Izuva rinofadza zvikuru apo mwana achangoberekwa anodzoka kumba. Mufaro mukuru kuna amai ndekuyamwisa mwana wavo. Nekuti tinoziva kuti mukaka wemuzamu ndicho chikafu chakanakisa chemwana. Unopa zvese zvinovaka muviri zvinodiwa nemwana, pamwe nezvinhu zvakawanda zvakaita semasoja anomudzivirira kubva kuzvirwere. Asi fungidzira, mushure mekuyamwisa mwana wako, mukati memazuva mashoma mwana anotadza kunwa mukaka, anoramba achirutsa, anoshanduka kuita yero, uye anofa. Achiona chimwe chinhu chakadai, chero amai kana baba vanotya zvikuru. Dzimwe nguva chikonzero cheizvi chirwere chisingawanzoitiki icho vanhu vazhinji vasati vatombonzwa nezvacho. Nhasi tiri kutaura nezvechimwe chirwere chakadai, Galactosemia.
Zvichitaurwa zviri nyore, chii chinonzi Galactosemia?
Zvichitaurwa zviri nyore, Galactosemia chirwere chisingawanzoitiki, chinokonzerwa nekushanda kwemuviri wedu. Vana vane chirwere ichi havakwanise kushandura galactose, rudzi rweshuga inowanikwa mumukaka wavanonwa, kuita simba, zvichireva kuti havagone kuigaya.
Zvino ungave uchishamisika kuti galactose iyi chii. Mukaka watinonwa, kureva mukaka wemuzamu nemukaka weupfu, une rudzi rweshuga inonzi lactose. Molekyu iyi inonzi lactose inoumbwa nemamwe mashuga maviri ari nyore anonzi glucose negalactose. Ma enzyme ari mumuviri wemwana ane hutano anopwanya lactose iyi oshandura chikamu chegalactose kuita simba.
Zvisinei, mumwana ane Galactosemia, enzyme inoshandura galactose kuita simba haishande nemazvo, kana kuti haigadzirwe zvachose . Zvakafanana nemuchina uri mufekitori uri kuparara. Zvadaro, galactose isina kumedzwa inoungana muropa remwana. Galactose inoungana nenzira iyi ine chepfu zvikuru kumwana achangoberekwa. Kana ikasarapwa, inogona kutoisa upenyu hwemwana panjodzi.
Chii chinokonzera chirwere ichi?
Galactosemia chirwere chinogara nhaka . Izvi zvinoreva kuti chinopfuudzwa kumwana kuburikidza nemajini. Kuti mwana awane chirwere ichi, mwana anofanira kugamuchira majini asina kunaka kubva kuna amai nababa.
Kana mubereki mumwe chete aine jini rakakanganisika, anonzi mutakuri. Kazhinji murwere haaratidzi zviratidzo. Zvisinei, kana vaviri vatakuri vakabatana, pane mukana wekuti mwana wavo achaita chirwere ichi.
Kune mhando nhatu huru dze galactosemia.
| Rudzi rwechirwere (Rudzi) | Tsananguro |
|---|---|
| Rudzi I - Classic Galactosemia | Urwu ndirwo rudzi rwakajairika uye rwakanyanya kuoma, runobata mwana mumwe chete pavana 30,000 kusvika 60,000. |
| Rudzi rwechipiri - Kushaikwa kweGalactokinase | Rudzi urwu nerudzi rwechitatu hazviwanzoitiki uye zviratidzo zvacho zvishoma pane rudzi rwekare. |
| Rudzi rwechitatu - Kushaikwa kweGalactose epimerase | Rudzi urwu runowanzoonekwawo zvisingawanzoitiki, uye kuoma kwezviratidzo kunogona kusiyana kubva pamunhu kusvika pamunhu. |
Mwana wako ane zviratidzo izvi zvakare here?
Mwana ane chirwere cheClassic Galactosemia (Type I) anoita seaine hutano hwakanaka pakuzvarwa. Zviratidzo zvinotanga kuoneka mazuva mashoma mushure mekunge mwana atanga kunwa mukaka wemuzamu kana lactose.
Unofanira kungwarira zvikuru nezvezviratidzo izvi, nekuti kutsvaga rubatsiro rwechiremba kana ukangozviona kunogona kuponesa hupenyu hwemwana.
Zviratidzo zvinoonekwa pakutanga
- Kusada kunwa mukaka uye kusakumbira.
- Kuramba uchirutsa mushure mekunwa mukaka kana nguva pfupi mushure mekunwa mukaka.
- Kutsvuka kweganda uye kuchena kwemaziso (Jaundice) .
- Manyoka .
- Kukundikana kukura zvakanaka uye kukura zvisina kunaka kwemwana.
