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Phenylketonuria (Pku)

Uhlolojikelele

I-Phenylketonuria (fen-ul-key-toe-NU-ree-uh), ebizwa nangokuthi i-PKU, luyifo elingavamile elidluliselwa ezizukulwaneni eliholela ekubunjweni kwamangqamuzana ama-amino acid abizwa ngokuthi yi-phenylalanine emzimbeni. I-PKU ibangelwa yishintsho ku-gene le-phenylalanine hydroxylase (PAH). Le gene iyasiza ekwenzeni i-enzyme edingekayo ukuze iphule i-phenylalanine.

Ngaphandle kwe-enzyme edingekayo ukuze iphule i-phenylalanine, ukwakheka okungozi kungaqala lapho umuntu one-PKU edla ukudla okuneprotheni noma edla i-aspartame, i-sweetener yemvelo. Lokhu kungase kuholele ezinkingeni zempilo ezingathi sína.

Phakathi nokuphila kwabo konke, abantu abane-PKU—izingane, abantwana nabantu abadala—kudingeka balandele ukudla okulinganiselwe i-phenylalanine, etholakala kakhulu ekudleni okuneprotheni. Imithi emisha ingase ivumele abanye abantu abane-PKU ukuba badle ukudla olunezinga eliphezulu noma elingenamkhawulo le-phenylalanine.

Izingane e-United States nakwamanye amazwe amaningi ziqalwa ukuhlolwa kwe-PKU ngokushesha ngemva kokuzalwa. Nakuba ayikho imithi yokwelapha i-PKU, ukuqaphela i-PKU nokuqala ukwelashwa ngokushesha kungasiza ukuvimbela ukungakwazi ukucabanga, ukuqonda nokuxhumana (ukukhubazeka kobuchopho) nezinye izinkinga zempilo ezinkulu.

Izimpawu

Izingane ezisanda kuzalwa ezinoku-PKU ekuqaleni azinawo ubuhlungu. Kodwa-ke, ngaphandle kokwelashwa, izingane ngokuvamile zithuthukisa izimpawu ze-PKU phakathi nezinyanga ezimbalwa.

Izimpawu nezimpawu ze-PKU engalashwanga zingaba zibumnene noma ezinzima futhi zingafaka:

  • Ukuphunga okubi emphefumulweni, eziphucwini noma emchameni, okubangelwa yi-phenylalanine eningi emzimbeni
  • Izinkinga zesimiso sezinzwa (ezinso) ezingafaka ukubamba
  • Ukukhishwa kwesikhumba, njenge-eczema
  • Isikhumba esilula, izinwele nombala wamehlo kunamalungu omndeni, ngoba i-phenylalanine ayikwazi ukuguqula ibe yi-melanin - i-pigment ehambisana nombala wezinwele nesikhumba
  • Usayizi olukhulu kakhulu lwephethini (microcephaly)
  • Ukusebenza ngokweqile
  • Ubuthakathaka bokuqonda
  • Ukuthuthukiswa okulandelayo
  • Izinkinga zokuziphatha, zomzwelo nezempilo
  • Ukuphazamiseka kwengqondo

Ubunzima be-PKU kuncike ohlotsheni.

  • PKU eqhelekile. Uhlobo olunzima kakhulu lokuphuza lubizwa ngokuthi yi-PKU eqhelekile. I-enzyme edingekayo ukuqhekeza i-phenylalanine ayikho noma incintiswe kakhulu. Lokhu kuholela emazingeni aphezulu e-phenylalanine angabangela ukonakala kokukhulu kwengqondo.
  • Izinhlobo ezingathandeki ze-PKU. Ezinhlotsheni ezilula noma ezimaphakathi, i-enzyme isasebenza, ngakho amazinga e-phenylalanine awaphezulu, eholela engozini encane yokonakala okukhulu kwengqondo.

Kungakhathaliseki uhlobo, izingane eziningi, izingane nabantu abadala abane-disorder basadinga ukudla okukhethekile kwe-PKU ukuvimbela ubuthakathaka bokuqonda nezinye izinkinga.

Abesifazane abane-PKU futhi bakhulelwe baphazanyiswa uhlobo olunye lokuphuza oluthi yi-PKU yomzali. Uma abesifazane bengalandelanga ukudla okukhethekile kwe-PKU ngaphambi nangesikhathi sokukhulelwa, amazinga e-phenylalanine egazini angaba aphezulu futhi alimaze ingane ezikhula.

