Mufaro waunonzwa paunotarisa mwana wako achangoberekwa hautsananguriki, handiti? Asi zvino, paunonzwa nezvedzimwe bvunzo dzinoitwa kuchipatara mushure mekunge mwana aberekwa, unonzwa kutya uye kuda kuziva. Imwe bvunzo yakadaro ndeye PKU test. Ungave usina kunzwa nezvezita iri. Asi iyi bvunzo inokosha zvikuru. Nhasi tiri kutaura nezvechirwere ichi chisingawanzoitiki chinonzi PKU, asi kana chikaonekwa nekukurumidza, chinogona kudzorwa zvizere uye mwana anogona kurarama hupenyu hwakanaka.
Zvichitaurwa zviri nyore, chii chinonzi PKU (Phenylketonuria)?
PKU, kana kuti Phenylketonuria, chirwere chisingawanzoitiki chemajini . Chinotorwa kubva kuvabereki. Mwana ane chirwere ichi haakwanise kugaya zvakanaka, kana kuputsa, amino acid phenylalanine, inowanikwa muzvikafu zveprotein zvatinodya.
Funga nezvemiviri yedu sefekitori hombe. Chikafu chatinodya ndicho chinhu chatinoisa mairi. Zvinhu izvi zvinoshandiswa nevashandi vadiki vanonzi maenzymes kugadzira zvinhu zvinodiwa nemiviri yedu. Mwana ane PKU haana kana kugadzirwa kweenzyme yakakosha inonzi phenylalanine hydroxylase (PAH), iyo inoputsa phenylalanine.
Saka chii chinoitika? Phenylalanine, inowanikwa kubva mumukaka wemuzamu uye gare gare kubva muzvikafu zvinodyiwa nemwana, inotanga kuungana muropa pachinzvimbo chekubviswa mumuviri. Kana huwandu hwephenylalanine hunoungana nenzira iyi hukawedzera, hunova chepfu kuuropi hwemwana . Kana hukasarapwa, izvi zvinogona kukuvadza uropi uye kukonzera matambudziko akakomba akadai sekuremara kwepfungwa uye kunonoka kukura.
Asi chinhu chakanakisa apa ndechekuti munyika dzakawanda, kusanganisira Sri Lanka, zvipatara zvinoitisa bvunzo iyi yePKU pamwana wese anozvarwa. Nokudaro, chirwere ichi chinogona kuzivikanwa nekukurumidza. Sezvo kurapwa kuchigona kutanga kana changoonekwa, mwana ane mukana wekukura zvakanaka uye zvine hutano, achidzivirira zviratidzo zvakakomba kuti zvisaitike.
Ndezvipi zviratidzo zvePKU?
Mwana ane PKU anotaridzika kunge ane hutano hwakanaka pakuzvarwa. Saka, pakutanga, panogona kunge pasina shanduko dzinoonekwa. Kana akasarapwa, zviratidzo zvinotanga kuoneka pakati pemwedzi mitatu kusvika mitanhatu yekuzvarwa. Munguva iyi, unogona kuona kunonoka kudiki mukukura kwemwana wako.
Kana mwana ava negore rimwe chete, kana akasarapwa, zviratidzo zvinotevera zvinogona kuoneka.
| Chiratidzo | Tsananguro |
|---|---|
| Kunhuhwirira kusinganzwisisike | Kunhuhwirira kusinganzwisisike, kwakasviba kunobva mukufema kwemwana, ziya, kana weti. |
| Kuchinja kwemavara | Ganda remwana, bvudzi, nemaziso ake zvine ruvara rwakajeka kana tichienzanisa nevamwe vemumhuri. |
| Zvirwere zveganda | Zvirwere zveganda zvakaita se eczema. |
| Kunonoka kukura | Kurema nekukwirira hazviwedzere zvichienderana nezera (Kunonoka kukura). |
| Zvimwe zvinhu | Zviratidzo zvakaita sekurutsa, kuda kurutsa, uye kudedera. |
| Zviratidzo zvakakomba zvinogona kuitika kana zvikasarapwa | |
| Matambudziko emaitiro | Kugara uchingotenderera-tenderera, maitiro asina hanya, uye kuedza kuzvikuvadza. |
| Kusagadzikana | Kugara wakanyanya kushanda zvekuti haugone kugara panzvimbo imwe chete. |
| Kubatwa nepfari | Mamiriro ezvinhu akafanana nepfari . |
Kubata pamuviri kunokanganisa sei amai vane PKU?
