Nk'umubyeyi cyangwa se, icyizere cyawe gikomeye ni ukubyara umwana muzima. Ariko rimwe na rimwe, bitewe n'ibintu twumva kandi tubona, cyane cyane iyo twumvise indwara zidasanzwe zigira ingaruka ku bana, twumva dufite ubwoba bwinshi. Ariko icy'ingenzi kuruta gutinya ni ukumenya neza kandi byoroshye ibyo bintu. Uyu munsi, tugiye kuvuga ku ndwara imwe nk'iyi idakunze kugaragara, ariko ikwiye kumenyekana nk'ababyeyi . Iyo ni Lissencephaly.
Mu magambo make, Lissencephaly ni iki?
Lissencephaly ni indwara idakunze kubaho mu gihe cyo gutwita , iyo umwana arimo gukura mu nda, ubwonko bw'umwana bukura. Ubusanzwe, uko ubwonko bw'umwana muzima bukura, bukuramo iminkanyari myinshi. Tekereza nko gushyira urupapuro runini mu gasanduku gato. Iyi minkanyari ni yo ituma ubwonko bukora akazi kabwo gakomeye neza.
Ariko ku bijyanye na Lissencephaly, iyi minkanyari ntikora neza hagati y'ibyumweru bya 9 na 12 byo gutwita. Kubera iyo mpamvu, ubuso bw'ubwonko bukunze kugaragara neza . Ijambo "Lissencephaly" risobanura "ubwonko bworoshye."
Iyi ndwara ntigira ingaruka ku bana bose kimwe. Nubwo bamwe mu bana bakura ku rugero rusanzwe, abandi bashobora kudakura barenze urugero rw'umwana w'amezi 5. Nubwo nta muti uhari kuri iyi ndwara, kwita ku mwana ku buryo bwo kumushyigikira bishobora gufasha mu kugenzura ibimenyetso no koroshya ubuzima. Nubwo iyi ndwara ishobora gushyira ubuzima mu kaga ku bana bamwe, bamwe bakomeza kubaho kugeza bakuze.
Ese hari ubwoko butandukanye bw'iyi ndwara?
Yego, ibi bishobora kugaragara mu buryo bubiri bw'ingenzi.
1. Indwara ya Lissencephaly: Aha, umwana afite Lissencephaly gusa. Nta sano ifitanye n'indi ndwara iyo ari yo yose.
2. Bifitanye isano n'izindi ndwara: Hari igihe ibi bishobora kubaho nk'igice cy'indi ndwara y'uruhererekane rw'uturemangingo.
Reka turebe zimwe mu ndwara z'ingenzi zigaragara mu mbonerahamwe iri hepfo.
| Izina ry'indwara | Ibintu bisanzwe bishobora kugaragara |
|---|---|
| Indwara ya Miller-Dieker | Agahanga kanini, agakanu gato, n'izindi mpinduka mu maso. Gukura buhoro no guhumeka biragoye. |
| Indwara ya Norman-Roberts | Kutareba kure, gucika intege, no kutabona neza mu mutwe. |
| Indwara ya Walker-Warburg | Intege nke zikomeye z'imitsi no gutakaza imbaraga. |
Ni izihe mpamvu zitera lissencephaly?
Iyi ni indwara idasanzwe cyane, ibaho ku mwana umwe mu bana 100.000 bavutse.
Abashakashatsi basanze impamvu nyamukuru ibi ari inenge iri mu turemangingo duke . Ariko icy'ingenzi ni uko inyinshi muri izi nenge zikomoka ku turemangingo zituruka ku babyeyi ntiziragwa n'abana . Ibi bivuze ko nta muntu n'umwe mu muryango ushobora kuba yararwaye iyi ndwara mbere. Izi zishobora kuba impinduka zibaho mu buryo butunguranye mu miterere y'uturemangingo tw'umwana.
Hari igihe abana bafite iyi ndwara baba badafite na rimwe muri za gene zagaragajwe kugeza ubu. Ibi bivuze ko iyi ndwara ishobora guterwa n'izindi mpamvu za gene abashakashatsi bataramenya, cyangwa izindi mpamvu zitazwi.
Byongeye kandi, ubushakashatsi bumwe na bumwe bwerekana ko:
- Indwara zimwe na zimwe zigaragara ku mubyeyi utwite (indwara zo mu nda).
- Umwana uri mu nda afite ikibazo cyo gucika kw'imitsi .
Ibintu nk'ibyo nabyo bishobora kuba ari byo bitera ibi.
Ni ibihe bimenyetso by'iyi ndwara bishobora kuba?
Ubukana n'ibimenyetso bya lissencephaly biratandukanye cyane bitewe n'umwana.
Bitewe n'uko ubwonko budafite ubushobozi bwo gukura neza, ikimenyetso cy'ingenzi gishobora kugaragara mu gihe cyo kuvuka cyangwa nyuma gato ni umutwe muto udasanzwe (microcephaly) .
Izindi ngingo zirimo:
- Kugorwa no kumira
- Kubabara kw'imitsi
- Ibibazo bikomeye byo mu mutwe no ku mubiri ndetse n'ubutinda bw'iterambere.
