Nawuphi na umzali uyothuka xa efumanisa ukuba umntwana wakhe unesifo esingaqhelekanga. Yimvakalelo engenakunceda. Nangona kunjalo, ngokuhambela phambili kwezonyango zanamhlanje, kukho unyango namhlanje lwezinye izifo ezazicingelwa ukuba azinyangeki. Namhlanje siza kuthetha ngesitofu esikhethekileyo esibizwa ngokuba yiFosdenopterin, esisetyenziselwa esinye sezifo ezingaqhelekanga kodwa ezinzima zemfuza, 'iMolybdenum Cofactor Deficiency Type A'.
Ngamafutshane, yintoni iMolybdenum Cofactor Deficiency Type A?
Eli ligama elintsonkothileyo kancinci, kodwa masiligcine lilula. Khawucinge ukuba imizimba yethu yifektri enkulu. Le fektri ineemashini ezincinci (iienzymes) ezenza imisebenzi eyahlukeneyo. Ukuze ezi mashini zisebenze kakuhle, zidinga isixhobo esikhethekileyo (i-cofactor). I-molybdenum cofactor yenye yezona zinto zibalulekileyo.
Abantwana abane-genetic disorder ebizwa ngokuba yi-Molybdenum Cofactor Deficiency Type A abakwazi ukuvelisa le nxalenye. Emva koko oomatshini abakwifektri bayayeka ukusebenza. Ngenxa yoko, iikhemikhali eziyingozi neziyingozi (umzekelo, ii-sulfites) ziqala ukuqokelelana engqondweni nasemzimbeni. Oku kunokubangela ukuba umntwana abe neengxaki ezinkulu ze-neurological, axhuzule, kwanokufa.
Kwenzeka ntoni ngegonyo leFosdenopterin?
Kulapho iyeza iFosdenopterin (igama lophawu: iNulibry) lisiza khona ukusinceda. Ayisiyonto yokunyanga yonke le meko, kodwa yenza into ebaluleke kakhulu.
Ngamafutshane, olu gonyo lubonelela ngenxalenye ebalulekileyo engenakuveliswa ngumzimba womntwana, ebizwa ngokuba yi -cyclic pyranopterin monophosphate (cPMP) .
Xa oku kunikwe, oomatshini abangasebenziyo (ii-enzymes) emzimbeni baqala ukusebenza kwakhona. Emva koko ukuqokelelana kwezo khemikhali zinobuthi kuyayeka, zize ziqale ukukhutshwa emzimbeni. Ke ngoko, kunceda kakhulu ekunciphiseni umngcipheko wokufa ngenxa yesifo. Ke ngoko, oku kufana nesipho sobomi kumntwana onje.
Qiniseka ukuba uxelela ugqirha wakho ezi zinto ngaphambi kokuba uqale unyango.
Ngaphambi kokuba umntwana wakho anikwe eli yeza, kubaluleke kakhulu ukuba iqela lezonyango lizazi izinto ezithile. Xoxa ngolu lwazi lulandelayo ngokucacileyo nogqirha wakho.
| Izinto ekufuneka zixelelwe | Kutheni oko kubalulekile? |
|---|---|
| Ii-aleji | Ukuba umntwana wakho une-allergy kwi-fosdenopterin okanye naliphi na elinye iyeza, ukutya, okanye idayi, qiniseka ukuba uyayikhankanya loo nto. |
| Ukukhulelwa okanye ukulindela umntwana | Nangona eli liyeza elidla ngokunikezelwa kwiintsana ezisandul’ ukuzalwa, ugqirha kufuneka aziswe ukuba umntu ofumana unyango ukhulelwe okanye uzama ukukhulelwa. |
| Ukuncancisa | Ukuba umama ofumana unyango uncancisa, kubaluleke kakhulu ukuxoxa ngale nto nogqirha. |
Ulisebenzisa njani eli yeza?
I-Fosdenopterin yinaliti enikwa umthambo . Idla ngokunikezelwa esibhedlele okanye ekliniki ngabasebenzi bezonyango abaqeqeshiweyo. Nangona kunjalo, ngamanye amaxesha, ugqirha wakho unokukuyalela ukuba unike inaliti ekhaya.
- Lawula ngexesha: Kubaluleke kakhulu ukunika olu gonyo ngexesha elinye yonke imihla, kanye njengoko ugqirha wakho ekuyalele. Qhubeka nonyango de ugqirha wakho akuxelele ukuba uyeke.
- Ukuba unikwa oku ekhaya: Ukuba uqeqeshwa ukukunika oku ekhaya, funda uze uqonde imiyalelo ngononophelo. Ukuba unemibuzo, buza ugqirha wakho okanye umongikazi wakho ngokuphindaphindiweyo.
Ukulahlwa ngokukhuselekileyo kweenaliti kunye neesirinji
Ungaze ulahle iinaliti neesirinji ezisetyenzisiweyo enkunkuma. Zifanele zibekwe kwisikhongozeli esenziwe ngendlela ekhethekileyo (isikhongozeli se-sharp) . Ukuba awunaso, ugqirha wakho angasifumana. Oku kubaluleke kakhulu kukhuseleko lomntwana wakho kunye nabo bonke abantu kusapho.
Yintoni omawuyenze ukuba uphoswe yidosi yeyeza?
