Ukuba umntwana wakho unesifo sesibindi esibizwa ngokuba yiPFIC (Progressive Familyal Intrahepatic Cholestasis), kufuneka ukuba uqaphele ukuba uhlala ekrwela umzimba wakhe. Ngamanye amaxesha akakwazi nokulala, kwaye uyakrwela umzimba wakhe de ulusu lwakhe luqhekeke. Eli liva elibuhlungu kakhulu nelibangela uxinzelelo kumntwana kunye nawe njengomzali. Ngoko ke, iyeza elikhethekileyo elicetyiswa ngoogqirha ukulawula ukurhawuzelelwa kolusu okunganyamezelekiyo yiOdevixibat (igama eliyiBylvay). Namhlanje, siza kuthetha ngale yeza, indlela yokulinika umntwana wakho, kunye nezinto ekufuneka uzilumkele.
Luhlobo luni lonyango i-Odevixibat?
Ngamafutshane, i-Odevixibat liyeza elikwiqela lamayeza abizwa ngokuba yi-Ileal Bile Acid Transporter (IBAT) Inhibitors . Cinga ngale ndlela: ii-bile acids, ulwelo oluveliswa sisibindi sethu olunceda ekugayeni ukutya, ziphinda zifunxwe emathunjini ethu. Kwiimeko ezifana ne-PFIC, le bile iyaqokelelana emzimbeni, nto leyo ebangela ukurhawuzelelwa okunganyamezelekiyo.
Ngoko ke into eyenziwa leli yeza le-Odevixibat kukuthintela inyongo ukuba ingaphindi ingene emzimbeni isuka emathunjini. Emva koko inyongo engaphezulu emzimbeni ikhutshwa kunye nendle. Ngenxa yale nkqubo, ukurhawuzelelwa kwesikhumba okunganyamezelekiyo (pruritus) okuza nesifo se-PFIC kuyancipha kakhulu, nto leyo enika umntwana isiqabu esikhulu.
Izinto ezibalulekileyo omele uzixelele ugqirha wakho ngaphambi kokuba uqale amayeza
Ngaphambi kokuba umntwana wakho anikwe i-Odevixibat, kubalulekile ukuxelela ugqirha wakho olu lwazi. Oku kubaluleke kakhulu kukhuseleko lomntwana wakho.
| Ulwazi ekufuneka ulunike | Kutheni kubalulekile? |
|---|---|
| Ukuba kuye kwaxelwa amanqanaba aphantsi eevithamini A, D, E, okanye K. | Eli yeza linokunciphisa ukufunxwa kweevithamini ezinyibilikayo ngamafutha ukuya kwinqanaba elithile. Ke ngoko, ukuba sele ungenazo iivithamini ngokwaneleyo, ugqirha wakho kufuneka azi ngale nto. |
| Ukuba une-allergies kwi-Odevixibat okanye nakweyiphi na enye imithi okanye ukutya. | Oku kubalulekile ukuze kuhlolwe umngcipheko wokuba umntu angabi namdla wokusebenzisa amayeza aze anyangwe ngokukhuselekileyo. |
| Ukuba ukhulelwe, uzama ukukhulelwa, okanye uncancisa. | Kwezi meko, kubalulekile ukuxoxa ngokhuseleko lwamayeza nogqirha size senze izigqibo ngokusekelwe kwingcebiso yakhe. |
Umnika njani umntwana eli yeza?
Le yinxalenye ebaluleke kakhulu. Qonda kakuhle indlela yokunika iyeza.
- Eli yeza liza likwimo yekhaphu, kodwa alenzelwanga ukuba liginywe liphelele .
- Khumbula ukusela amayeza akho ngexesha elifanayo yonke imihla , njengoko ugqirha wakho ekuyalele. Ngokwesiqhelo, kuyacetyiswa ukuba uwasele kusasa kunye nokutya.
- Inyathelo 1: Vula i-capsule ngononophelo. Beka ii-pellets ngaphakathi kwipuni okanye ezimbini zokutya okuthambileyo. Umzekelo, ungasebenzisa iyogathi, ibhanana ecoliweyo, okanye isosi ye-applesauce.
- Inyathelo lesi-2: Nje ukuba amayeza nokutya kuxutywe, vumela umntwana akuginye. Ungaze umvumele umntwana ahlafune iipilisi okanye ukutya axutywe nako.
- Inyathelo lesi-3: Musa ukuxuba eli yeza nezinto ezilulwelo, ezinje ngamanzi, ubisi, okanye iziselo, nangasiphi na isizathu.
