Bigenda bite iyo umubiri uhagaritse cyangwa uhagaritse gukora enzyme yihariye ifasha amagufwa n'amenyo yacu gukomera? Mu by'ukuri ntabwo byoroshye nkuko wabitekereza. Hypophosphatasia (HPP) ni indwara idakunze kugaragara mu buryo bw'uturemangingo . Rero, urukingo rwihariye rutangwa kugira ngo ruvure iyi ndwara rwitwa Asfotase Alfa. Uyu munsi, turaganira kuri uyu muti, uko ukoreshwa, icyo ugomba kwitondera, n'ibindi byose mu buryo bworoshye cyane.
Ni iki koko kigenda gitya kuri uyu muti?
Mu magambo make, ubu ni uburyo bwo kuvura indwara zisimbura imisemburo . Tekereza kuri ibi, kugira ngo ikintu kiri mu mubiri wacu gikore neza, kigomba kugira imisemburo ikenewe. Umuntu urwaye HPP afite ikibazo cy’iyi misemburo ifasha mu kubaka amagufwa n’amenyo akomeye. Rero, icyo inshinge za Asfotase Alfa zikora ni uguha umubiri imisemburo ibura hanze. Ibi ni nko gushyira amavuta mu modoka iyo umwuka ubuze. Imisemburo iva muri uru rushinge ifasha umubiri kongera kubaka amagufwa n’amenyo akomeye. Uyu muti kandi uraboneka ku isoko ku izina rya Strensiq.
Ibintu ugomba kubwira muganga wawe mbere yo gufata umuti
Mbere yo gutangira ubu buvuzi, ku bw'umutekano wawe, hari ibintu bike ugomba kumenyesha muganga wawe neza. Menya neza ko ubivuze.
- Allergies : Niba ufite allergies kuri uyu muti wa Asfotase Alfa, undi muti, ibiryo, imiti irinda ubushyuhe, cyangwa amarangi, banza utubwire.
- Gutwita : Niba utwite, cyangwa uteganya kubyara umwana vuba, bwira muganga wawe ibyabyo.
- Niba uri umubyeyi wonsa: Niba uri umubyeyi wonsa, ugomba no kubimenyesha muganga.
Guha muganga wawe aya makuru bizamufasha cyane kugufasha mu buryo butekanye kandi bunoze.
Uru rukingo rukoreshwa rute?
Uru rukingo rutangwa hakoreshejwe inshinge zo munsi y'umubiri .). Ariko nta mpamvu yo gutinya ibi. Uzigishwa uburyo bwo gutegura uru rukingo n'uburyo bwo kwitera inshinge neza. Muganga cyangwa abakozi b'abaforomo bazaguha amabwiriza asobanutse neza kuri urwo rukingo.
- Fata umuti uhawe neza neza nk'uko byavuzwe ku rupapuro, mu gipimo gikwiye, kandi mu gihe gikwiye.
- Komeza gukoresha uyu muti kugeza igihe muganga wawe azakubwiriye kubireka.
- Soma amabwiriza ari kumwe n'umuti witonze. Niba ufite ikibazo icyo ari cyo cyose, ntutindiganye kubaza muganga wawe.
Ni gute wajugunya inshinge n'inshinge zakoreshejwe?
Ibi ni ingenzi cyane. Ntukigere ujugunya inshinge n'inshinge zakoreshejwe mu myanda. Kubikora bishobora guteza akaga ku bandi. Ugomba gukoresha agakoresho kabigenewe, kitwa 'agakoresho karimo ibinini binini.' Niba udafite, baza muganga wawe uko wagafata.
Ni iki cyakorwa niba urugero rw'umuti rwiyongereye?
Niba ubona ko wafashe ikinini kirenze urugero, jya ku bitaro bikuru byita ku bibazo byihutirwa (ETU) bikwegereye vuba . Ubundi buryo, hamagara ikigo cy'igihugu gishinzwe amakuru ku burozi mu bitaro by'igihugu bya Colombo. Iki ni ikibazo cyihutirwa kandi ni ngombwa kugira icyo ukora vuba.
Bite ho nintakaza urugero rw'umuti?
Ntugahangayike. Niba wabuze dose, uyifate ako kanya wibuka. Ariko, niba igihe cyo gufata dose ikurikira kigeze, jya usimbuka dose ikurikira hanyuma ufate dose ikurikira ku gihe gisanzwe. Ntugafate dose ebyiri kugira ngo wishyure dose yabuze.
