Ese umwana wawe yahindutse mu buryo butunguranye ava ku buzima bwiza? Reka tuvuge kuri leukodystrophy

Ushobora kuba warabonye umwana wari ufite ubuzima bwiza, yiruka hirya no hino akina, agenda ahura n'ingorane zo kugenda cyangwa kuvuga buhoro buhoro, cyangwa imyitwarire ye igenda ihinduka buhoro buhoro. Nk'umubyeyi, ubwo yatangiraga kumererwa neza, hanyuma ukumva ubushobozi bw'umwana we bugenda bugabanuka uko igihe kigenda gihita, biragoye gusobanura ubwoba n'imihangayiko wumva. Impamvu y'ibi ishobora kuba indwara idasanzwe nta n'umwe muri twe wigeze yumva. Uyu munsi turimo kuvuga ku itsinda ry'indwara nk'izo. Iyo ni indwara ya kanseri y'amaraso .

Mu magambo make, leukodystrophy ni iki?

Leukodystrophy si indwara imwe. Ni itsinda ry'indwara zigira ingaruka ku mitsi yacu yo hagati (ni ukuvuga ubwonko n'umugongo). Abaganga bahora bavumbura ibintu bishya kuri yo. Ubu, ubwoko bugera kuri 52 bw'iyi ndwara bwamaze kumenyekana.

Byinshi muri ubwo bwoko bwa leukodystrophies ni indwara iterwa n’uturemangingo . Ni ukuvuga ko ivuka ku babyeyi ikagera ku bana. Hari igihe umwana ashobora kugaragaza ibimenyetso nyuma yo kuvuka. Ariko, hari abana bashobora kuvuka bafite ikibazo cy’uturemangingo dufitanye isano n’iyi ndwara, ariko mu ntangiriro, bashobora kugaragara nk’abazima rwose.

Ni ibihe bimenyetso by'iyi ndwara?

Ubwo bwoko bwose bwa leukodystrophy bufite ikintu kimwe buhuriyeho: bwangiza sheath ya myelin mu bwonko.

Tekereza insinga z'amashanyarazi mu nzu yacu. Hari agakoresho ka pulasitiki gakikije insinga y'umuringa, sibyo? Ibyo ni byo bituma amashanyarazi ajya aho agomba kujya, adatemba. Mu buryo nk'ubwo, imitsi yacu ifite agakoresho k'umweru gafite ibinure kitwa 'myelin' hafi yayo. Aka gakoresho ka myelin gashinzwe gutwara ubutumwa bw'imitsi neza kandi vuba mu bwonko no mu bwonko buva mu bice by'umubiri. Iyo aka gakoresho ka myelin kangiritse, sisitemu yacu y'imitsi ntishobora gukora neza.

Buri bwoko bwa leukodystrophy bwangiza uru rushinge rwa myelin mu buryo butandukanye, bityo ibibazo abana bashobora guhura nabyo bishobora gutandukana cyane.

Urugero, mu bwoko bwitwa indwara ya Canavan , imitsi y'ijosi ry'umwana irahagarara, ariko amaboko n'amaguru bye bigakomeza gukomera. Bashobora kandi gutakaza ubushobozi bwo kubona no kugira ibisebe.

Hari igihe ibimenyetso bigaragara igihe umuntu avuka. Ariko mu bwoko nka Refsum Disease , ibimenyetso bigaragara afite imyaka 20. Hari igihe bishobora kugaragara afite imyaka 50. Ibintu nk'intege nke z'amaso, kubura amatwi no kubura impumuro bishobora kugaragara muri ibi.

Kubera ko ibimenyetso bitandukanye cyane, bishobora kugorana kumenya iyi ndwara.

Kuki ubwoko bw'indwara butera? Ni iyihe mpamvu?

Nkuko twabiganiriyeho mbere, indwara nyinshi muri izi ziba ari indwara zikomoka ku miterere y’umubiri . Ibi bivuze ko ziterwa n’inenge iri mu miterere y’umubiri ikomoka kuri nyina cyangwa se, cyangwa bombi.

Ariko hari ubwoko butaribwa. Buterwa n'impinduka nshya mu ngirabuzimafatizo. Urugero, indwara ya Alexander isa nkaho idakwirakwira. Ibi bivuze ko nubwo nta mubyeyi n'umwe ufite ngirabuzimafatizo ifite inenge, umwana ashobora kuyikuramo.

Kubwibyo, nubwo umwana umwe mu muryango umwe ashobora kuba afite leukodystrophy, abandi bana bashobora kuba batayifite.

Ni gute abaganga basuzuma neza iyi ndwara?

Gusuzuma iyi ndwara ni inzira igoye cyane kuko ibimenyetso biratandukanye cyane. Kubwibyo, abaganga bagomba gukora ubwoko butandukanye bw'ibizamini.

Ese hari uburyo bwo kuvura ibi?

Mu by’ukuri, nta muti uhamye uhari ku bwoko bwinshi bwa leukodystrophy. Ariko, ibi ntibivuze ko nta kintu na kimwe gishobora gukorwa.

Mu gihe cyo kuvura, abaganga bibanda ku kugenzura ibimenyetso no kubungabunga ubuzima bw'umwana uko bishoboka kose. Ubuvuzi buterwa n'ubwoko bwa leukodystrophy umwana afite.

Uburyo busanzwe bwo kuvura ni ubu:

• Gutanga imiti yo kugenzura ibimenyetso (urugero, kurwanya ibicurane).
• Uburyo bwihariye bwo kuvura, nko kuvura umubiri, kuvura indwara z’akazi, no kuvura indwara zo kuvuga , bushobora gufasha umwana kunoza uburyo agenda, ubushobozi bwo gukora imirimo ya buri munsi, no kuvuga.
• Hari abana bashobora gukenera ubufasha bw'inyongera mu myigire no mu mirire .

Mu bihe bimwe na bimwe, gutera umwongo w'amagufwa bishobora kugabanya cyangwa guhagarika iterambere ry'indwara. Abahanga mu bya siyansi barimo gukora ubushakashatsi ku buryo bushya bwo kuvura, nko kuvura uturemangingo .

Muri ibi byose, icy'ingenzi ni ugukomeza kuvugana na muganga wawe no gukurikiza amabwiriza ye.