwana.
Ramangwana richava rakaita sei kana mwana wangu aine PWS?
Zvakajairika kuti vabereki vanzwe kushamisika uye kutya pavanonzwa nezvechirwere ichi. Asi yeukai, nekuongororwa nekukurumidza uye kurapwa nekutsigirwa, vana vane PWS vanogona kurarama hupenyu hwakajairika.
Ehe, kune matambudziko. Vachada rubatsiro rwakawedzerwa nebasa rechikoro. Vachada rutsigiro rwakati wandei muhupenyu hwavo hwese. Asi vanogonawo kubatsirwa kuti vazvimirire uye kuti vashandise hunyanzvi hwavo zvizere.
Zvakakosha kusangana nenyanzvi yezvekudya kuti mugadzire hurongwa hwekudya hwakakodzera mwana wenyu, uye kutsvaga mazano kubva kumupi wezano wehutano hwepfungwa . Zvakare, kubatana nemapoka ekutsigirana nevamwe vabereki vane ruzivo rwakafanana nerwako kuchave sosi huru yesimba.
Mibvunzo ipi yaunofanira kubvunza chiremba?
Paunoenda kunoona chiremba, usakanganwa kubvunza mibvunzo iyi.
- Chii chandinofanira kuita kuti mwana wangu asanyanye kufuta?
- Mwana anoda kurapwa kupi? Anopihwa sei?
- Ndezvipi zvinetso zvehunhu zvandinotarisira kubva kumwana wangu?
- Pane mapoka ekutsigirana atinogona kusvika nawo kuti atibatsire kurarama nechirwere ichi here?
- Vamwe vese vemhuri yangu vanofanira kuongororwa majini here?
Zvakajairika kunzwa wakaremerwa paunoziva kuti mwana wako ane chirwere chisingawanzoitiki, chisingarapiki. Asi hausi wega. Chikwata chevanachiremba vemwana wako chichakupa rutsigiro nenhungamiro yaunoda. Mwana wako angangoda nguva yakawanda nerubatsiro kupfuura vamwe vana. Asi nekutarisira kwakanaka, mwana wako anogonawo kufara.
Mharidzo Yekuenda Nayo Kumba
- Prader-Willi syndrome (PWS) chirwere chemajini chinoitika netsaona uye hachikonzerwi nekukanganisa kwevabereki.
- Zviratidzo zvepakutanga zvinosanganisira kushaya simba kwetsandanyama uye kuoma kwekuyamwisa. Gare gare, chido chekudya chisingadzoreki chinotanga.
- Dambudziko guru rinotarisana nemamiriro ezvinhu aya nderekudzora kudya uye kudzivirira kufuta pamwe nematambudziko anokonzerwa nako.
- Kunyange hazvo pasina mushonga wakakwana weizvi, kutarisirwa kwakakodzera, kurapwa, uye rutsigiro muhupenyu hwese zvinogona kubatsira mwana kurarama hupenyu hwakazara.
- Kana muine zvinokunetsai nezvekukura kana maitiro emwana wenyu, taurai nachiremba wenyu nekukasika. Kuonekwa kwechirwere ichi nekukurumidza kwakakosha kuti kurapwa kubudirire.
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