Iyi inyaya inokosha zvikuru. Kana mukadzi ane PKU akava nepamuviri uye chirwere chake chePKU chikasadzorwa panguva iyoyo, zvinogona kukanganisa mwana ari mudumbu. Kuwedzera kwe phenylalanine muropa raamai kunogona kukuvadza mwana.
Izvi zvinowedzera njodzi yekubuda pamuviri uye zvinogona kukonzera matambudziko akasiyana-siyana kumwana asati aberekwa.
- Chirwere chemwoyo chekuzvarwa nacho
- Kuchinja kwechimiro chechiso
- Kuberekwa kwakaderera
- Musoro mudiki (microcephaly)
Asi usatya. Kana uine PKU, taura nachiremba wako uye tevera kudya kwakakosha panguva yese yekuzvitakura kwako, iwewo unogona kuva nemwana ane hutano hwakakwana .
Sei PKU ichikura? Chii chinokonzera?
Sezvatakambokurukura, PKU chirwere chemajini. Chinokonzerwa nekuchinja kwemajini kunonzi `PAH` mumuviri wedu. Iri jini re`PAH` rinorayira muviri wedu kugadzira enzyme inoputsa phenylalanine. Kana paine kuchinja kwemajini, enzyme iyoyo haigadzirwe, kana kuti panenge paine chikanganiso pakugadzwa kwayo.
Chirwere ichi chinogara nhaka nenzira ye autosomal recessive pattern. Zvichitaurwa zviri nyore, zvinoti:
Kuti mwana awane chirwere ichi, anofanira kugamuchira kopi imwe chete yejini rakachinjwa kubva kuna amai nababa vake . Kana vakawana jini iri kubva kumubereki mumwe chete, mwana haazove nechirwere ichi. Zvisinei, mubereki iyeye anogona kunge ari mutakuri wechirwere ichi. Izvi zvinoreva kuti vangasave nezviratidzo, asi vanogona kupa jini iri kuvana vavo mune ramangwana.
Vanachiremba vanoongorora sei PKU?
Kuziva PKU kwave nyore zvikuru nekuda kwekuongororwa kwevana vacheche.
Pakati pemaawa makumi maviri nemana kusvika makumi manomwe nemaviri mushure mekuzvarwa kwemwana wenyu, chiremba kana mukoti wepachipatara achabaya chitsitsinho chemwana wenyu netsono diki uye otora madonhwe mashoma eropa pakadhi rakakosha. Izvi zvinonzi 'kuongororwa kwechitsitsinho.' Sample yeropa iyi inoshandiswa kutarisa huwandu hwephenylalanine muropa remwana wenyu.
Kana huwandu hwe phenylalanine muropa hwakakwira, kuongororwa kweropa neweti kunoenderera mberi kuti zviongororwe. Dzimwe nguva, bvunzo dzemajini dzinogona kuitwa kuti paonekwe shanduko chaiyo yemajini inokonzera chirwere ichi.
Ndeipi mishonga yePKU?
Hapana mushonga wePKU. Zvisinei, chirwere ichi chinogona kurapwa zvakanaka muhupenyu hwese . Zviratidzo zvinogona kudzoka kana kurapwa kukamiswa. Kurapa kukuru kudya kwakakosha uye dzimwe nguva mishonga.
1. Kudya kwakakosha kushoma mune phenylalanine
Ichi ndicho chikamu chakakosha uye chikuru chekutarisira PKU.Munhu ane PKU anofanira kudya chikafu chisina phenylalanine kweupenyu hwake hwese.
Sezvo phenylalanine iri chikamu chemapuroteni, chikafu chine mapuroteni akawanda chinofanira kuderedzwa .
