Xa ugqirha wakho ekubhalela iyeza elibizwa ngokuba yiNitisinone kuwe okanye kumntwana wakho, kuyinto eqhelekileyo ukuziva usoyika kwaye unexhala. Oku kungenxa yokuba eli asiloyeza elisetyenziswa kakhulu. Kodwa ungakhathazeki. Kweli nqaku, siza kuthetha ngeli yeza ngendlela elula kakhulu onokuyiqonda. Njengokuba umhlobo ebenokukuchazela lona.
Lithini eli yeza libizwa ngokuba yiNitisinone?
Ngamafutshane, iNitisinone liyeza elicothisa ukuqhekeka kwe-amino acid tyrosine emzimbeni wethu. Isetyenziswa kakhulu ukunyanga isifo esingaqhelekanga kakhulu, esibizwa ngokuba yi-heritage tyrosinemia type I.
Khawucinge nje, umntu onesi sifo akakwazi ukugaya okanye ukuphula i-tyrosine ngokufanelekileyo. Emva koko inokuqokelelwa emzimbeni kwaye yonakalise amalungu anjengesibindi kunye nezintso. Iyeza i-Nitisinone iyayimisa loo ngqokelela inobungozi. Eli yeza likwaphantsi kwegama elithi Orfadin.
Ndimele ndimxelele ntoni ugqirha ngaphambi kokuba ndisebenzise eli yeza?
Ngaphambi kokuba ugqirha wakho akunike eli yeza, kubaluleke kakhulu ukwazi imbali yakho epheleleyo yempilo. Ngoko ke, qiniseka ukuba umazisa ngale nto ilandelayo:
- Sixelele ukuba une-allergy kwi-Nitisinone okanye nakweyiphi na enye iyeza, ukutya, okanye idayi .
- Ukuba ukhulelwe, okanye ulindele umntwana kungekudala, yitsho.
- Ukuba ungumama oncancisayo, sixelele ngayo loo nto.
Ngokusekelwe kolu lwazi, ugqirha wakho uya kugqiba ukuba eli yeza lifanelekile kuwe okanye ukuba kufuneka kutshintshwe idosi.
Ulisebenzisa njani kanye kanye eli yeza?
Ukuze ufumane unyango olungcono, kubalulekile ukulusebenzisa ngokuchanekileyo.
- Sela eli yeza neglasi yamanzi.
- Eyona nto ibalulekileyo kukuthatha eli yeza ubuncinane iyure ngaphambi kokuba ulitye. Sukulithatha kunye nokutya. Oku kungenxa yokuba ukulithatha kunye nokutya kunokunciphisa ukufunxwa kweyeza emzimbeni.
- Ukuba uyinika abantwana abancinci, ungayivula ngononophelo ikhaphu, uyinyibilikise ipowder yeyeza emanzini amancinci, ifomyula, okanye isosi yeapile, uze uyinike ngecephe. Nangona kunjalo, kufuneka uyinike bona kwangoko emva kokuyinyibilikisa, kwaye akulunganga ukuyigcina.
- Thatha idosi echanekileyo njengoko ugqirha wakho ekuyalele. Musa ukuthatha ngaphezu komlinganiselo omiselweyo nangasiphi na isizathu.
- Musa ukuyeka ukuthatha amayeza ngequbuliso ngaphandle kwengcebiso kagqirha wakho.
Eli yeza lelakho kuphela. Musa ukwabelana ngalo nabanye abantu nangasiphi na isizathu.
Xa kunikwa abantwana abancinci
Eli yeza linikwa neentsana ezisandul’ ukuzalwa phantsi kweemeko ezithile ezikhethiweyo. Nangona kunjalo, nceda uxoxe ngale nto nogqirha wezingane uze ulandele imiyalelo yakhe ngononophelo.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Ukuba ucinga ukuba ngempazamo uthathe ngaphezu kwedosi emiselweyo, fowunela iZiko loLwazi lweePoisons kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko, okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Wenza ntoni ukuba uphoswe yintlanganiso yamayeza?
Thatha idosi oyiphosileyo ngokukhawuleza xa ukhumbula. Nangona kunjalo, ukuba sele kuza kufuneka uthathe idosi elandelayo, yitsibe idosi oyiphosileyo uze uthathe idosi elandelayo ngexesha elicwangcisiweyo. Ungaze uthathe idosi ephindwe kabini ukuze ubuyisele idosi oyilibeleyo.
