Phenylketonuria (PKU) Kuongorora

Zvemukati

• Chii chinonzi PKU kuongorora bvunzo?
• Chii chinoshandiswa?
• Nei mwana wangu achida bvunzo yekuongorora yePKU?
• Chii chinoitika panguva yePKU yekuongorora bvunzo?
• Ndichafanira here kuita chero chinhu kugadzirira mwana wangu bvunzo?
• Pane here njodzi kune bvunzo?
• Zvinorevei mhedzisiro yacho?
• Pane chimwe chinhu here chandinofanira kuziva nezve PKU yekuongorora bvunzo?
• Zvinyorwa

Chii chinonzi PKU kuongorora bvunzo?

Kuongororwa kwePKU kuongororwa kweropa kunopihwa vacheche maawa makumi maviri nemasere nemaviri kusvika makumi maviri nemaviri mushure mekuzvarwa. PKU inomiririra phenylketonuria, chirwere chisingawanzoitika chinodzivirira muviri kuputsa zvakanaka chinhu chinonzi phenylalanine (Phe). Phe chikamu chemapuroteni anowanikwa mune zvakawanda zvekudya uye mune inotapira yekugadzira inonzi aspartame.

Kana iwe uine PKU uye uchidya izvi zvekudya, Phe anozovaka muropa. Yakakwira mazinga ePhe anogona kukuvadza zvachose system yemitsipa uye huropi, zvichikonzera matambudziko akasiyana ehutano. Izvi zvinosanganisira kubatika, matambudziko epfungwa, uye kuremara kwakanyanya kwepfungwa.

PKU inokonzerwa nekuchinja kwemajini, shanduko mune yakajairika mashandiro ejeni. Magene ndiwo akakosha mayuniti enhaka akapfuudzwa kubva kuna mai nababa vako. Kuti mwana awane kusagadzikana, ivo amai nababa vanofanirwa kupfuudza iyo yakachinjika PKU gene.

Kunyangwe PKU isingawanzoitika, vese vacheche muUnited States vanofanirwa kuwana bvunzo yePKU.

• Muedzo wacho uri nyore, pasina kana njodzi yehutano. Asi inogona kuponesa mwana kubva mukukuvara kwehupenyu hwese uye / kana mamwe matambudziko akakomba ehutano.
• Kana PKU ikawanikwa kare, kutevera yakakosha, yakaderera-mapuroteni / yakaderera-Phe chikafu inogona kudzivirira kunetseka.
• Iko kune kwakasarudzika-kwakagadzirwa mafomula evacheche ane PKU.
• Vanhu vane PKU vanofanirwa kugara pane protein / yakaderera-Phe chikafu kwehupenyu hwavo hwese.

Mamwe mazita: PKU achangozvarwa kuongorora, PKU bvunzo

Chii chinoshandiswa?

Chiyero chePKU chinoshandiswa kuona kana mwana achangoberekwa aine huwandu hwakanyanya hwePhe muropa. Izvi zvinogona kureva kuti mwana ane PKU, uye mimwe miedzo icharairwa kusimbisa kana kutonga kunze kwekuongororwa.

Nei mwana wangu achida bvunzo yekuongorora yePKU?

Vacheche muUnited States vanofanirwa kuwana bvunzo yePKU. Kuedzwa kwePKU kunowanzo kuve chikamu chezviyero zveyedzo inonzi yekuzvarwa kuongororwa. Vamwe vacheche vakura uye vana vangangoda kuyedzwa kana vakagamuchirwa kubva kune imwe nyika, uye / kana kana vaine chero zviratidzo zvePKU, zvinosanganisira:

• Kunonoka kukura
• Zvinetso zvehungwaru
• Kunhuwa kunhuwa mukufema, ganda, uye / kana weti
• Musoro mudiki zvisingaite (microcephaly)

Chii chinoitika panguva yePKU yekuongorora bvunzo?

Anopa hutano achachenesa chitsitsinho chemwana wako nedoro uye obaya chitsitsinho netsono shoma. Mupiro anozotora madonhwe mashoma eropa uye oisa bhandeji panzvimbo iyi.