Ngisho nabesifazane abanezinhlobo ezingathandeki ze-PKU bangafaka izingane zabo ezingazalwanga engozini ngokungalandelani ukudla kwe-PKU.

Izingane ezizalwa kubesifazane abanama-phenylalanine aphezulu ngokuvamile azilithi i-PKU. Kodwa-ke ingane ingaba nezinkinga ezinkulu uma amazinga e-phenylalanine aphezulu egazini likamama ngesikhathi sokukhulelwa. Ekudalweni, ingane ingaba:

  • Isisindo esincane sokuzalwa
  • Ikhanda elincane ngokungavamile
  • Izinkinga zenhliziyo

Ngaphezu kwalokho, i-PKU yomzali ingabangela ingane ukuba ibe nokuthuthukiswa okulandelayo, ubuthakathaka bokuqonda nezinkinga zokuziphatha.

Isikhathi sokubona udokotela

Xhumana nodokotela wakho ezimweni ezilandelayo:

  • Izingane ezisanda kuzalwa. Uma ukuhlolwa okujwayelekile kwengane esanda kuzalwa kukhombisa ukuthi ingane yakho ingaba ne-PKU, umhlinzeki wezempilo yengane yakho uzofuna ukuqala ukwelashwa kokudla ngokushesha ukuvimbela izinkinga zesikhathi eside.
  • Abesifazane abaneminyaka yokuzala. Kubalulekile kakhulu kubesifazane abane-PKU ukuthi babone umhlinzeki wezempilo futhi bagcine ukudla kwe-PKU ngaphambi kokukhulelwa nangesikhathi sokukhulelwa. Lokhu kunciphisa ingozi yamazinga aphezulu e-phenylalanine okulimaza izingane zabo ezingazalwanga.
  • Abantu abadala. Abantu abane-PKU badinga ukunakekelwa okuphila kwabo konke. Abantu abadala abane-PKU abaye bayeka ukudla kwe-PKU ebusheni babo bangazuza ngokuya kubanakekeli babo bezempilo. Ukubuyela ekudleni kungathuthukisa ukusebenza kwengqondo nokuziphatha futhi kuvimbele ukulimala okuqhubekayo ohlelweni lwezinzwa elikhulu okungabangelwa amazinga aphezulu e-phenylalanine.
Izimbangela

Ukuze ube nesifo esidluliselwa ngama-genes amabili afanayo (autosomal recessive disorder), uyafa i-genes ezimbili ezihluke kakhulu, ngezinye izikhathi ebizwa ngokuthi yi-mutations. Uthola eyodwa kumzali ngamunye. Impilo yabo ayithintiwe kakhulu ngoba bane-gene eyodwa kuphela eguqukile. Abathwali ababili banethuba elingu-25% lokuba ne-child engathintekile enama-genes amabili angathintekile. Banethuba elingu-50% lokuba ne-child engathintekile futhi ingumthwali. Banethuba elingu-25% lokuba ne-child ethintekile enama-genes amabili aguqukile.

Ukushintsha kwe-gene (ukuguquka kwe-genetic mutation) kubangela i-PKU, engaba lula, ephakathi noma eqatha. Kumuntu onayo i-PKU, ukuguquka kwe-gene ye-phenylalanine hydroxylase (PAH) kubangela ukungabikho noma ukuncishiswa kwesilinganiso se-enzyme edingekayo ekucubunguleni i-phenylalanine, i-amino acid.

Ukubunjwa okubi kwe-phenylalanine kungakhula lapho umuntu onayo i-PKU edla ukudla okunamaprotheni amaningi, njengobisi, i-cheese, amantongomane noma inyama, noma ama-grains njengasonka ne-pasta, noma i-aspartame, i-artificial sweetener.

Ukuze ingane izuze i-PKU, umama nobaba bobabili kumele babe futhi badlulisele i-gene eguqukile. Le ndlela yokudluliselwa kwesifo ibizwa ngokuthi yi-autosomal recessive.

