Ese muganga wawe yaba yarakubwiye cyangwa umuntu wo mu muryango wawe ufite indwara ya Pompe kandi ko ugomba gutangira gufata urukingo rwitwa Avalglucosidase Alfa nk'ubuvuzi? Ni ibisanzwe kumva ufite ubwoba no guhangayika iyo wumvise izina nk'iri. Ariko ntugahangayike. Muri iyi nkuru, turaganira ku muti uwo ari wo, icyo ukora, n'icyo tugomba kwitondera.
Uyu muti ni iki mu by'ukuri? (Avalglucosidase Alfa ni iki?)
Muri make, Avalglucosidase Alfa ni kopi ya enzyme ikorwa n'abantu ikorerwa mu mibiri yacu mu buryo busanzwe. Icuruzwa ku izina rya Nexviazyme . Iri mu bwoko bw'ubuvuzi bwitwa Enzyme Replacement Therapy .
Tekereza ku ndwara ya Pompe ni indwara aho inenge mu mubiri wacu igabanya cyangwa igakuraho burundu ikorwa rya enzyme runaka. Iyo iyi enzyme ibuze, ubwoko bw'isukari yitwa glycogen itangira kwirundanya mu turemangingo twacu, cyane cyane uturemangingo tw'imitsi. Uku kwirundanya guterwa n'ibimenyetso nko kunanirwa kw'imitsi no kugorwa no guhumeka.
Rero icyo uru rukingo rwa Avalglucosidase Alfa rukora ni uguha umubiri enzyme ibura iturutse hanze. Ni nko kuzuza ikigega amazi aturutse hanze. Ariko ibi ntibishobora gukiza indwara burundu. Ariko, ubu buryo bwo kuvura bufasha cyane mu kugenzura ibyangiritse biterwa n’iyi ndwara no kugabanya ibimenyetso no koroshya ubuzima.
Ibintu ugomba kubwira muganga wawe mbere yo gufata imiti
Ni ngombwa cyane kuganira na muganga wawe ku mateka y’ubuzima bwawe bwose mbere yo gutangira ubu buvuzi. Cyane cyane ugomba kuvuga kimwe muri ibi bikurikira:
| Indwara cyangwa amahirwe | Kuki ugomba gutanga amakuru? |
|---|---|
| Indwara z'umutima cyangwa indwara y'umutima | Kubera ko uyu muti ushobora kugira ingaruka ku kuringaniza amazi mu mubiri, ni ngombwa kumenya indwara z'umutima. |
| Indwara y'ibihaha | Iyo hari ibyago byo kugorwa no guhumeka, itsinda ry’abaganga rikwiye kubyitondera cyane. |
| Kurwara ubwivumbure ku yindi miti, ibiryo, cyangwa ibindi bintu | Ni ngombwa kumenya niba ufite ubwivumbure kuri Avalglucosidase Alfa cyangwa ikindi kintu kiri muri yo. |
| Niba utwite cyangwa ugerageza gutwita | Ugomba kuganira na muganga wawe ku mutekano w'uyu muti mu gihe utwite. |
| Niba umwana yonsa | Ni ngombwa gushaka inama kwa muganga ku bijyanye niba umuti ugera ku mwana binyuze mu mashereka. |
Uyu muti utangwa ute?
Avalglucosidase Alfa si umuti ushobora kujyana mu rugo. Ni urushinge rutangwa binyuze mu muti wa saline mu mitsi (guterwa mu mitsi) . Ibi bivuze ko ugomba kujya mu bitaro cyangwa ivuriro ryihariye kugira ngo uhabwe ubu buvuzi. Aho ngaho, umuganga cyangwa umuforomo wabyigiye azaguha urushinge.
- Ku bana bato: Ubu buvuzi rimwe na rimwe buhabwa abana barengeje umwaka umwe. Ariko, icyemezo gifatwa n'umuganga w'abana. Hakurikizwa ingamba zihariye zo kwirinda ibi.
- Bite ho nindamuka ntabonye dose? Ni ngombwa cyane gufata uyu muti ku itariki yagenwe. Niba usibye itariki yagenwe, hamagara muganga wawe ako kanya umubwire kugira ngo bashyireho gahunda yo kongera kubonana.
