Hari umuntu wo mu muryango wawe cyangwa umuntu uzi ufite SMA, cyangwa Spinal Muscular Atrophy ? Ushobora kuba wibaza, ndetse wenda ukaba wanatinya, uburyo ibi bizahinduka uko igihe kigenda gihita, n'uko ibimenyetso bizagenda byiyongera. Mu by'ukuri, uburyo iyi ndwara ikura buratandukanye cyane bitewe n'umuntu ku wundi. Biterwa n'ubwoko bune bwa SMA ufite, igihe ibimenyetso byatangiriye, n'urwego rw'imikurire y'umubiri wari ugezemo icyo gihe. Reka tubiganireho mu buryo bworoshye kandi busobanutse uyu munsi.
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Indwara ya SMA itera imbere ite?
Iyi ndwara yibasira cyane cyane imitsi yo hagati mu mubiri, nko mu mugongo no mu kibuno. Ibi bigaragara cyane kurusha imitsi iri kure y’umubiri rwagati (nk’intoki n’amano).
Tekereza muri ubu buryo, imitsi yo mu bibero byawe, igufasha guhagarara, irushaho kuba intege nke kurusha imitsi yo mu birenge byawe. Nanone, intege nke mu birenge byawe zirushaho kugaragara imbere y'amaboko yawe.
Hari abantu bashobora no gutakaza imbaraga buhoro buhoro mu maboko yabo. Ariko, akenshi amaboko ni yo agumana imbaraga nyinshi uko igihe kigenda gihita. Nubwo amaboko yaba afite intege nke, ashobora gukomeza gukora imirimo ya buri munsi , nko gukoresha mudasobwa.
Ikindi kibazo gikomeye kijyana na SMA ni umugongo ugoramye , mu buvuzi twita scoliosis . Abana benshi bafite SMA barwara iyi ndwara bakiri bato. Ibi biterwa nuko imitsi ishyigikira umugongo igenda icika intege buhoro buhoro.
Kubera ko scoliosis ishobora gutera ibibazo byo guhumeka, ni ngombwa cyane kuganira na muganga wawe kuri ibi buri gihe no gukurikiza amabwiriza akenewe.
Umuntu urwaye scoliosis ashobora kugira ibimenyetso bikurikira:
- Amatugu n'ikibuno ntibiri ku rwego rumwe.
- Urutugu rumwe ni runini cyangwa rugaragara imbere kurusha urundi.
- Ikibuno kimwe kiri hejuru kurusha ikindi.
Uku kugorama k'umugongo bishobora gutera ububabare no kubabara. Iyo kugorama gukomeye, bishobora gukanda ibihaha no kugira ingaruka ku guhumeka. Abaganga bakunze kugerageza gucunga ikibazo bakoresheje icyuma cyihariye cyo gukingira umwana nta kubagwa kugeza igihe umwana akuze neza. Ariko, kubera ko kugorama k'umugongo gushobora kwiyongera uko igihe kigenda gihita, muganga wawe azitondera cyane ibibazo byose byo guhumeka cyangwa kugenda bibaho muri urwo rwego.
Ibikurikiraho biterwa n'ubwoko bwa SMA ufite.
Ubwoko bwa SMA n'imiterere yazo
SMA igabanyijemo ubwoko bune bw'ingenzi. Ubu bwoko bushyirwa mu byiciro hashingiwe ku myaka ibimenyetso bitangiraho ndetse n'igihe umurwayi akora cyane. Reka turebe buri bwoko ukwabwo.
