Kana mwana wako mudiki aine chirwere chechiropa chinonzi PFIC (Progressive Familyal Intrahepatic Cholestasis), unofanira kunge wakaona kuti anogara achikwenya muviri wake. Dzimwe nguva haakwanise kurara, uye anokwenya muviri wake kusvika ganda rake rava kukwenya. Ichi chiitiko chinorwadza uye chinoshungurudza kumwana pamwe chete newe semubereki. Saka, mushonga unokurudzirwa navanachiremba kudzora kuvaviwa kweganda uku kusingatsungiririki ndiOdevixibat (zita rekuti Bylvay). Nhasi, tichataura nezvemushonga uyu, mapirwo aunoupa kumwana wako, uye zvinhu zvekungwarira nezvazvo.
Mushonga werudzii weOdevixibat?
Muchidimbu, Odevixibat mushonga uri muboka remishonga inonzi Ileal Bile Acid Transporter (IBAT) Inhibitors . Funga nezvazvo nenzira iyi: bile acids, mvura inogadzirwa nechiropa chedu inobatsira kugaya chikafu, inotorwazve muura hwedu. Mumamiriro ezvinhu akaita sePFIC, bile iyi inoungana mumuviri, zvichikonzera kuvaviwa kusingatsungiririki.
Saka mushonga uyu weOdevixibat unoshanda kudzivirira kuti nyongo irege kupinda mumuviri ichibva muura. Zvadaro nyongo iri mumuviri inobuda pamwe chete netsvina. Nekuda kweizvi, kuvaviwa kweganda kusingatsungiririki (pruritus) kunouya nechirwere chePFIC kunodzikira zvikuru, zvichipa mwana zororo guru.
Zvinhu zvinonyanya kukosha zvekuudza chiremba wako usati watanga mushonga
Usati wapa mwana wako Odevixibat, zvakakosha kuudza chiremba wako ruzivo urwu. Izvi zvakakosha zvikuru pakuchengetedza mwana wako.
| Ruzivo rwaunoda kupa | Sei zvichikosha? |
|---|---|
| Kana huwandu hwakaderera hwevhitamini A, D, E, kana K hwataurwa. | Mushonga uyu unogona kuderedza kunyudzwa kwemavhitamini anonyungudika mumafuta kusvika pamwero wakati. Saka, kana usina mavitamini akawandisa, chiremba wako anofanira kuziva izvi. |
| Kana uine allergies kune Odevixibat kana chero imwe mishonga kana chikafu. | Izvi zvakakosha kuti uongorore njodzi yekusawirirana nemishonga uye kuti uirapwe zvakachengeteka. |
| Kana uine pamuviri, uchiedza kubata pamuviri, kana kuti uchiyamwisa. | Muzviitiko izvi, zvakakosha kukurukura nezvekuchengetedzwa kwemushonga nachiremba uye kuita sarudzo zvichibva pane zvaanotaura. |
Munopa sei mwana mushonga uyu?
Ichi chikamu chakakosha zvikuru. Nzwisisa mashandisirwo chaiwo ekupa mushonga.
- Mushonga uyu unouya uri muchimiro chekapusule, asi haufanirwe kumedzwa wese .
- Rangarira kutora mushonga wako panguva imwe chete zuva nezuva , sezvakarairwa nachiremba wako. Kazhinji, zvinokurudzirwa kuutora mangwanani pamwe chete nechikafu.
- Danho 1: Vhura kapusule nokungwarira. Isa mapellets mukati muchipunu chimwe chete kana zviviri zvechikafu chakapfava. Semuenzaniso, unogona kushandisa yogati, bhanana rakapwanywa, kana applesauce.
- Danho rechipiri: Kana mushonga nechikafu zvasanganiswa, rega mwana amedze. Usamborega mwana achitsenga mapiritsi kana chikafu chaakasanganiswa nacho.
- Danho rechitatu: Usasanganise mushonga uyu nezvinwiwa, zvakaita semvura, mukaka, kana zvinwiwa, chero chikonzero chipi zvacho.