Kungenzeka ukuba umzali abe ngumthwali — ukuba ne-gene eguqukile ebangela i-PKU, kodwa angabi nesifo. Uma umzali oyedwa kuphela one-gene eguqukile, awekho umngcipheko wokudlulisela i-PKU kwingane, kodwa kungenzeka ukuba ingane ibe ngumthwali.

Ngokuvamile, i-PKU idluliselwa ezinganeni abazali ababili abangabathwali be-gene eguqukile, kodwa abayazi.

Izici eziyingozi

Izimbangela ezingozi zokudluliselwa kwe-PKU zihlanganisa:

  • Ukuba bobabili abazali baneguquko le-jini eliholela ku-PKU. Abazali ababili kufanele badlulisele ikhophi yejini eliguqukile ukuze ingane yabo ithuthukise le meko.
  • Ukuba ngowesizwe esithile noma uhlanga oluthile. I-PKU ichaphazela abantu abavela ezizweni eziningi emhlabeni jikelele. Kodwa e-United States, ivame kakhulu kubantu abavela eYurophu futhi ayivamile kakhulu kubantu abavela e-Afrika.
Izingqinamba

Ukwehluleka ukwelashwa kwe-PKU kungaholela ezingxakini kubasanda kuzalwa, ezinganeni nasekubantu abadala abane leli gciwane. Uma abesifazane abane-PKU benamaqondo aphezulu e-phenylalanine egazini ngesikhathi sokukhulelwa, lokhu kungalimaza ingane yabo engakazalwa.

Ukwehluleka ukwelashwa kwe-PKU kungaholela ku:

  • Ukonakala kobuchopho okungenakulungiswa kanye nokukhubazeka kwengqondo okuqala ezinyangeni ezimbalwa zokuqala zokuphila
  • Izinkinga zezinzwa ezinjengokuhlushwa yizigwegwe nokuzamazama
  • Izinkinga zokuziphatha, zomzwelo nezenhlalo kubantwana abadala nabantu abadala
  • Izinkinga ezinkulu zempilo nokuthuthukiswa
Ukuvimbela

Uma unayo i-PKU futhi ucabanga ukuthi ukhulelwe:

  • Landelani ukudla okune-phenylalanine ephansi. Abesifazane abane-PKU bangavimbela ukulimala engwaneni yabo elikhulayo ngokunamathela noma ngokubuyela ekudleni okune-phenylalanine ephansi ngaphambi kokukhulelwa. Izithasiselo zokudla ezenzelwe abantu abane-PKU zingaqinisekisa ukuba neprotheni nezinongo ezanele ngesikhathi sokukhulelwa. Uma unayo i-PKU, khuluma nodokotela wakho ngaphambi kokuba uqale ukuzama ukuthola umntwana.
  • Cabanga ngokwelulekwa ngokuzalwa. Uma unayo i-PKU, ilungu lomndeni oluseduze eline-PKU noma ingane enayo i-PKU, ungazuza ngokwelulekwa ngokuzalwa ngaphambi kokukhulelwa. Ochwepheshe bezofuzo (isazi sezofuzo) bangakusiza ukuthi uqonde kangcono ukuthi i-PKU idluliselwa kanjani emndenini wakho. Ochwepheshe bangakusiza futhi ukuthi unqume ingozi yakho yokuba nengane enayo i-PKU futhi bakusize ekucwaneni komndeni.
Ukuxilongwa

Ukuhlolwa kwabakhulelwe kusatshwa cishe zonke izimo ze-phenylketonuria. Zonke izifundazwe ezingama-50 e-United States zidinga ukuba abakhulelwe bahlolwe yi-PKU. Amazwe amaningi nawo avame ukuhlola izingane ezintsha nge-PKU.

Uma une-PKU noma umlando womndeni wayo, umhlinzeki wakho wezinsizakalo zezempilo angakuncoma ukuhlolwa kokuhlola ngaphambi kokukhulelwa noma ukuzalwa. Kungenzeka ukuthola abathwali be-PKU ngokuhlolwa kwegazi.

Ukuhlolwa kwe-PKU kwenziwa ngosuku olulodwa noma amabili ngemva kokuzalwa komntwana wakho. Ukuze uthole imiphumela eqondile, ukuhlolwa kwenziwa ngemva kokuba umntwana wakho eneminyaka engu-24 ubudala futhi ngemva kokuba umntwana wakho esethole iprotheni ekudleni.