- Mwana anogara akarara uye asina hupenyu.
Migumisiro yenguva refu kana ikasarapwa
Kana chirwere ichi chikasaonekwa uye chikarapwa nekukurumidza, galactose inoungana muropa inotanga kukuvadza nhengo dzakasiyana-siyana mumuviri wemwana.
- Matumbu emusoro (cataracts) .
- Kuwanikwa kwezvirwere zvakakomba kakawanda.
- Kukuvara kwechiropa uye kukura kwechiropa.
- Kukuvara kweitsvo .
- Kukuvadzwa kwekukura kwehuropi , zvichikonzera matambudziko ekukura akadai sekutadza kudzidza.
- Vamwe vana vanogona kunge vaine matambudziko ekufamba nemaoko avo.
- Kana ari musikana, mazamu anogona kutadza kushanda zvakanaka mushure mekuyaruka. Nekuda kweizvozvo, vanowanzo rasikirwa nekukwanisa kubereka vana.
Izvi zvinoongororwa sei uye zvinorapwa sei?
Nerombo rakanaka, kune bvunzo dzinogona kuona chirwere ichi. Mune dzimwe nyika, mwana wese achangoberekwa anoongororwa zvirwere zvakawanda zvisingawanzoitiki kuchipatara. Izvi zvinoitwa uchishandisa ropa diki rinotorwa kubva pachitsitsinho chemwana (heel stick test).
Kana mwana wako aine zviratidzo zvataurwa pamusoro apa, chiremba wako achafungidzira kuti ane chirwere ichi uye acharaira kuongororwa kweropa neweti kuti zvionekwe.
Chii chingaitwa kana chirwere ichi chikasimbiswa?
Mushonga mukuru we galactosemia kubvisa zvachose lactose ne galactose kubva mukudya kwemwana.
- Izvi zvinoreva kuti haugone kupa mwana wako mukaka wemuzamu . Uye haugonewo kupa mukaka wemukaka nguva dzose .
- Pane kudaro, mushonga wesoya wakakosha unokurudzirwa nachiremba unofanira kupihwa.
- Kana mwana akura zvishoma, zvinhu zvakaita semukaka nezvinhu zvinogadzirwa nemukaka (yogati, chizi, bota) hazvigone kuwedzerwa mukudya kwake.
- Sezvo mimwe michero, miriwo, uye zvihwitsi zvingavewo ne galactose shoma, unofanira kutaura nachiremba wako uye nyanzvi yezvekudya kuti uzive kuti ndezvipi zvekudya zvakachengeteka.
- Sezvo mukaka usingabviswi zvachose mukudya, chiremba anokurudzira kupa mwana calcium inodiwa, vhitamini D, uye vhitamini K muchimiro chezvinowedzera kudya.
Yeukai kuti kudya uku chinhu chinofanira kutevedzwa kweupenyu hwese hwese. Asi kana chirwere chikaonekwa nekukurumidza uye kudya kwacho kukadzorwa nemazvo, mwana anogona kurarama hupenyu hwakanaka uye hwakanaka.
Duarte galactosemia (DG) nemamwe marudzi
Duarte Galactosemia (DG) chirwere chisina kunyanya kuoma kupfuura Classic Galactosemia. Vana vane chirwere ichi vane dambudziko rekugaya galactose, asi vangasada kudya kwakasimba. Vamwe vacheche vanogona kuramba vachiyamwisa. Zvisinei, sarudzo iyi inofanira kuitwa nachiremba wako chete.
Vacheche vane mhando yechipiri neyechitatu vanewo matambudziko mashoma pane avo vane mhando yekare. Zvisinei, kuchine njodzi yekubatwa nezvinhu zvakaita semakatarakiti, matambudziko eitsvo nechiropa.
Mharidzo Yekuenda Nayo Kumba
- Galactosemia chirwere chisingawanzoitiki asi chakakomba chemajini chinokonzera kutadza kugaya galactose, shuga inowanikwa mumukaka.
- Kana mwana achangoberekwa akaramba achiratidza zviratidzo zvakaita sekurutsa, jaundice, uye kutadza kuwedzera uremu mushure memazuva mashoma ekuyamwisa, idambudziko . Enda kuna chiremba nekukasika.
- Kuongororwa kwechirwere ichi nekukurumidza uye kupa mwana chikafu chisina galactose (kunyanya soy flour) zvinogona kupa mwana mukana wekurarama hupenyu hwakanaka uye hwakanaka.
- Usambofa wakachinja kudya kwemwana wako chero nguva yaunoda. Gara uchitevedzera mirairo yachiremba wako .
- Kana mwana ane Galactosemia akatarisirwa zvakanaka uye vabereki vake vakazvipira, anogona kurarama hupenyu hunofadza sevamwe vana.
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