Muedzo unofanirwa kuitwa pasina kukurumidza kupfuura maawa makumi maviri nemana mushure mekuzvarwa, kuve nechokwadi chekuti mwana atora imwe protein, kungave kubva mumukaka wemukaka kana fomula. Izvi zvinobatsira kuona kuti mhedzisiro yacho ndeyechokwadi. Asi iyo bvunzo inofanira kuitwa pakati pe24-72 maawa mushure mekuzvarwa kudzivirira zvinogona kuitika PKU matambudziko. Kana mwana wako asina kuzvarwa muchipatara kana kana iwe wakabuda muchipatara kare, iva nechokwadi chekutaura nemubatsiri wehutano hwemwana wako kuronga PKU bvunzo nekukurumidza sezvazvinogona.

Ndichafanira here kuita chero chinhu kugadzirira mwana wangu bvunzo?

Iko hakuna kwakakosha kugadzirira kunodiwa kwePKU bvunzo.

Pane here njodzi kune bvunzo?

Pane njodzi shoma kumwana wako ane tsono test bvunzo. Mwana wako anogona kunzwa chidiki pacheche kana chitsitsinho chaiswa, uye kupwanya kudiki kunogona kuumba panzvimbo iyi. Izvi zvinofanirwa kuenda nekukurumidza.

Zvinorevei mhedzisiro yacho?

Kana mhedzisiro yemwana wako yanga isiri yakajairwa, wako wekuchengeta hutano anozoraira mimwe bvunzo kuti asimbise kana kutonga kunze kwePKU. Iyi bvunzo inogona kusanganisira kuwedzerwa kuongororwa kweropa uye / kana weti kuongororwa. Iwe nemwana wako munogona zvakare kuwana magene ekuongororwa, nekuti PKU inzvimbo yekugara nhaka.

Kana zvawanikwa zvaive zvakajairika, asi bvunzo yacho yakaitwa nekukurumidza kupfuura maawa makumi maviri nemana mushure mekuzvarwa, mwana wako angangoda kuyedzwa zvekare pa1 kusvika kumavhiki maviri ezera.

Dzidza zvakawanda nezve bvunzo dzemarabhoritari, mareferenzi masosi, uye mhinduro dzekunzwisisa

Pane chimwe chinhu here chandinofanira kuziva nezve PKU yekuongorora bvunzo?

Kana mwana wako akaonekwa kuti ane PKU, anogona kunwa fomura isina Phe. Kana iwe uchida kuyamwisa, taura wako mupi wezvehutano. Mukaka wemuzamu une Phe, asi mwana wako anogona kunge aine hushoma, achiwedzeredzwa neiyo Phe-isina fomura. Zvisinei, mwana wako anozoda kugara pane yakasarudzika-mapuroteni chikafu cheupenyu hwese. Kudya kwePKU kazhinji kunoreva kudzivirira kwepamusoro-mapuroteni chikafu senge nyama, hove, mazai, dairy, nzungu, uye bhinzi. Panzvimbo iyoyo, chikafu chingangosanganisira zviyo, sitachi, michero, chinotsiva mukaka, uye zvimwe zvinhu zvine Phe yakaderera kana isina.

Mubatsiri wehutano wemwana wako anogona kukurudzira mumwe kana vamwe nyanzvi uye zvimwe zviwanikwa kuti zvikubatsire kubata kudya kwemwana wako uye kuchengetedza mwana wako akagwinya. Kune zvakare zvakasiyana zviwanikwa zvinowanikwa kune vechidiki nevakuru vane PKU Kana iwe uine PKU, taura nemupi wako wekuchengeta nezvezvenzira dzakanakisa dzekutarisira zvaunodya uye zvehutano zvido zvako.

Zvinyorwa

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Ruzivo ruri pane ino saiti harufanire kushandiswa sekutsiva kwehunyanzvi kurapwa kana kurairwa. Bata mupi wehutano kana iwe uine mibvunzo nezve hutano hwako.