  • Usizi noma uchwepheshe welebhu uqoqa izintuli ezimbalwa zegazi ezinhlangothini yomntwana wakho.
  • Ilebhu ihlola isampula legazi ngezifo ezithile zokuguqulwa komzimba, kufaka phakathi i-PKU.
  • Uma ungazalisi umntwana wakho esibhedlela noma ukhishwa ngokushesha ngemva kokuzalwa, kungadingeka uhlele ukuhlolwa kwabakhulelwe nomhlinzeki wakho wezinsizakalo zezempilo.

Uma lo mkhuba ubonisa ukuthi umntwana wakho angaba ne-PKU:

  • Umntwana wakho angaba nokulingwa okuqhubekayo ukuqinisekisa ukuxilongwa, kufaka phakathi ukuhlolwa kwegazi okwengeziwe kanye nokuhlolwa kwemithambo
  • Wena nomntwana wakho ningaba nokulingwa kwe-genetic ukuze nithole ushintsho lwe-gene le-PKU
Ukwelashwa

Ukuqala ukwelashwa ngokushesha nokuqhubeka nokuphathwa kokuphila konke kungasiza ekunciphiseni ukukhubazeka kobuchopho nezinye izinkinga zempilo ezikhulu. Izindlela zokwelapha eziyinhloko ze-PKU zifaka:

  • Ukudla okuphila konke okunezinga eliphansi kakhulu lokudla okune-phenylalanine
  • Ukuthatha ifomula ye-PKU - isikhumulo esikhethekile sezondlo - ukuphila konke ukuqinisekisa ukuthi uthola amaprotheni anele (ngenaphenylalanine) nezondlo ezibalulekile ekuthuthukeni nasempilweni jikelele
  • Imithi, kubantu abathile abane-PKU Inani le-phenylalanine eliphephile liyahlukahluka kumuntu ngamunye one-PKU futhi lingashintsha ngokuhamba kwesikhathi. Ngokuvamile, umqondo ukudla kuphela inani le-phenylalanine elidingekayo ekuthuthukeni okunempilo nasezindleleni zomzimba, kodwa akukho okwengeziwe. Umhlinzeki wakho wezempilo angakwazi ukuthola inani eliphephile ngokusebenzisa:
  • Ukuhlaziywa njalo kwamarekhodi okudla namagrafu okukhula
  • Izivivinyo zegazi eziqhutshwa njalo eziqapha amazinga e-phenylalanine egazini, ikakhulukazi phakathi nezikhathi zokukhula kwabantwana nokubeletha
  • Ezinye izivivinyo ezihlola ukukhula, intuthuko nempilo Umhlinzeki wakho wezempilo angakubhekisela kudokotela obhalisiwe wezondlo ongakusiza ufunde ngokudla kwe-PKU, wenze izinguquko ekudleni kwakho uma kudingeka, futhi anikeze iziphakamiso zendlela yokuphatha izinselele zokudla kwe-PKU. Ngenxa yokuthi inani le-phenylalanine umuntu one-PKU angayidla ngokuphepha liphansi kangaka, kubalulekile ukugwema wonke ukudla okuneprotheni eningi, njengokuthi:
  • Ubisi
  • Amaqanda
  • I-Cheese
  • Ama-nuts
  • Imikhiqizo ye-soy, njenge-soybeans, i-tofu, i-tempeh ne-milk
  • Amabhinca nama-peas
  • Inyama yenkukhu, inyama yenkomo, inyama yehagu nanoma iyiphi enye inyama
  • Izinhlanzi Amaphethulu, ama-grains nezinye izitshalo cishe zizobe zimi kancane. Abantwana nabantu abadala nabo badinga ukugwema ezinye izibiliboko neziphuzo, kufaka phakathi ama-diet sodas amaningi nezinye iziphuzo ezina-aspartame (NutraSweet, Equal). I-Aspartame iyisithambisi esenziwe nge-phenylalanine. Eminye imithi ingaba ne-aspartame futhi ezinye izithasiselo noma ezinye izithasiselo zingaba namamanga acids noma i-skim milk powder. Xhumana nodokotela wakho wezokwelapha ngokuqukethwe kwemikhiqizo engenamanyala kanye nemithi yokwelapha. Khuluma nodokotela wakho noma udokotela wezondlo ukuze ufunde kabanzi ngezidingo zakho zokudla. Ngenxa yokudla okuvinjelwe, abantu abane-PKU badinga ukuthola izondlo ezibalulekile ngesikhumulo esikhethekile sezondlo. Ifomula engenayo i-phenylalanine inikeza amaprotheni abalulekile (ama-amino acids) nezinye izondlo ngendlela ephephile kubantu abane-PKU. Umhlinzeki wakho wezempilo nodokotela wezondlo bangakusiza uthole uhlobo olufanele lefomula.
  • Ifomula yabantwana abancane nabasakhula. Ngenxa yokuthi ifomula yabantwana abancane ne-breast milk ine-phenylalanine, abantwana abane-PKU badinga ifomula yabantwana abancane engenayo i-phenylalanine. Udokotela wezondlo angakwazi ukubala ngokucophelela inani le-breast milk noma ifomula evamile okumele isetshenziswe nefomula engenayo i-phenylalanine. Udokotela wezondlo angafundisa nabazali ukuthi bangakhetha kanjani ukudla okuqinile ngaphandle kokudlula inani le-phenylalanine lomntwana ngosuku.
  • Ifomula yabantwana abadala nabantu abadala. Abantwana abadala nabantu abadala baqhubeka nokuphuza noma ukudla isikhumulo sezondlo esingenayo i-phenylalanine (ifomula efanelekile yamaprotheni), njengoba kuqondiswe yisikhungo sezokwelapha noma udokotela wezondlo. Inani lakho lefomula yansuku zonke lihlukaniswe phakathi kwama-meals akho nama-snacks, esikhundleni sokuthi lidliwe noma liphuzwe kanye. Ifomula yabantwana abadala nabantu abadala ayifani naleyo eyenziwe ngabantwana abancane, kodwa futhi inikeza amaprotheni abalulekile ngaphandle kwe-phenylalanine. Ifomula iyaqhubeka ukuphila konke. Isidingo sesikhumulo sezondlo, ikakhulukazi uma wena noma umntanakho ningayithandi, kanye nokukhetha okulinganiselwe kokudla kungenza ukudla kwe-PKU kube inselele. Kodwa ukwenza isivumelwano esiqinile kuleli shintsho lokuphila yiyona ndlela kuphela yokuvimbela izinkinga zempilo ezinkulu abantu abane-PKU abangazithola. I-Food and Drug Administration (FDA) yamukela imithi ye-sapropterin (Kuvan) yokwelapha i-PKU. Imithi ingasetshenziswa ndawonye nokudla kwe-PKU. Abanye abantu abane-PKU abaphuza imithi bangase bangadingi ukulandela ukudla kwe-PKU. Kodwa imithi ayisebenzi kubo bonke abantu abane-PKU. I-FDA iphinde yamukela ukwelashwa okusha kwe-enzyme, i-pegvaliase-pqpz (Palynziq), kubantu abadala abane-PKU lapho ukwelashwa kwamanje kunganciphisi kahle amazinga e-phenylalanine. Kodwa ngenxa yemiphumela emibi eqhubekayo, engaba nzima, lokhu ukwelashwa kuphela okutholakala njengengxenye yohlelo oluvinjelwe ngaphansi kokunakekelwa kwabahlinzeki bezempilo abagunyaziwe.
Ukuzinakekela

Amasuye okusiza ekulawuleni i-PKU afaka ukugcina ulwazi lokudla okudliwayo, ukulinganisa ngokunembile, nokuba nomqondo. Njenganoma yini, uma la masu eziqeqeshwa kakhulu, kuyoba lula futhi ube nokukhathazeka okuncane. Uma wena noma ingane yakho ulandela ukudla okune-phenylalanine ephansi, kuzodingeka ugcine amarekhodi okudla okudliwayo nsuku zonke.

Ukuze kube nembile ngangokunokwenzeka, linganisa izingxenye zokudla usebenzisa izimbiza zokulinganisa eziqondile nezihlanganisi kanye nesikali lesikhishi esifunda ngamagremu. Inani lokudla liqhathaniswa nohlu lokudla noma lisetshenziswa ukubala inani le-phenylalanine edliwayo nsuku zonke. Ukudla ngakunye kanye nesidlo sakusihlwa kuhlanganisa ingxenye ehlukanisiwe kahle yefomula yakho ye-PKU yansuku zonke.

