Uyu munsi tugiye kuvuga ku buvuzi bugoye, ariko bugezweho cyane abantu benshi batarabumva. Izina ryabwo ni Elivaldogene Autotemcel. Bugurishwa ku izina rya SKYSONA. Ubu si ikinini cyangwa capsule isanzwe. Ubu ni uburyo bwihariye bwo kuvura indwara y'imitsi idakunze kugaragara kandi ikomeye yitwa cerebral adrenoleukodystrophy (CALD). Reka dusobanure ubu buryo mu buryo bworoshye ushobora gusobanukirwa.
Ni iki koko kigenda gitya kuri uyu muti?
Kugira ngo tubisobanukirwe, reka dufate urugero ruto. Tekereza ko uturemangingo tw’imitsi mu bwonko bwacu no mu ruti rw’umugongo tumeze nk’insinga z’amashanyarazi. Utu dutsi tw’amashanyarazi dufite agakoresho ka pulasitiki (insulation) kayikikije, gafasha amashanyarazi kugenda neza adatemba. Mu buryo nk’ubwo, uturemangingo tw’imitsi yacu dufite agakoresho kayirinda kitwa 'myelin' kayikikije. Aka gakoresho ni ko gatuma ubutumwa bw’imitsi bugenda vuba kandi neza.
Mu ndwara yitwa cerebral adrenoleukodystrophy (CALD), inenge y’uturemangingo ibuza umubiri gukora poroteyine ikenewe kugira ngo iki gikoresho cyo mu bwonko gikomeze kugumana iki gikoresho cya 'myelin'. Icyo gikoresho cyo kurinda umubiri gihita cyangirika buhoro buhoro, kikabangamira imikorere y’imitsi.
Muri make, ubu buryo bwo kuvura, bwitwa Elivaldogene Autotemcel, bukubiyemo gufata uturemangingo mu mubiri w'umurwayi ubwe, ukaduhindura muri laboratwari, hanyuma ukabiha ubushobozi bwo gukora poroteyine ibura. Uturemangingo twahinduwe twongera gushyirwa mu mubiri w'umurwayi. Ibi kandi byitwa ubuvuzi bw'uturemangingo . Ibi bifasha mu kugenzura ko ibimenyetso birushaho kwiyongera.
Ibintu muganga wawe agomba kumenya mbere yo gutangira ubu buvuzi
Kubera ko ubu buryo bugoye cyane bwo kuvura, ni ngombwa ko itsinda ry’abaganga bawe rimenya neza uko ubuzima bwawe buhagaze. Mbere yo gutangira kuvurwa, ugomba kubibwira muganga wawe niba ufite kimwe muri ibi bibazo:
- Niba ufite ubwoko ubwo aribwo bwose bw'indwara (nk'umuriro, ibicurane, inkorora).
- Niba ufite ubwivumbure kuri uyu muti (elivaldogene autotemcel), indi miti, ibiryo, amarangi, cyangwa imiti irinda ubushyuhe.
- Niba utwite cyangwa ugerageza gutwita .
- Niba wonsa umwana wawe .
Uburyo bwo kuvurwa butangwa bute?
Ubu buryo si umuti wo mu rugo. Ubu buryo butangwa mu bitaro cyangwa ivuriro ryihariye n'itsinda ry'abaganga bahuguwe.
Uyu muti uterwa mu mubiri nk'umunyu unyuze mu mitsi. Igikorwa cyose gikorwa munsi y'ubuyobozi bw'abaganga n'abaforomo.
Mbere yo kuvurwa, uzahabwa agapapuro k'amakuru kihariye kitwa MedGuide . Karimo amakuru menshi y'ingenzi kuri uyu muti, uburyo ukoreshwa n'ingaruka zawo. Ni ngombwa cyane kuwusoma no kuwusobanukirwa witonze.
Ubu buvuzi buhabwa abana barengeje imyaka 4, ariko ingamba zihariye n'ibipimo ngenderwaho biratekerezwaho.
Bite se niba ufashe imiti myinshi?
Kubera ko ibi bikorerwa mu bitaro biyobowe n'abaganga, amahirwe yo kubigeraho ni make cyane. Ariko, niba hari ukeka ko ibi byabaye, Ikigo cy'Igihugu gishinzwe gutanga amakuru ku burozi mu bitaro bya Colombo cyangwa Ishami rishinzwe kuvura byihutirwa (ETU) by'ibitaro bigomba kubimenyeshwa vuba.
Ibintu byo kuzirikana mu gihe cyo kuvurwa na nyuma yo kuvurwa
Nyuma yo guhabwa ubu buvuzi, abaganga bazahora bakurikirana ubuzima bwawe. Kugira ngo ubigereho, uzakenera kwita ku bintu bimwe na bimwe by’umwihariko.