Ibintu ugomba kwitondera mu gihe ufata imiti
Ni ingenzi cyane gukomeza kugirana umubano wa hafi na muganga wawe muri ubu buryo bwose bwo kuvura.
- Kwisuzumisha buri gihe: Vugana na muganga wawe buri gihe kugira ngo urebe niba ibimenyetso byawe birimo kugenda neza cyangwa bigabanuka, n'uko umubiri wawe witabira kuvurwa. Jya kwa muganga ku matariki yandikiwe.
- Ibizamini by'ubuvuzi : Mu gihe ufata uyu muti, muganga wawe ashobora gukenera gupima amaraso n'inkari kugira ngo arebe uko impyiko zawe zikora neza no gukurikirana ibindi bintu. Ntugasimbuke ibi bizamini.
- Isuzuma ry'amaso : Urashobora gusuzumwa mbere no mu gihe cyo kuvurwa. Niba ubonye impinduka mu maso yawe (nk'amaso adasobanutse neza cyangwa adasobanutse neza), bwira muganga wawe ako kanya.
- Iyandikisho ry'abarwayi: Ushobora gutumirwa kwinjira mu iyandikwa ry'abarwayi ba HPP ry'igihe kirekire. Ibi bizagufasha gukusanya amakuru kugira ngo usobanukirwe neza indwara n'uburyo ivurwa. Ushobora kubaza muganga wawe amakuru arambuye.
Ni izihe ngaruka mbi zishobora kubaho?
Nk’uko bimeze ku muti uwo ari wo wose, uyu muti ushobora gutera ingaruka zimwe na zimwe. Ariko si buri wese uzibona. Reka tubicemo ibice bibiri.
| Ingaruka mbi | Ibisobanuro n'icyo gukora |
|---|---|
| Ingaruka mbi zikomeye zigomba kumenyeshwa muganga ako kanya | |
| Ubushobozi bwo kugira ubwivumbure | Shaka abaganga vuba niba ubonye ibimenyetso nko kurwara uduheri ku ruhu, kuribwa, kubyimba mu maso, ku minwa, ku rurimi, cyangwa mu muhogo, cyangwa kugorwa no guhumeka. |
| Amabuye mu mpyiko | Amaraso mu nkari, ububabare cyangwa ingorane zo kunyara, ububabare mu mugongo wo hasi cyangwa mu kibuno. Bibwire muganga wawe niba ufite kimwe muri ibi. |
| Gutakaza icyerekezo cyangwa impinduka | Niba ubonye impinduka zitunguranye mu maso yawe, menyesha muganga wawe ako kanya. |
| Ibintu ubusanzwe bitari biteje akaga, ariko bigomba kumenyeshwa muganga mu gihe bikomeje | |
| Impinduka mu gace katewemo inshinge | Kubabara, gutukura, uburyaryate, cyangwa guhindura ibara ry'uruhu bishobora kubaho aho umuntu yatewe inshinge. |
| Lipodystrophy | Kubyimba, gukomera, cyangwa inkovu z'urugingo ruri munsi y'uruhu aho rwatewe inshinge. Niba ibi bikomeje, menyesha muganga wawe. |
Ni gute nabika umuti?
Ni ingenzi cyane kubika uyu muti neza.
- Bika kure y'abana n'amatungo.
- Bika muri firigo. Ariko ntushyire muri firigo. Ntureke umuti ukonje.
- Rinda urumuri. Kubwibyo, komeza ubishyire mu ipaki yabyo y'umwimerere kugeza igihe uzabikoresha.
- Umaze gukuramo muri firigo, tanga urukingo mu masaha atatu .
- Kuraho imiti yarengeje igihe. Baza muganga wawe inama z'uburyo wakoresha imiti yarengeje igihe cyangwa itagikenewe mu buryo bwizewe.
Ubutumwa bwo kujyana mu rugo
- Asfotase Alfa ni urukingo rusimbura enzyme ruvura indwara ya Hypophosphatasia (HPP).
- Bwira muganga wawe ibyerekeye ubwivumbure bwawe bwose n'indwara zawe mbere yo gutangira kuvurwa.
- Menya uburyo bwo gutera urukingo neza no guta inshinge zakoreshejwe mu buryo bwizewe.
- Shaka abaganga vuba niba ugize ingaruka mbi nko kubyimba mu maso, guhumeka nabi, cyangwa impinduka mu maso.
- Ntugasimbuke ibizamini n'amatariki yatanzwe na muganga ku ivuriro.
- Buri gihe shyira umuti muri firigo, ukingiwe urumuri, kandi uri mu ipaki y'umwimerere.
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