| Ubwoko bwa SMA | Imyaka yo gutangira ibimenyetso | Ibintu by'ingenzi n'ibigiye kubaho mu gihe kiri imbere |
|---|---|---|
| Ubwoko bwa 1 (Indwara ya Werdnig-Hoffmann) | Igihe cy'ivuka cyangwa mbere y'amezi 6 | Birakomeye cyane. Iyo umuntu atavuwe, biragoye kwicara cyangwa kugenzura umutwe we. Biragoye konka amata cyangwa kumira ibiryo. Bisa nkaho umuntu arimo guhumeka mu nda. Indwara zikomeye zo mu myanya y'ubuhumekero zishobora kubaho kenshi. |
| Ubwoko bwa 2 | Hagati y'amezi 6 na 18 | Bashobora kwicara, ariko ntibashobora kugenda batabifashijwemo. Uko bagenda bakura, bashobora gukenera ubufasha no kwicara. Gutitira bishobora kugaragara. |
| Ubwoko bwa 3 (Indwara ya Kugelberg-Welander) | Nyuma y'amezi 18 cyangwa akiri muto | Nshobora kugenda. Ariko uko igihe kigenda gihita, nkunda kugwa, birangora kuzamuka no kumanuka ingazi. Biragoye kongera guhaguruka nyuma yo kuryama hasi. |
| Ubwoko bwa 4 | Mu myaka yabo ya 20-30 (ubukure) | Gake cyane. Ibimenyetso bikura buhoro cyane. Abantu bakuru bashobora kugenda, ariko intege nke z'imitsi zibaho uko bakura. |
Birenzeho gato ku bwoko bwa 1
Iyi ni yo ndwara ikomeye cyane ya SMA. Yitwa kandi indwara ya Werdnig-Hoffmann . Irasuzumwa akivuka cyangwa mu mezi 6 ya mbere. Intege nke z'imitsi zigenda ziyongera vuba cyane. Iyo umwana atavuwe, ntazashobora kwicara cyangwa guhagarara.
Umwana ashobora kubura imirire myiza bitewe no kugorwa no konka no kumira. Hari abana bashobora gusa n'aho bahumeka mu nda . Ibi biterwa nuko imitsi yo mu gituza idakora neza, bityo bagahumeka bakoresheje diaphragm gusa. Ibi bishobora gutera ibibazo bikomeye byo guhumeka ndetse n'indwara zandura kenshi, rimwe na rimwe zigashyira ubuzima mu kaga.
Birenzeho gato ku bwoko bwa 2
Ubu bwoko bw'indwara bufatwa hagati y'amezi 6 na 18. Umuvuduko w'indwara ugenda uhinduka cyane bitewe n'umwana umwe. Abana barwaye indwara ya 2 bashobora kwicara badafashijwe mu ntangiriro. Ariko, mu gihe bazaba bageze mu gihe cy'ubwangavu, bishobora kugorana kwicara badafashijwe.
Nanone, aba bana ntibashobora kugenda intambwe zirenze nke batabifashijwemo. Akenshi, intoki zabo zitangira kujugumira (gutitira). Ndetse n'imitsi ishobora gucika iyo muganga akoze ku ivi akoresheje inyundo nto.
Birenzeho gato ku bwoko bwa 3
Iyi ndwara yitwa kandi Kugelberg-Welander syndrome . Ubusanzwe ifatwa umuntu afite amezi 18, ariko hari igihe ibimenyetso bishobora gutangirira mu bwana.
Uburyo ubu bwoko bwa SMA butera imbere biterwa n'uburyo umwana yiga. Aba bana bashobora kwiga kugenda. Ariko uko igihe kigenda, batangira kugwa kenshi, kugorana kuzamuka ingazi, no kugorwa no guhaguruka baryamye. Kimwe n'ubundi bwoko bwa SMA, barushaho kwibasirwa n'indwara zo mu myanya y'ubuhumekero uko imitsi yabo igabanuka.
Birenzeho gato ku bwoko bwa 4
Ubu ni bwo bwoko bwa SMA bukunze kugaragara cyane. Buboneka ku bantu bari hagati y’imyaka 20 na 30. Iyi ndwara igenda buhoro cyane. Abantu bafite ubwo bwoko bashobora kugenda bamaze gukura, ariko intege nke z’imitsi zishobora kwiyongera buhoro buhoro uko bagenda bakura.
Ubutumwa bwo kujyana mu rugo
- Kunanirwa kw'imitsi yo mu mugongo (SMA) ni indwara igabanya intege z'imitsi uko igihe kigenda gihita. Ariko, ntabwo igira ingaruka ku bwonko. Ubwenge bw'umurwayi n'ibyumviro bye bikomeza kuba ibisanzwe.
- Ubwoko bwa SMA wowe cyangwa umwana wawe mufite bugena uburyo indwara izaba yihuta kandi ikomeye.
- Ibibazo byo guhumeka no gucika intege kw'imitsi ni indwara zikunze kugaragara zifitanye isano na SMA. Ibi bisaba kwitabwaho by'umwihariko no gukorerwa igenzura na muganga.
- Ni ngombwa cyane gukorana bya hafi na muganga wawe kugira ngo urware indwara, witabire amavuriro ku gihe, kandi ukurikize amabwiriza atanzwe.
- Uburyo bwo kuvura bugezweho bwazamuye cyane ubuzima n'ubuzima bw'abarwayi ba SMA, bityo ntugacike intege.
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