Izinto ekufuneka uzilumkele xa usebenzisa eli yeza
Kukho izinto ezibalulekileyo ekufuneka uziqwalasele ngelixa usebenzisa eli yeza.
1. Ukuhlolwa rhoqo kwezonyango: Yiya kugqirha wakho ngexesha. Kusenokufuneka wenze umsebenzi wegazi obalulekileyo ukuze ubone ukuba amayeza asebenza njani emzimbeni wakho. Musa ukuwaphosa.
2. Ukutya Okukhethekileyo: Le yeyona nto ibalulekileyo neyimfuneko. Ngelixa usela eli yeza, kuya kufuneka unciphise ngokungqongqo ukutya okuqulethe ii-amino acids i-tyrosine kunye ne -phenylalanine . Ugqirha wakho kunye nengcali yesondlo baya kukunika uluhlu olucacileyo lokutya omele ukutye nomele ungakutyi. Ukunamathela ngokungqongqo kule ndlela yokutya kubalulekile ukuze unyango luphumelele.
Zithini iziphumo ebezingalindelekanga ezinokubakho zale yeza?
Njengalo naliphi na iyeza, iNitisinone inokubangela iziphumo ebezingalindelekanga. Nangona ingenguye wonke umntu ozifumanayo, kubalulekile ukuba uzazi.
| Uhlu lweziphumo ebezingalindelekanga | |
|---|---|
| Iziphumo ebezingalindelekanga ekufuneka uzixele kugqirha wakho ngoko nangoko | |
| Ii-aleji | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe okanye ulwimi. |
| Iingxaki zamehlo | Utshintsho embonweni, iintlungu zamehlo, ukubomvu, ukuva ukukhanya. |
| Iingxaki zesibindi | Umchamo omnyama, ilindle elikhanyayo, iintlungu kwicala eliphezulu lasekunene lesisu, ukutyheli kwamehlo okanye ulusu (njenge-jaundice). |
| Iimpawu eziqhelekileyo | Ukulahlekelwa ngumdla wokutya, isicaphucaphu, umkhuhlane, kunye nokungonwabi. |
| Ezinye iimpawu ezinzulu | Ukopha okanye ukukrweleka okungaqhelekanga, amaqhuma abuhlungu ezintendeni zezandla kunye nasezinyaweni. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Ukungonwabi kwesisu | Urhudo (ukudumba). |
| Utshintsho lolusu neenwele | Ulusu olomileyo, ukulahleka kweenwele. |
Ukuba ubona into engaqhelekanga engekho kolu luhlu, thetha nogqirha wakho ngayo.
Ugcina njani amayeza ekhuselekile?
Ukugcina umgangatho wale yeza ulungile, kubaluleke kakhulu ukuligcina ngokuchanekileyo.
- Qiniseka ukuba uyigcina efrijini. Ifanele igcinwe kubushushu obuphakathi kwe-2 kunye ne-8 degrees Celsius (36 kunye ne-46 degrees Fahrenheit).
- Musa ukugcina efrijini nangasiphi na isizathu. Musa ukuvumela iyeza liqine.
- Musa ukuyishiya apho abantwana banokuyifumana khona.
- Lahla amayeza aphelelwe lixesha.
Olu xwebhu lolwazi lushwankathelo nje. Ukuba uneminye imibuzo, nceda ungathandabuzi ukubuza ugqirha wakho.
Umyalezo Wokuya Ekhaya
- I-Nitisinone liyeza elikhethekileyo elinikwa ukunyanga isifo esingaqhelekanga semfuza esibizwa ngokuba yi-hereditary tyrosinemia type I.
- Eli yeza lifanele lithathwe iyure enye ngaphambi kokutya . Musa ukulisebenzisa kunye nokutya.
- Musa ukuyeka ukuthatha amayeza ngequbuliso ngaphandle kwengcebiso kagqirha.
- Ukutya okukhethekileyo kuyimfuneko ngexesha lonyango. Landela imiyalelo enikwe ngugqirha kunye nengcali yesondlo ngokuchanekileyo.
- Ukuba ufumana naziphi na iziphumo ebezingalindelekanga ezinje ngentlungu yamehlo, ukutyheli kolusu, okanye ukopha okungaqhelekanga , yazisa ugqirha wakho ngoko nangoko.
- Gcina amayeza ngokukhuselekileyo efrijini , kude nokufikelela kwabantwana.
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