- Amaraso: Nyuma yo kuvurwa, uzakenera gupimwa amaraso yawe ku gihe gisanzwe. Ibi bizareba niba ubuvuzi bukora, niba uturemangingo dushya dukora neza, ndetse niba hari ingaruka mbi zibaho.
- Ingaruka zo kwandura: Ubu buryo bwo kuvura bushobora gutuma ubudahangarwa bw'umubiri wawe bugabanuka by'igihe gito, ibyo bikaba byongera ibyago byo kwandura. Niba ugaragaje ibimenyetso nk'umuriro , inkorora, inkorora, cyangwa kubabara mu muhogo , ntukivure. Hamagara itsinda ry'abaganga ako kanya . Nanone, gerageza kwirinda abantu barwaye uko bishoboka kose.
- Gutanga amaraso: Ntushobora gutanga amaraso nyuma yo guhabwa ubu buvuzi.
- Ingaruka za kanseri: Mu buryo bugezweho bwo kuvura kanseri nk'ubu, hari ibyago bike cyane byo kurwara kanseri y'amaraso. Ntugahangayikishwe n'ibi, ahubwo vuga neza iby'iyi ngaruka n'uko bizakurikiranwa na muganga wawe.
- Inama zihariye ku bagabo: Niba uri umugabo uri muri ubu buvuzi, ugomba gukoresha agakingirizo mu gihe ukorana imibonano mpuzabitsina n'umugore ushobora kubyara. Ubu buryo bwo kwirinda bugomba gukurikizwa mu mezi 6 nyuma yo kuvurwa. Niba ukeka ko uwo mwashakanye atwite muri iki gihe, menyesha muganga wawe vuba.
Ni izihe ngaruka mbi zishobora kubaho?
Kimwe n'indi miti iyo ari yo yose, ubu buryo bwo kuvura bushobora gutera ingaruka mbi. Zimwe muri zo zikenera ubuvuzi bwihuse, izindi zishobora kuba zisanzwe.
| Ingaruka mbi | Ibisobanuro / Ibimenyetso |
|---|---|
| Ingaruka mbi zikomeye zigomba kumenyeshwa muganga ako kanya | |
| Ubushobozi bwo kugira ubwivumbure | Uruhu rushyushye, kuribwa, kubyimba mu maso, ku minwa, ku rurimi cyangwa mu muhogo. |
| Kuva amaraso | Amaraso mu mwanda cyangwa mu mwanda w’umukara, kuruka bisa n’ikawa, inkari zitukura cyangwa umukara wijimye, utudomo duto dutukura/umuhengeri ku ruhu, n’udusebe duke. |
| Kwandura | Umuriro, inkorora, inkorora, kubabara mu muhogo. |
| Ibimenyetso by'igicuri (Indwara zo mu mutwe) | Kugira indwara isa n'iy'igicuri ( igicuri ). |
| Ingaruka mbi ubusanzwe zitari mbi, ariko zigomba kumenyeshwa muganga mu gihe zikomeje | |
| Ibibazo by'igogora | Kurya impatwe, kubabara mu gifu, impiswi, kuruka, isesemi. |
| Izindi ndwara ntoya | Kubura ubushake bwo kurya, kuribwa umutwe, kubabara mu kanwa cyangwa mu muhogo ndetse no kubabara. |
Uru rutonde ntirugaragaza ingaruka zose zishobora kubaho. Byongeye kandi, niba ubonye ibimenyetso bidasanzwe, vugana na muganga wawe ku byerekeye ibyo.
Ubutumwa bwo kujyana mu rugo
- Elivaldogene Autotemcel (SKYSONA) ni uburyo bwihariye bwo kuvura indwara idakunze kugaragara ya Cerebral Adrenoleukodystrophy (CALD).
- Ubu buvuzi butangwa mu bitaro buyobowe n'itsinda ry'abaganga b'inzobere.
- Mbere yo kuvurwa, menya neza ko wabwiye muganga wawe amakuru yose y’ubuzima bwawe (cyane cyane indwara zandurira mu biyobyabwenge, aleriji).
- Witondere cyane ibimenyetso nko kwandura no kuva amaraso nyuma yo kuvurwa. Niba ufite gushidikanya, menyesha muganga wawe vuba.
- Abagabo bavurwa basabwa gukoresha agakingirizo mu gihe cy'imibonano mpuzabitsina mu gihe cyose cy'ubuvuzi.
- Ntutinye kuvugana na muganga wawe ku bibazo cyangwa impungenge ushobora kuba ufite.
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