Wenda wowe cyangwa umuntu wo mu muryango wawe mwabwiwe na muganga wawe ibijyanye n'umuti mushya utamenyerewe. Ushobora kwitwa Olipudase Alfa (Xenpozyme). Uyu si umuti usanzwe ukoreshwa cyane, dukunze kumva. Uyu ni umuti utangwa ku ndwara runaka. Niyo mpamvu ari ibisanzwe ko ugira ibibazo byinshi kuri wo. Ushobora kandi kuba ufite ibibazo nka "Bizagenda bite kuri uyu muti?", "Ese ibi ni umutekano?", "Ni ibihe bintu ugomba kwitondera?" Ntugahangayike, tuzavugana neza kandi mu buryo bwumvikana kuri uyu muti, icyo ukora, n'ibintu ugomba kwitondera.
Ni iki koko kigenda gitya kuri uyu muti?
Uyu muti ukoreshwa mu kuvura indwara idakunze kugaragara cyane mu ngirabuzimafatizo. Mu buvuzi, witwa aside Sphingomyelinase deficiency , cyangwa (ASMD) mu magambo ahinnye.
Muri make, abantu barwaye ASMD ntibakora enzyme ikorwa mu buryo busanzwe mu mibiri yabo. Enzyme ni ubwoko bwa poroteyine ifasha mu mikorere itandukanye ya shimi mu mibiri yacu. Iyo iyi enzyme ibuze, ubwoko bwihariye bwa lipide yitwa sphingomyelin butangira kwirundanya mu ngingo z'ingenzi nk'umwijima, urwagashya, n'ibihaha. Tekereza nk'umuyoboro w'amazi ufunganye n'umwanda amaherezo ugafungwa burundu.
Aha niho umuti witwa Olipudase Alfa ufasha. Icyo uyu muti ukora ni ugutanga enzyme ibura mu mubiri iturutse hanze. Ibi byitwa enzyme replacement therapy . Hanyuma ingano y'ibinure byiyongera bitari ngombwa iragabanuka buhoro buhoro, kwangirika kw'ingingo zikagenzurwa, kandi ibimenyetso biragabanuka.
Ibintu ugomba kubwira muganga wawe mbere yo gukoresha uyu muti
Mbere yo gutangira gufata uyu muti, ni ngombwa kumenyesha muganga wawe ibi bikurikira. Ntugahishe ibi bintu, kuko ari ingenzi cyane ku mutekano wawe.
- Niba ufite ubwivumbure kuri uyu muti, Olipudase alfa, undi muti uwo ari wo wose, ibiryo, amarangi cyangwa imiti yo kubungabunga ibiryo yongewe ku biryo.
- Niba utwite, cyangwa utegereje umwana mu gihe cya vuba , iki ni ikintu cy'ingenzi cyane. Reka tubiganireho birambuye.
- Niba uri umubyeyi wonsa .
Uburyo bwo gutanga umuti n'ibyo ugomba kumenya
Uyu muti utangwa nk'urushinge mu mitsi. Mu by'ukuri, uterwa mu mubiri unyuze mu mitsi, nk'umuti wa saline. Ubusanzwe iki gikorwa gikorerwa mu bitaro cyangwa mu ivuriro, munsi y'ubuyobozi bwa muganga cyangwa abakozi b'abaforomo bahuguwe.
Ariko, hari ubwo ushobora kuyisanga mu rugo. Niba ari uko bimeze, uzahabwa amahugurwa arambuye ku buryo bwo kuyitegura neza n'uburyo bwo kuyitera. Ugomba gukurikiza amabwiriza neza nk'uko muganga abikubwira.
Guta inshinge n'inshinge
Ntukajugunye inshinge n'inshinge ukoresha mu rugo mu myanda isanzwe . Hari agasanduku kabigenewe ko kuzikoresha. Niba udafite, baza muganga wawe cyangwa ibitaro ku bijyanye na byo.
Ese ibi urabiha abana bato?
Yego, uyu muti ushobora kwandikirwa abana bavutse ndetse n'abana bafite indwara runaka. Ariko hari ibintu bike ugomba kwitondera. Kubwibyo, niba uha umwana uyu muti, ganira na muganga neza kandi umusobanurire byose.
Ni iki cyakorwa niba ingano y'imiti yiyongereye?
Niba utekereza ko warengeje urugero rw'umuti, ntugatinye kandi uhite uhamagara Ikigo cy'Igihugu gishinzwe gutanga amakuru ku burozi mu Bitaro by'Igihugu , cyangwa ujye mu Kigo cyita ku Buvuzi bwihutirwa (ETU) cy'ibitaro biri hafi yawe.