- Nyama, hove, huku
- Mazai
- Mukaka nezvigadzirwa zvemukaka (yogati, chizi)
- Zviyo zvakaita senyemba nenyemba
- Zvigadzirwa zvesoya
- nzungu
Zvisinei, sezvo muviri uchida huwandu hwakati hweprotein kuti ukure, unofanira kutaura nenyanzvi yezvekudya kuti aone kuti ungadya mapuroteni akawanda sei. Ivo vachagadzira chirongwa chekudya chine hutano chakakodzera mwana/munhu ane PKU.
Zvakakosha: 'Aspartame' inonaka yekugadzira inofanira kudziviswa zvachose. Aspartame inopwanyika mumuviri kuti igadzire phenylalanine. Zvinwiwa zvakawanda, chikafu, chingamu dzinotsenga, mamwe mavhitamini, uye manyuchi ekukosora akanyorwa kuti 'diet' kana kuti 'isina shuga' zvinogona kunge zvirimo. Saka, zvakakosha kuverenga zvakanyorwa papepa racho nokungwarira usati wadya kana kunwa chero chinhu.
Vana vacheche vane PKU vanofanira kutanga kushandisa mushonga usina phenylalanine pakarepo.
2. Mishonga
Kune vamwe varwere vane PKU, mishonga inogona kubatsira pamusoro pekudya. Iyi mishonga inofanira kushandiswa chete kana chiremba akurudzira.
- Sapropterin dihydrochloride (Kuvan®): Mushonga uyu unobatsira vamwe varwere kuputsa phenylalanine mumuviri. Zvisinei, unofanira kuramba uchitevera kudya uku uchitora mushonga uyu.
- Pegvaliase (Palynziq®): Uyu mushonga unokurudzirwa kuvarwere vakuru. Unopa muviri enzyme inopwanya phenylalanine.
Zvinokwanisika here kurarama hupenyu hwakajairika nePKU?
Ehe, ndizvozvo chaizvo! Kunyangwe PKU iri chirwere chehupenyu hwese, kana ikaonekwa nekukurumidza uye ikatarisirwa nemazvo, kukanganisa kwayo hutano kunogona kuderedzwa.
Kutevera kudya kusina mapuroteni akawanda kwehupenyu hwako hwese kunogona kuoma dzimwe nguva. Asi hausi wega. Chiremba wako nenyanzvi yezvekudya vanogara varipo kuti vakubatsire. Zvakare, kubatana nemapoka ekutsigirana nevamwe vanhu vane PKU kunogona kukubatsira kugovana ruzivo uye kuwana simba.
Ungave wakaona mabhodhoro ezvinwiwa zve'diet' uye mapaketi echewing gum ane yambiro inoti "Phenylketonurics: Ine phenylalanine." Izvi ndezvekuzivisa vanhu vane PKU kuti chigadzirwa ichi chine aspartame, ine phenylalanine.
Kana iwe kana mhuri yako muchinetseka nezvechirwere chenyu chePKU, musazeza kutaura nenyanzvi yezveutano hwepfungwa . Hutano hwepfungwa hwakakosha sehutano hwemuviri.
Mharidzo Yekuenda Nayo Kumba
- PKU chirwere chinorapika uye chinodzoreka mumajini. Usachitya zvisina kufanira.
- Kuonekwa kwechirwere ichi nekukurumidza kuburikidza nekuongororwa kwevana vacheche ndiyo kiyi yekurapwa kunobudirira.
- Kurapa kukuru ndekutevera kudya kwakakosha kushoma mune phenylalanine kweupenyu hwese.
- Kana uchitenga chikafu nezvinwiwa zvakanyorwa kuti 'Diet' kana kuti 'Sugar-free', gara uchitarisa kuti zvine aspartame here.
- Tevedzera mirairo yakapihwa nachiremba wako nenyanzvi yezvekudya. Gara uchitaurirana navo nguva dzose.
- Kana mwana kana munhu ane PKU akatarisirwa zvakanaka, anogona kurarama hupenyu hune hutano hwakanaka, hwakajairika, uye hunofadza.
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