Amathayari okudla, izinhlelo zikhompyutha kanye nezinhlelo zokusebenza ze-smartphone ziyatholakala ezibala inani le-phenylalanine ekudleni kwengane, ekudleni okuqinile, kwifomula ye-PKU, nakwizithako ezivamile zokubhaka nokupheka.

Ukuhlela ukudla noma ukujikeleza kokudla kokudla okuqondisiwe kungasiza ekunciphiseni ezinye zezinto zokulandelela zansuku zonke.

Khuluma nodokotela wakho wezondlo ukuze uthole ukuthi ungaba nomqondo kangakanani ngokudla ukuze uhlale uqaphile. Isibonelo, sebenzisa izinongo nezindlela ezahlukahlukene zokupheka ukuguqula imifino ye-phenylalanine ephansi ibe yimenyu ephelele yezitsha ezahlukahlukene. Ama-herbs kanye nezinongo ezine-phenylalanine ephansi zingaba nencasa eningi. Khumbula nje ukulinganisa nokubala yonke into futhi ulungise izindlela zokupheka ngokudla kwakho okuqondile.

Uma unezinye izimo zempilo, kungadingeka ucabange ngazo uma uhlela ukudla kwakho. Khuluma nodokotela wakho noma nodokotela wezondlo uma unemibuzo.

Ukuphila ne-PKU kungaba inselele. La masu angasiza:

  • Funda kwamanye imindeni. Buza udokotela wakho mayelana namaqembu asekelayo endaweni noma ku-inthanethi abantu abaphila ne-PKU. Ukukhuluma nabanye abaye banqoba izinselele ezifanayo kungasiza. I-National PKU Alliance iyiqembu lokusekela oluku-inthanethi lemindeni nabantu abadala abane-PKU.
  • Thola usizo ngokuhlela imenyu. Udokotela obhalisiwe wezondlo onolwazi lwe-PKU angakusiza ukwakha ukudla okulula okune-phenylalanine ephansi. Udokotela wakho wezondlo angaba neminye imibono emihle yokudla kwemikhosi nezikhumbuzo.
  • Hlela kusengaphambili uma uya kudla ngaphandle. Ukudla kwindawo yokudlela yendawo kukuhlinzeka ngokuphumula ekhishini futhi kungaba mnandi komndeni wonke. Izindawo eziningi zinikeza okuthile okufaneleka ekudleni kwe-PKU. Kodwa ungathanda ukubiza kusengaphambili bese ubuza ngemenyu noma ulethe ukudla ekhaya.
  • Ungagxili ekudleni. Ukwenza isikhathi sokudla sibe yisikhathi somndeni kungasusa ukugxila ekudleni. Zama ingxoxo yomndeni noma imidlalo ngesikhathi sodla. Khuthaza izingane ezine-PKU ukuba zigxile ezemidlalo, emculweni noma ezintandokazi zazo, hhayi nje ngalokho ezingadli nakho ezingadli.
  • Vumela ingane yakho isize ekulawuleni ukudla kusenesikhathi. Izingane ezincane zingenza izinqumo mayelana nokuthi yiziphi izitsha, izithelo noma imifino abazifisayo ukudla futhi zisize ekuqondiseni izingxenye. Zingazisiza ngezinye izidlo ezilinganiselwe. Izingane ezindala zingasiza ekucwaningeni imenyu, zipakishe izidlo zazo futhi zigcine amarekhodi azo okudla.
  • Yenza uhlu lwakho lokudla nokudla kwakho nomndeni wonke engqondweni. Ikhabhodi egcwele ukudla okukhawulelwe kungaba lukhuni kwingane noma kumuntu omdala onen-PKU, ngakho-ke zama ukugxila ekudleni abantu bonke abangadli. Nikeza imifino ebilisiwe enepuroteni ephansi. Uma amalungu omndeni afisa, angangeza amashi, ikhokhonathi, inyama nengqolowa. Noma ubeke ibha yesaladi enepuroteni ephansi nephakathi. Unganikeza nomndeni wonke isobho noma i-curry enepuroteni ephansi.
  • Lungela ama-potlucks, ama-picnics nohambo ngemoto. Hlela kusengaphambili, ukuze kube khona njalo ukudla okuhambisana ne-PKU. Pakisha izidlo zezithelo ezintsha noma ama-crackers aneproteni ephansi. Thatha ama-kebabs ezithelo noma ama-skewers emifino ekuqokeleleni, futhi wenze isaladi enepuroteni ephansi ye-potluck yomkhandlu. Abazali abanye, abangane namalungu omndeni cishe bazokwenza ukulungiswa futhi basize uma uchaza ukulinganiselwa kokudla.
  • Khuluma nothisha nabanye abasebenzi esikoleni sengane yakho. Othisha bengane yakho nabasebenzi bekhefiriya bangaba usizo olukhulu ekudleni kwe-PKU uma uthatha isikhathi sokuchaza ukubaluleka kwayo nokuthi isebenza kanjani. Ngokusebenzisana nothisha bengane yakho, ungahlela kusengaphambili imicimbi ekhethekile yesikole nemibuthano ukuze ingane yakho ibe nethuba lokudla.
Ukulungiselela ukuqokwa kwakho