- Zvakakosha: Kana mwana wako achitora mimwe mishonga (bile acid binding resins) yakadai seCholestyramine kana Colesevelam, Odevixibat inofanira kupihwa maawa mana isati yasvika kana maawa mana mushure mayo. Bvunza chiremba wako kuti akupe mirairo chaiyo.
- Usarega kutora mushonga kusvika chiremba wako akuudza kuti udaro. Mushonga uyu wakanyorerwa iwe chete, usaugovana nevamwe.
Kana ukarasikirwa nedosi, usazvidya moyo. Inwa dosi yawakarasikirwa nayo nekukurumidza paunenge uchiyeuka. Zvisinei, kana yava nguva yekutora dosi yako inotevera, siya dosi yawakarasikirwa nayo wotora dosi inotevera panguva yakatarwa. Usambofa watora dosi yakapetwa kaviri.
Zvinhu zvekungwarira paunenge uchitora mushonga
- Ona chiremba nguva dzose: Unofanira kuona chiremba pamazuva akarongwa kuti utarise kuti mwana wako ari sei uye kana mushonga wacho uchishanda.
- Kuongororwa Kweropa: Paanenge achitora mushonga uyu, mwana wako achafanirwa kuongororwa ropa kuti aone mashandiro echiropa chake uye huwandu hwemavhitamini.
- Mavhitamini uye Kudya Kunovaka Muviri: Zvakakosha kuve nechokwadi chekuti mwana wako ari kuwana mavitamini aanoda (kunyanya A, D, E, naK). Taura nachiremba wemwana wako nezvekudya kwemwana wako uye mamwe mavitamini.
Chii chaunofanira kuita kana ukatora mushonga wakawandisa? (Kunyanya kushandisa mushonga)
Kana muine fungidziro diki yekuti mwana wenyu akapihwa mushonga wakawanda kupfuura zvamunofunga, musatambisa nguva uye fonerai National Poisons Information Centre paColombo National Hospital nekukasika. Neimwe nzira, endesai mwana wenyu kuEmergency Treatment Unit (ETU) yechipatara chiri pedyo.
Ndezvipi zvingakonzera migumisiro yakaipa?
Kufanana nemishonga yese, iyi inogona kuva nemigumisiro yakaipa. Haasi munhu wese anowana, asi zvakakosha kuti uizive.
| Mhedzisiro yedivi | Tsananguro |
|---|---|
| Migumisiro yaunofanira kuudza chiremba wako nekukasika | |
| Kusawirirana neAllergy | Mapundu paganda, kuvaviwa, kuzvimba kwemiromo, kumeso kana rurimi, kuoma kufema. |
| Zviratidzo zveKukuvara kwechiropa | Kutsvuka kwemaziso kana ganda, weti yero/brown yakasviba, kurwadziwa kumusoro kwedumbu kurudyi, kushaya chido chekudya, kuneta kwakanyanya. |
| Manyoka akanyanya | Kugara uchitsvedza zvituru. |
| Kana zvikaramba zvichiitika kana kuti zvichikunetsa, udza chiremba wako. | |
| Kurwadziwa kwedumbu | Kurwadziwa kwemudumbu kwakajairika. |
| Kurutsa | Kurutsa. |
Mharidzo Yekuenda Nayo Kumba
- Odevixibat mushonga unoshandiswa kudzora kuvaviwa kwakanyanya kweganda kunokonzerwa nechirwere chePFIC.
- Usamedze, kutsenga, kana kupwanya mushonga uyu. Vhura kapisiyu, sanganisa mapiritsi ari mukati nechikafu chakapfava, wobva wamedza usingatsengi.
- Iva nechokwadi chekuudza chiremba kana mwana wako aine zvimwe zvirwere, allergies, kana kuti ari kutora mimwe mishonga.
- Kana ukaona zviratidzo zvekukuvadzwa kwechiropa (maziso/ganda richitsvuka, weti yakasviba), manyoka akanyanya, kana kuti zviratidzo zvekusawirirana, ona chiremba wako nekukasika.
- Kana muine mibvunzo nezvemushonga uyu, musatya kutaura nachiremba wenyu. Musarape zvichibva pakufungidzira.
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