Abanye abantwana, ingakumbi abo banesimo esingaqhelekanga esibizwa ngokuba yi-Alagille syndrome, banokuziva berhawuzelelwa lusu ngendlela enganyamezelekiyo. Akukho mazwi okuchaza ukungonwabi abakufumanayo. Ngoko ke, elinye iyeza elikhethekileyo elinikwa ngoogqirha kwiimeko ezinjalo yiMaralixibat, edla ngokuthengiswa phantsi kwegama lebrendi elithi Livmarli. Ukuba wena okanye umntwana wakho ninikwe eli yeza, ninokuba neenkxalabo ezininzi nemibuzo ngalo. Masithethe ngako konke oku ngokulula nangobubele namhlanje.
Kalula nje, kwenzeka ntoni ngeli yeza leMaralixibat?
Kulungile, igama lezonyango lale ngxaki lisenokuvakala liyinkimbinkimbi. I-Maralixibat sisiyobisi esikudidi lwamayeza abizwa ngokuba yi-ileal bile acid transporter (IBAT) inhibitors. Ngoku, musa ukudideka, ndiza kuyichaza ngokulula.
Khawucinge nje, i-bile eveliswa sisibindi emzimbeni wethu iqulethe into ebizwa ngokuba yi-bile acids. Kwi-Alagille syndrome, ezi-bile acids azikhutshwa kakuhle emzimbeni kodwa ziqokelelana egazini. Xa inqanaba le-bile acids egazini lisanda, kuvela ukurhawuzelela okukhulu eluswini.
Ngoko ke into eyenziwa leli yeza leMaralixibat kukulawula ukufunxwa kwezi acid ze-bile emzimbeni zisuka emathunjini. Ngokuchanekileyo, lithintela loo nkqubo. Emva koko inani le-bile acids egazini liyancipha, kwaye kancinci kancinci loo ngxaki yolusu nayo iyalawulwa. Uyaqonda?
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale amayeza
Kubaluleke kakhulu ukuba ugqirha wakho aqaphele imeko yakho yonke yempilo ngaphambi kokuba akunike eli yeza. Ngoko ke, ukuba unenye yezi meko zilandelayo, qiniseka ukuba uxelele ugqirha wakho.
- Ukuba sele ufunyenwe unezinga eliphantsi leevithamini A, D, E, okanye K egazini lakho.
- Ukuba ukhulelwe, okanye unethemba lokukhulelwa kungekudala.
- Ukuba ungumama oncancisa umntwana.
Ngokusekelwe kolu lwazi, ugqirha uya kumisela isicwangciso sonyango esifanelekileyo kuwe.
Ndingayisebenzisa njani kanye kanye le yeza?
Esi sisisombululo esithathwa ngomlomo. Ukuze ufumane okuninzi kwiyeza, kubalulekile ukulisebenzisa ngokuchanekileyo.
- Ixesha: Oku kufanele kuthathwe ngexesha elifanayo yonke imihla, imizuzu engama-30 ngaphambi kwesidlo sokuqala sosuku.
- Umlinganiselo: Sebenzisa kuphela isirinji, icephe, okanye idropha yomlomo ekhethekileyo eza neli yeza ukuyilinganisa. Musa ukusebenzisa iitisipuni eziqhelekileyo okanye iisuphu zesuphu ekhaya nangasiphi na isizathu, kuba aziyi kulinganisa umthamo ochanekileyo.
- Kunye namanye amayeza: Ukuba usebenzisa amanye amayeza (ii-bile acid binding resins) ezifana ne-cholestyramine okanye i-colesevelam, kufuneka kubekho ubuncinane iiyure ezi-4 phakathi kokuwasebenzisa kunye nala mayeza e-Maralixibat.Kufuneka uyigcine. Oko kuthetha ukuba kufuneka usele elinye iyeza nokuba ziiyure ezi-4 emva kokuba usele iMaralixibat okanye iiyure ezi-4 ngaphambi koko. Thetha nogqirha wakho ngale nto uze ucacise ngakumbi.
- Imiyalelo Yokusetyenziswa: Funda imiyalelo yokusebenzisa eza neyeza ngononophelo. Ukuba kukho into ongayiqondiyo, buza ugqirha wakho.
Eli yeza linokunikwa abantwana abaneminyaka eli-1 ubudala kwiimeko ezithile ezikhethiweyo. Nangona kunjalo, kufuneka kulandelwe amanyathelo akhethekileyo okhuseleko. Ke ngoko, ukuba unika umntwana eli yeza, landela imiyalelo kagqirha ngokuchanekileyo.
Kuthekani ukuba ndiphoswa lidosi leyeza?
Ngenxa yokuxakeka kobomi, kunokwenzeka ukuba ulibale ukuthatha idosi yamayeza. Ukuba oko kuyenzeka, yithathe ngokukhawuleza xa ukhumbula. Nangona kunjalo, ukuba kudlule iiyure ezingaphezu kwe-12 emva kwexesha olithathayo, yitsibe idosi ephosiweyo. Thatha idosi elandelayo ngexesha elicwangcisiweyo. Ungaze uthathe iidosi ezimbini ngaxeshanye ukuze ubuyisele idosi ephosiweyo.