Hari abana bashobora kutazigera babasha kwicara, guhagarara, kugenda cyangwa kwizunguruka. Imitsi yabo ishobora gucika intege. Bashobora kandi kugira amaboko, intoki cyangwa amano byangiritse.
Ariko, hari urundi ruhande rubigaragaza. Hari aho abana bamwe bakura neza kandi bakagaragaza ubumuga buke cyane mu myigire. Kubwibyo, si byiza gutekereza ko abana bose ari bamwe.
Ibintu ukeneye kumenya ku byerekeye indwara zo mu mutwe (epilepsy)
Abana bagera kuri 8 kuri 10 bafite iyi ndwara bagira ubwoko bwihariye bwo gucika intege bwitwa infantile spasms . Iyi ni indwara iteje akaga cyane.
Iyo ibi bibayeho , ntabwo bisa n'aho ari binini, bishyuha nk'uko dusanzwe tubitekereza. Ahubwo, umwana ashobora kuba arimo kwiheba gusa, ahindagurika nk'aho ari kuribwa mu nda, cyangwa ndetse agasa n'ufite ubwoba . Bamwe mu babyeyi bashobora kwibeshya ko ibi ari colic cyangwa reflux.
Icy'ingenzi ni uko uku gukomereka kw'abana ari gukomeye kuruta uko umuntu asanzwe abigenza. Bishobora kwangiza ubwonko no kudindiza imikurire y'umwana. Bityo rero, niba ubonye ibimenyetso nk'ibyo , ni ngombwa kwihutira gushaka inama kwa muganga.
Byongeye kandi, abana bagera kuri 9 kuri 10 barwaye lissencephaly bashobora kurwara igicuri , indwara irangwa no gupfukama igihe kirekire, mu mwaka wa mbere w'ubuzima bwabo.
Ni gute wasuzuma iyi ndwara?
Abaganga bakoresha cyane cyane isuzuma ry'ubwonko kugira ngo bamenye iyi ndwara.
- gupima CT (CT scan)
- Gupima MRI
Izi scan zigaragaza neza imiterere y'ubwonko.
Iyo ibimenyetso byemejwe, hari igihe ibizamini by’uturemangingo bikorerwa kugira ngo hamenyekane ikibazo cyabyo.
Uburyo bwo kuvura no gucunga bumeze bute?
Nkuko twabivuze mbere, nta muti uhari kuri iyi ndwara. Ariko ushobora kugenzura ibimenyetso by'umwana wawe, ukoroshya ubuzima bwa buri munsi uko bishoboka kose, kandi ugaha umwana wawe ubuzima bwiza. Abaganga n'ababyeyi bakorana kugira ngo bibanda kuri ibi bintu.
- Ubuvuzi bw'umubiri, ubuvuzi bw'akazi, n'ubuvuzi bwo kuvuga: Ibi bifasha gukomeza imitsi y'umwana, kumutoza gukora imirimo ya buri munsi, no guteza imbere ubuhanga mu itumanaho.
- Imiti yo kugenzura uko umubiri umera:Niba umwana afite ikibazo cyo kurwara indwara yo mu mutwe, ni ngombwa gukomeza gutanga imiti yanditswe na muganga kugira ngo ayigenzure.
- Ibikoresho byo gufasha: Umwana ashobora gukoresha intebe z'abamugaye cyangwa intebe zidasanzwe zimufasha kwicara ahagaze.
- Kugaburira: Abana bafite ikibazo cyo kumira bashobora gukenera gushyirwamo umuyoboro w'amafunguro unyuze mu mazuru cyangwa mu nda kugira ngo bajyane ibiryo mu nda.
Kugorwa no guhumeka no kumira, ndetse no kurwara indwara idakira, ni byo bibazo bikomeye bishobora gushyira ubuzima bw'abana bafite iyi ndwara mu kaga.
Ariko nk'umubyeyi, ikintu cy'ingenzi ugomba kwibuka ni uko buri mwana atandukanye . Nubwo hari abana batagera ku myaka 10, abandi bakura neza bakaba bakuru. Kubwibyo, ni ngombwa cyane kubonana n'inzobere kugira ngo umenye byinshi ku buzima bw'umwana wawe ndetse n'ubufasha buhari.
Ubutumwa bwo kujyana mu rugo
- Lissencephaly ni indwara idakunze kubaho iyo ubwonko bw'umwana budakora neza mu gihe atwite.
- Ibimenyetso biratandukanye cyane bitewe n'umwana. Nubwo bimwe bishobora kugira ingaruka nke, ibindi bishobora kugira ibibazo bikomeye by'umubiri n'ibyo mu mutwe.
- Witondere cyane cyane imitsi y'uruhinja , ubwoko bw'indwara aho umwana asa n'ufite ubwoba gusa. Nubibona, hita ugana kwa muganga.
- Nubwo nta muti wihariye uhari, ubuvuzi bw'umubiri, imiti, n'ubundi buvuzi bufasha umwana kugira ubuzima bwiza.
- Urugendo rw'umwana wese ruratandukanye, bityo ni ngombwa gushaka ubuyobozi bw'umuganga w'abana kugira ngo aguhe inama nyayo ku mwana wawe, aho kumugereranya n'abandi.
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