Ese uzi indwara ya Spinal Muscular Atrophy (SMA)?

Ese wigeze wumva umwana wawe afite intege nke gato ugereranyije n'abandi bana, cyangwa ko afite ikibazo cyo gufata ijosi rye rigororotse? Cyangwa se umwana wawe mukuru ahora agwa cyangwa agira ikibazo cyo kuzamuka ingazi? Ushobora gutekereza ko ibi ari ibintu bisanzwe hanyuma ukabyirengagiza, ariko uyu munsi tugiye kuvuga ku mpamvu ikomeye ishobora rimwe na rimwe kuba iri inyuma yabyo. Iyo ni Spinal Muscular Atrophy , cyangwa SMA nk'uko abaganga babyita.

None se iyi SMA ni iki?

Mu magambo make, iyi ni indwara iterwa n'uturemangingo. Kugira ngo imitsi yo mu mubiri wacu ikore neza, ubutumwa bugomba kuva mu bwonko bukagera kuri iyo mitsi. Ubu butumwa butwarwa n'uturemangingo twihariye tw'imitsi (neurons) mu ruti rw'umugongo rwacu. Mu by'ukuri, utu turemangingo tw'imitsi ni two dutegeka imitsi "gufatana" no "kwaguka."

Muri SMA, ubusembwa bw’uturemangingo butuma utwo turemangingo tw’imitsi ducika intege buhoro buhoro kandi tugapfa. Tekereza nk'insinga ijyana amashanyarazi ku gikoresho cy'amashanyarazi ikagenda yangirika buhoro buhoro, ikagabanya ingano y'amashanyarazi ishobora gutwara. Mu buryo nk'ubwo, uko utwo turemangingo tw’imitsi ducika intege, ubutumwa bwohereza ku mitsi na bwo buragabanuka. Kubera iyo mpamvu, imitsi igenda igabanuka buhoro buhoro ikabura imbaraga bitewe no kutagira icyo ikoresha. Ibi ni byo twita gucika intege kw'imitsi.

Ni ubuhe bwoko bw'ingenzi bwa SMA?

SMA ntigira ingaruka kuri buri wese kimwe. Igabanyijemo ubwoko bwinshi bw'ingenzi hashingiwe ku myaka ibimenyetso bitangiraho n'uburemere bw'indwara. Intambwe umwana ageraho mu mikurire ye - nko gufata ijosi rye, kwicara no kugenda - ni ingenzi cyane muri uru rwego.

Kugira ngo byoroshye kubisobanukirwa, reka turebe ubwo bwoko mu mbonerahamwe.

Noneho reka tuvuge kuri buri bwoko muri ubu buryo mu buryo burambuye.

SMA type 1 (indwara ya Werdnig-Hoffmann)

Ubu ni bwo bwoko bukunze kugaragara cyane kandi bukabije. Aba bana bagaragaza ibimenyetso mbere y'amezi 6. Kenshi na kenshi, ibimenyetso bitangira kugaragara hakiri kare nk'amezi 3. Iki ni ikintu kibabaza cyane umubyeyi na se. Umwana yumva nta buzima afite. Nk'igipupe cy'imyenda. Ijosi ntirishobora gufatwa rigororotse. Amaguru n'amaguru biranamira. Kubera ko bigoye kunywa amata ndetse no kumira ibiryo, hashobora kubaho ibura ry'indyo. Nanone, imitsi ifasha mu guhumeka iragabanuka, bityo ibyago byo kwandura indwara z'ubuhumekero ni byinshi. Ikibabaje ni uko benshi muri abo bana badashobora kubaho imyaka 2.

SMA ubwoko bwa 2 (indwara ya Dubowitz)

Ubu ni ubwoko bw'ubukana buri hagati. Tekereza, umwana wawe yicaye neza kandi akina, ariko ntagerageze guhaguruka cyangwa kugenda mu mezi 6-7. Ubu ni ubwoko bwa kabiri bw'indwara. Ibimenyetso akenshi bitangira mbere yuko umwana ahaguruka ngo yigendere wenyine. Aba bana bashobora kuba bafite imbaraga nke mu maboko yabo kurusha amaguru. Ariko ntibashobora guhaguruka ngo bigendere bonyine. Uko bagenda bakura, wenda mu gihe cy'ubwangavu, bashobora gukenera ubufasha bwo kwicara. Bashobora kandi kugira ikibazo cyo guhumeka mu gihe basinziriye, bityo ibi nabyo bigomba kwitabwaho. Bitewe n'ubukana bw'ibimenyetso, igihe cyo kubaho gishobora kuba gito ugereranyije n'ibisanzwe.

Ubwoko bwa SMA 3 (Kugelberg-Welander syndrome)

Ubu ni ubwoko bworoheje. Ibimenyetso by'ubu bwoko bigaragara kuva ku mwaka 1 1/2 (amezi 18) kugeza ku bwangavu. Aba bana bashobora kugenda no guhagarara bonyine. Ariko, ikibazo ni uko bagwa kenshi, bagorwa no kwiruka no gusimbuka, kandi bikabagora cyane guhaguruka ku ntebe cyangwa kuzamuka ingazi. Uko imitsi igenda igabanuka uko igihe kigenda, bashobora gukenera ubufasha bw'igare ry'abamugaye mu gihe kizaza. Ariko inkuru nziza ni uko aba bana bashobora kubaho ubuzima busanzwe.

SMA ubwoko bwa 4 (SMA y'abantu bakuru)

Ubu bwoko ni buke cyane. Ibimenyetso bitangira umuntu akuze, akenshi mu myaka ya za 20 cyangwa 30. Ushobora kugira intege nke mu maboko no mu maguru, rimwe na rimwe ukumva udafite umwuka mwiza. Ibi bimenyetso bigenda buhoro buhoro ku buryo bamwe batazi ko bafite iyi ndwara imyaka myinshi. Ntabwo bigira ingaruka ku mibereho y'umuntu.

Wakora iki niba ubonye ibimenyetso nk'ibi?

Niba ukeka ko umwana wawe afite kimwe mu bimenyetso bivugwa muri iyi nkuru, ntugatinye kandi uhite ugana muganga wujuje ibisabwa, cyane cyane umuganga w'abana. Ntugerageze kwisuzuma ukoresheje interineti cyangwa amakuru y'ibihuha. Ibi bishobora guteza akaga. Umuganga azasuzuma umwana wawe, nibiba ngombwa, akwohereze ibizamini bya genetiki kugira ngo yemeze neza imiterere y'indwara. Iyo indwara yemejwe, uzamenyeshwa ubwoko bwihariye bw'ubuvuzi, ubuvuzi bwa physiotherapy, n'uburyo bushya bwo kuvura.