- Ukuba usesibhedlele/eklinikhi: Ungaphoswa lusuku umntwana wakho anikwa ngalo amayeza. Ukuba awukwazi ukuya ngosuku olucwangcisiweyo, fowunela ugqirha wakho ngoko nangoko umxelele.
- Ukuba uyinika ekhaya: Ukuba uphoswe yidosi, yithathe ngokukhawuleza njengoko ukhumbula. Emva koko, linda ubuncinane iiyure ezi-6 emva kwedosi ephoswe ngayo de kube yidosi yakho elandelayo ecwangcisiweyo.Nika. Ungaze unike idosi ephindwe kabini. Ukuba unamathandabuzo, thetha nogqirha wakho.
Iziphumo ebezingalindelekanga kunye nezinto ekufuneka siziqaphele
Njengayo nayiphi na imithi, le inokuba nemiphumo emibi. Kubalulekile ukuzazi ezi zinto kwaye uthathe amanyathelo ngokukhawuleza ukuba kuyimfuneko.
| Iziphumo ebezingalindelekanga ekufuneka zixelwe kugqirha wakho ngoko nangoko | |
|---|---|
| Ukwaliwa kakhulu | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe okanye ulwimi, ubunzima bokuphefumla. |
| Iimpawu zosulelo | Umkhuhlane, ukubanda, ukukhohlela, umphimbo obuhlungu, iintlungu xa uchama. |
| Iingxaki zendawo yokutofa | Intlungu ebuhlungu, ukuba bomvu, okanye ukudumba kwindawo efakwe kuyo inaliti. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga ukuba azikhathazeki, kodwa kufuneka zixelwe kugqirha wakho ukuba ziyaqhubeka | |
| Iingxaki zenkqubo yokugaya ukutya | Urhudo, iintlungu zesisu, ukuhlanza. |
Kubalulekile: Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ubona into engaqhelekanga kumntwana wakho, fowunela ugqirha wakho ngoko nangoko.
Lumka ilanga!
Ulusu lomntwana wakho lunokuba buthathaka ngakumbi elangeni (olunobushushu belanga) ngelixa usebenzisa eli yeza. Ngoko ke, kuphephe ukuveza umntwana wakho elangeni elinamandla. Ukuba uphuma phandle, nxiba impahla yokuzikhusela kwaye usebenzise i-sunscreen efanelekileyo, njengoko kucetyisiwe ngugqirha wakho.
Ngaba kukho iingxaki ngamanye amayeza?
Ngokusekelwe kulwazi lwangoku, i-fosdenopterin ayibikwanga ukuba ibangela naluphi na unxibelelwano oluthile namanye amayeza. Nangona kunjalo, kubaluleke kakhulu ukunika ugqirha wakho uluhlu olupheleleyo lwawo nawaphi na amanye amayeza, iivithamini, amayeza emifuno (afana nee-decoctions, i-arishta), okanye izongezo zokutya umntwana wakho azisebenzisayo.
Uligcina njani iyeza? (Oku kubaluleke kakhulu)
Ukusebenza kakuhle kwale yeza kuxhomekeke ekugcinweni kwayo ngokufanelekileyo, ngoko ke landela le miyalelo ngokuchanekileyo.
- Iibhotile ezingavulwanga: Ezi bhotile mazigcinwe kwifriji kubushushu obuphakathi kwe -25 kunye ne -10 degrees Celsius. Zigcine kwibhokisi yokuqala de zisetyenziswe, zikhuselwe ekukhanyeni. Zikhuphe kwifriji imizuzu engama-30 ngaphambi kokuba uzisebenzise.
- Emva kokuxuba: Emva kokuxuba umgubo weyeza nolwelo, ungagcinwa kubushushu begumbi (15-25 Celsius) okanye efrijini (2-8 Celsius). Nangona kunjalo, kufuneka umntwana anikwe yona kwiiyure ezi-4 emva kokuxuba .
- Lahla amayeza aphelelwe lixesha okanye aseleyo. Cela ugqirha wakho akunike iingcebiso malunga nendlela yokuwalahla ngokukhuselekileyo.
Umyalezo Wokuya Ekhaya
- I-Fosdenopterin lunyango lwesifo esingaqhelekanga semfuza esibizwa ngokuba yi-Molybdenum Cofactor Deficiency Type A. Nangona ingasinyangi ngokupheleleyo esi sifo, inceda kakhulu ekunciphiseni umngcipheko wokufa.
- Kubalulekile ukunika olu gonyo ngexesha elifanayo yonke imihla, njengoko kuyalelwe ngugqirha wakho. Ukuba uphoswe yidosi, qhagamshelana nogqirha wakho ngoko nangoko.
- Lumka kakhulu malunga nazo naziphi na iimpembelelo ze-allergy, iimpawu zosulelo, kunye nentlungu/ukudumba kwindawo ehlatywe kuyo inaliti. Ukuba ubona nantoni na engaqhelekanga, yazisa ugqirha ngoko nangoko.
- Landela imiyalelo yokugcina amayeza (ingakumbi ukuwaqandisa) ngononophelo. Oku kubalulekile ukuze amayeza asebenze.
- Awuwedwa. Thetha ngokukhululekileyo neqela lakho lezonyango malunga neenkxalabo zakho kunye noloyiko lwakho xa ujongene nale meko ingaqhelekanga. Baza kukunika inkxaso oyifunayo.
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