- Kubalulekile: Ukuba umntwana wakho usebenzisa amanye amayeza (ii-bile acid binding resins) ezifana neCholestyramine okanye iColesevelam, i-Odevixibat kufuneka inikwe iiyure ezi-4 ngaphambi okanye iiyure ezi-4 emva kwayo. Buza ugqirha wakho imiyalelo ethile.
- Musa ukuyeka ukusebenzisa amayeza de ugqirha wakho akuxelele ukuba uwasebenzise. Eli yeza limiselwe wena wedwa, ungalabelani ngalo nabanye abantu.
Ukuba uphoswe yidosi, ungakhathazeki. Thatha idosi ephoswe ngokukhawuleza xa ukhumbula. Nangona kunjalo, ukuba sele kusondele ixesha ledosi yakho elandelayo, yitsibe idosi ephoswe kwaye uthathe idosi elandelayo ngexesha elicwangcisiweyo. Ungaze uthathe idosi ephindwe kabini.
Izinto ekufuneka uzilumkele xa usebenzisa amayeza
- Bona ugqirha rhoqo: Ufanele ubonane nogqirha ngeentsuku ezicwangcisiweyo ukuze ujonge ukuba umntwana wakho uphila njani kwaye nokuba amayeza ayasebenza na.
- Uvavanyo lweGazi: Ngelixa umntwana wakho esela eli yeza, kuya kufuneka enziwe uvavanyo lwegazi ukujonga ukusebenza kwesibindi sakhe kunye namanqanaba eevithamini.
- Iivithamini kunye nesondlo: Kubalulekile ukuqinisekisa ukuba umntwana wakho ufumana iivithamini azidingayo (ingakumbi u-A, u-D, u-E, kunye no-K). Thetha nogqirha womntwana wakho malunga nokutya komntwana wakho kunye nazo naziphi na iivithamini ezongezelelweyo.
Ufanele wenze ntoni ukuba uthatha amayeza amaninzi kakhulu? (Ukusebenzisa amayeza amaninzi kakhulu)
Ukuba unesikrokro sokuba umntwana wakho unikwe amayeza angaphezulu kunokuba ucinga, musa ukuchitha ixesha kwaye ngoko nangoko fowunela iZiko loLwazi lweeTyhefu leSizwe kwiSibhedlele sikaZwelonke saseColombo. Okanye, thatha umntwana wakho uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengazo zonke amayeza, le inokuba nemiphumo emibi. Asinguye wonke umntu oyifumanayo, kodwa kubalulekile ukuba uzazi.
| Imiphumela | Inkcazo |
|---|---|
| Iziphumo ebezingalindelekanga ekufuneka uzixele kugqirha wakho ngoko nangoko | |
| Iimpendulo ze-Allergic | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kwemilebe, ubuso okanye ulwimi, ubunzima bokuphefumla. |
| Iimpawu Zokwenzakala Kwesibindi | Ukutyheli kwamehlo okanye ulusu, umchamo otyheli/omdaka omnyama, iintlungu kwinxalenye ephezulu ngasekunene yesisu, ukungabi namdla wokutya, ukudinwa kakhulu. |
| Urhudo oluqatha | Isihlalo esikhululekileyo rhoqo. |
| Ukuba iyaqhubeka okanye iyakhathaza, xelela ugqirha wakho. | |
| Intlungu yesisu | Intlungu yesisu eqhelekileyo. |
| Ukuhlanza | Ukuhlanza. |
Umyalezo Wokuya Ekhaya
- I-Odevixibat liyeza elikhethekileyo elisetyenziselwa ukulawula ukurhawuzelelwa kakhulu lusu okubangelwa sisifo se-PFIC.
- Musa ukuginya, ukuhlafuna, okanye ukutyumza eli yeza. Vula ikhaphu, xuba iipilisi ngaphakathi nokutya okuthambileyo, uze uginye ungahlafuni.
- Qiniseka ukuba uxelela ugqirha ukuba umntwana wakho unezinye izifo, i-allergies, okanye usebenzisa amanye amayeza.
- Ukuba ufumana iimpawu zokonakala kwesibindi (ukutyheli kwamehlo/ulusu, umchamo omnyama), urhudo olukhulu, okanye iimpembelelo ze-allergy, bona ugqirha wakho ngoko nangoko.
- Ukuba unemibuzo malunga namayeza, ungoyiki ukuthetha nogqirha wakho. Musa ukunyanga ngokuqikelela.
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