I-Phenylketonuria ivame ihlonishwa ngokuhlolwa kwabantwana abasanda kuzalwa. Uma ingane yakho ihlonishwa nge-PKU, cishe uzoyiswa esibhedlela noma ekliniki ekhethekile enenhlolokhulu ephakeme ephila i-PKU nodokotela wezondlo onolwazi lokudla kwe-PKU.

Nansi imininingwane ezokusiza ukuba ube lungile ekuhlanganyeleni kwakho bese wazi ukuthi yini okulindelekile.

Ngaphambi kokubonisana kwakho:

  • Cela ilungu lomndeni noma umngani ukuthi ahambe nawe ekuhlanganyeleni — ngezinye izikhathi kungaba nzima ukukhumbula yonke imininingwane enikezwe ngesikhathi sokuhlangana.
  • Yenza uhlu lwemibuzo okumele uyibuze umhlinzeki wakho wezempilo nodokotela wezondlo ukuze ukwazi ukusebenzisa kahle isikhathi sakho ndawonye.

Eminye imibuzo ongayibuza ingafaka:

  • Ingane yami ithole kanjani i-PKU?
  • Singayiphatha kanjani i-PKU?
  • Ingabe kukhona imithi yokwelapha lesi sifo?
  • Yikuphi ukudla okungavunyelwe nhlobo?
  • Yiluphi ukudla okusikisela?
  • Ingane yami kuzodingeka ihlale kuleli dijo elikhethekile impilo yayo yonke?
  • Yiluphi uhlobo lwefomula ingane yami ezoyidinga? Ingane yami ingancelwa ubisi lwebele?
  • Ingabe kukhona ezinye izithasiselo ezidingekayo?
  • Kwenzekani uma ingane yami idla ukudla okungafanele ukudla?
  • Uma ngithola ingane enye, ingane leyo izoba ne-PKU?
  • Ingabe kukhona amabhukwana noma ezinye izinto ezinyathelisiwe engingazithola? Yimaphi amawebhusayithi awancoma?

Umhlinzeki wakho wezempilo cishe uzokubuza imibuzo eminingana. Isibonelo:

  • Ingane yakho iye yaba naziphi izimpawu ezikukhathazayo?
  • Ingabe unemibuzo mayelana nokudla kwengane yakho?
  • Ingabe unokunzima ukulandela leli dijo?
  • Ukukhula nokuthuthukiswa kwengane yakho kuye kwaba njengokwabantwana abanye abangobudala obufanayo?
  • Wake waba nokulingwa kwe-genetic?
  • Ingabe kunoma imuphi omunye umuntu ohlobene nawe one-PKU?

Ikheli: 506/507, 1st Main Rd, Murugeshpalya, K R Garden, Bengaluru, Karnataka 560075

Umshwana wokuzihlangula: I-August iyinkundla yolwazi lwezempilo futhi izimpendulo zayo azihlanganisi iseluleko sezokwelapha. Njalo thintana nochwepheshe bezokwelapha onelayisensi eduze nawe ngaphambi kokwenza noma yiluphi ushintsho.

Yenziwe eNdiya, yomhlaba