- Bite ho iyo dose yongerewe? Kubera ko ibi bitangwa mu bitaro, amahirwe yo kubigeraho ni make cyane. Ariko, niba ubona ko wafashe imiti myinshi cyane, ugomba kubimenyesha itsinda ry’abaganga ako kanya. Ubundi buryo, ushobora guhamagara Ikigo cy’Igihugu gishinzwe gutanga amakuru ku burozi mu bitaro by’igihugu bya Colombo cyangwa ukajya mu ishami rishinzwe kuvura byihutirwa (ETU) .
Ibintu ugomba kwitondera mu gihe ufata umuti
Nyuma yo gutangira kuvurwa, muganga wawe azagusuzuma buri gihe kugira ngo arebe uko umeze. Menya neza ko ugiye muri ibi bipimo. Niba ibimenyetso byawe bitameze neza cyangwa bisa n'aho birushaho kwiyongera, bwira muganga wawe.
Icy'ingenzi: Uyu muti ushobora gutera ubwivumbure bukomeye ku bantu bamwe na bamwe. Kugira ngo ugabanye ibi byago, muganga wawe ashobora kuguha indi miti (nk'umuti witwa piritan) mbere yo kuguha uru rukingo. Bityo rero kurikiza amabwiriza ya muganga wawe neza.
Ese bizahura n'indi miti?
Kugeza ubu nta raporo zigaragaza ingaruka zikomeye zigaragara hagati ya Avalglucosidase Alfa n'indi miti. Ariko, menya neza ko wabwiye muganga wawe imiti yose ufata (harimo n'imiti ivura izindi ndwara, vitamine, imiti y'ibimera, n'inyongeramusaruro) . Bibwire kandi muganga wawe niba unywa itabi cyangwa unywa inzoga, kuko bimwe muri ibi bintu bishobora kugira ingaruka ku buvuzi bwawe.
Ni izihe ngaruka mbi zishobora guterwa n'umuti?
Nk'uko bimeze ku muti uwo ari wo wose, uyu ushobora kugira ingaruka zimwe na zimwe. Ariko si buri wese uzibona. Reka tubicemo ibice bibiri.
| Ingaruka mbi zigomba kumenyeshwa muganga ako kanya | |
|---|---|
| Ubushobozi bwo kugira ubwivumbure | Uruhu rushyushye, kuribwa, kubyimba mu maso, ku minwa cyangwa ku rurimi. |
| Guhumeka nabi | Guhumeka nabi, guhumeka vuba. |
| Kubabara mu gatuza | Kumva igituza gifunganye cyangwa gifunze. |
| Umuvuduko w'amaraso uri hasi | Kuzungera, kutabona neza, kumva nk'aho ushobora kugwa uhagaze, umunaniro ukabije. |
| Gusukura amazi | Guturika bitunguranye no kumva ubushyuhe mu maso no mu ijosi. |
| Ubusanzwe ntabwo ari ikibazo gikomeye (ariko bwira muganga wawe niba kigikomeje) | |
| Umutwe | Umutwe usanzwe. |
| Isesemi | Kumva ushaka kuruka. |
| Impiswi | Kubyimba mu nda. |
| Ububabare bw'imitsi cyangwa ingingo | Ububabare mu mitsi cyangwa ingingo. |
Uru rutonde ntirugaragaza ingaruka mbi zose zishobora kubaho. Niba uhuye n'ikintu kidasanzwe, ntutinye kubibwira muganga wawe.
Ubutumwa bwo kujyana mu rugo
- Avalglucosidase (Nexviazyme) ni uburyo bwo kuvura indwara ya Pompe mu buryo bwo gusimbuza enzymes. Ntabwo ivura indwara, ahubwo igenzura ibimenyetso byayo.
- Uyu muti utangwa mu bitaro nk'urushinge mu mitsi.
- Mbere yo gutangira kuvurwa, bwira muganga wawe indwara zawe zose n'indi miti ufata.
- Menya neza ingaruka zikomeye zishobora guterwa n’ubwivumbure mu gihe uhabwa urukingo. Niba ugize ibimenyetso nko kugorwa no guhumeka cyangwa kubyimba mu maso, menyesha itsinda ry’abaganga ako kanya.
- Ni ingenzi cyane kuvurwa ku gihe. Ntugasimbuze kuvurwa kubera impamvu iyo ari yo yose. Vugana na muganga wawe niba ufite ikibazo.
- Ntugatinye kubaza muganga wawe ikibazo cyangwa impungenge ushobora kuba ufite.
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