Wenza ntoni ukuba uthatha amayeza amaninzi kakhulu?
Ukuba ucinga ukuba uthathe amayeza amaninzi kakhulu, ungoyiki kwaye ngoko nangoko yiya kwiCandelo loNyango oluNgxamisekileyo (ETU) lesibhedlele esikufutshane. Okanye utsalele umnxeba iZiko loLwazi lweePoisons kwiSibhedlele sikaZwelonke saseColombo ukuze ufumane ingcebiso.
Iziphumo ebezingalindelekanga ezinokubakho xa uthatha iyeza
Njengakweminye imithi, kukho iziphumo ebezingalindelekanga xa usebenzisa iMaralixibat. Ezinye zezi zinokuba yingozi, ngoko ke kubalulekile ukuba uzazi.
| Imiphumela | Iimpawu |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka uzixele kugqirha wakho ngoko nangoko | |
| Iimpendulo eziqatha ze-allergy | Ukurhawuzelela kwesikhumba, amaqhuqhuva, ukurhawuzelela; ukudumba kobuso, imilebe okanye ulwimi. |
| Ukulimala kwesibindi | Ukutyheli kwamehlo okanye ulusu; umchamo otyheli okanye omdaka omnyama; iintlungu kwinxalenye ephezulu ngasekunene yesisu; ukungabi namdla wokutya; ukudinwa okungaqhelekanga. |
| Ukopha kwesisu | Indle enegazi okanye ehlala ixesha elide; ukuhlanza igazi elimdaka okanye elibonakala ngathi ligayiwe yikofu. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Urhudo | Ukuqunjelwa. |
| Intlungu yesisu | Intlungu yesisu okanye ukungakhululeki. |
| Ukuhlanza kunye neSicaphucaphu | Ukuhlanza okanye ukuziva ngathi ufuna ukuhlanza. |
Ezinye izinto ezinokusebenzisana namayeza
Amanye amayeza owasebenzisayo anokuchaphazela indlela esebenza ngayo iMaralixibat. Ngoko ke, kubalulekile ukuxelela ugqirha wakho ngawo onke amayeza owasebenzisayo (kuquka iivithamini, amayeza esintu, kunye nezongezo). Lumka ngakumbi ngala mayeza alandelayo:
- Iiresini zokubopha i-bile acid: Umzekelo, i-cholestyramine, i-colesevelam, i-colestipol.
- Amanye amayeza asetyenziselwa ukunciphisa i-cholesterol: umzekelo, i-atorvastatin, i-lovastatin, i-simvastatin.
Uligcina kwaye ulisusa njani iyeza?
- Indawo yokugcina: Gcina ibhotile yamayeza kwindawo ekhuselekileyo kude nabantwana nezilwanyana zasekhaya. Gcina kubushushu begumbi (phakathi kwama-20-25 degrees Celsius). Okubaluleke kakhulu, lahla naliphi na iyeza eliseleyo emva kweentsuku ezingama-45 emva kokuvula ibhotile.
- Ukulahlwa: Ukuze ulahle amayeza aphelelwe lixesha okanye angafunekiyo, buza ikhemesti yakho okanye isibhedlele malunga nenkqubo eza kuwamkela. Ukuba akunjalo, jonga ileyibhile ukuze ubone ukuba kulungile na ukulahla amayeza enkunkuma.Ungaze uhlambe amayeza endlwini yangasese ngaphandle kokubonisana nogqirha wakho kuqala. Ukuba uza kuwalahla enkunkuma, khupha amayeza ebhotileni, uwaxube nento efana nekofu esetyenzisiweyo, umhlaba omncinci, okanye inkunkuma yekati, uze uwafake ebhegini evalwe kakuhle uze uwalahle enkunkuma.
Umyalezo Wokuya Ekhaya
- I-Maralixibat (iLivmarli) liyeza elikhethekileyo elinyanga ukurhawuzelelwa kakhulu lusu okubangelwa yi-Alagille syndrome.
- Sela eli yeza ngexesha elifanayo yonke imihla, imizuzu engama-30 ngaphambi kwesidlo sokuqala sosuku. Sebenzisa isirinji ekhethekileyo eza neyeza ukulilinganisa.
- Xelela ugqirha wakho ngazo zonke ezinye iindlela ozisebenzisayo (ingakumbi amayeza e-cholestyramine kunye ne-cholesterol-thinning).
- Funa uncedo lwezonyango ngokukhawuleza ukuba ufumana iimpawu ze-allergy ezinzima, iimpawu zokonakala kwesibindi (ukutyheli kwamehlo/ulusu, umchamo omnyama), okanye iimpawu zokopha esiswini (indle emnyama).
- Kubalulekile ukubona ugqirha wakho ngeentsuku ezicwangcisiweyo ukuze ujonge amanqanaba eevithamini zakho kunye nokusebenza kwesibindi sakho ngelixa usela amayeza.
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