Ibintu byihariye ugomba kwitondera n'ingaruka mbi
Mu gihe ufata uyu muti, muganga wawe azagusaba kuza kwisuzumisha buri gihe kugira ngo akurikirane uko umeze. Bazakenera kandi gukora ibintu nko gukora isuzuma ry'amaraso. Bishobora gufata igihe kugira ngo wumve ibyiza byose by'uyu muti, bityo ni ngombwa kwihangana mu kuvura kwawe.
Hari abantu bashobora kugira allergie ikomeye cyangwa se ingaruka zo guterwa iyo bahawe uyu muti. Kugira ngo ugabanye ibi byago, muganga wawe ashobora kuguha indi miti (nka piritan) mbere yo kuguha uyu muti. Kurikiza amabwiriza neza.
Gutwita no kuboneza urubyaro: Iki ni ikintu cy'ingenzi cyane. Gufata uyu muti mu gihe utwite bishobora gutera ibibazo bikomeye ku mwana utwite. Kubwibyo, ni ngombwa gukoresha uburyo bukwiye bwo kuboneza urubyaro mu gihe ufata uyu muti no mu minsi 14 nyuma yo guhagarika uyu muti. Vugana na muganga wawe kuri ibi hanyuma uhitemo uburyo bukubereye.
Imbonerahamwe iri hepfo igaragaza ubwoko bw'ingaruka mbi zishobora kubaho kuri uyu muti.
| Ingaruka mbi z'urukingo rwa Olipudase Alfa | |
|---|---|
| Ingaruka mbi zikomeye ugomba guhita umenyesha muganga wawe | |
| Indwara z'ubwivumbure cyangwa indwara ya angioedema | Uruhu rushyushye, kuribwa, kubyimba mu maso, mu maso, mu minwa, mu rurimi, mu maboko cyangwa mu birenge, kugorwa no kumira cyangwa guhumeka. |
| Uburyo bwo gutera umuti | Kubabara mu gituza, kugorwa no guhumeka, gucika intege, kumva umeze nk'uzunguza. |
| Ibimenyetso by'indwara y'umwijima | Kubabara mu gice cyo hejuru cy'iburyo cy'igifu, kubura ubushake bwo kurya, isesemi, amabyi y'ibara ryoroheje, inkari z'umuhondo wijimye cyangwa umukara, amaso cyangwa uruhu bihinduka umuhondo, umunaniro udasanzwe. |
| Ingaruka mbi ubusanzwe zitari zikomeye, ariko zigomba kumenyeshwa muganga mu gihe zikomeje | |
| Ibindi bintu | Inkorora, impiswi (kwibyimba), umuriro, kuribwa umutwe, kubabara mu ngingo, isesemi, kuruka. |
Ese hari ibibazo biri mu yindi miti?
Uko tubizi, uyu muti nta bimenyetso byatanzwe bigaragaza ko utera ingaruka zikomeye ku yindi miti. Ariko, ntugatekereze ko ari ko bimeze. Ha muganga wawe urutonde rwuzuye rw'imiti yose ufata (harimo na vitamine, imiti y'ibimera, n'inyongeramusaruro). Nanone, menya neza ko wabibwiye muganga wawe niba unywa itabi cyangwa unywa inzoga.
Ubutumwa bwo kujyana mu rugo
- Olipudase Alfa ni uburyo bwihariye bwo kuvura indwara idakunze kugaragara yitwa ASMD, bukoresha enzymes.
- Ibi bitangwa nk'urushinge mu mitsi, akenshi mu bitaro.
- Mbere yo gutangira kuvurwa, bwira muganga wawe ibyerekeye indwara zose ziterwa n'ubwivumbure, gahunda zo gutwita, n'indi miti yose ufata.
- Mu gihe ufata uyu muti, wirinde ibimenyetso by'ubwivumbure bukomeye, ingaruka zo guterwa inshinge, cyangwa kwangirika k'umwijima (urugero: uruhu ruhinduka umuhondo, inkari zijimye). Bibwire muganga wawe vuba niba ubonye kimwe muri ibi bimenyetso.
- Irinde gutwita mu gihe ufata uyu muti. Vugana na muganga wawe ku bijyanye no kuboneza urubyaro bikwiye.
- Kurikiza amabwiriza ya muganga wawe neza kandi witabire gahunda zose zagenwe zo kwa muganga.
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