Ese umwana wawe arwaye ibicurane mu buryo butunguranye? Reka twige ibijyanye na Cortical Dysplasia!

Ese umwana wawe ahita arwara igicuri? Cyangwa hari umuntu uzi ufite ibimenyetso nk'ibi by'igicuri? Hari igihe dutinya cyane iyo tubonye ibi bintu, si byo se? Impamvu imwe ishobora kuba indwara y'ubwonko ushobora kuba utari warigeze wumva. Uyu munsi tugiye kuvuga kuri imwe muri izo ndwara, ari yo Cortical Dysplasia . Nubwo izina rishobora kumvikana nk'irigoye, reka tubisobanure.

Dysplasia y'umutima (cortical dysplasia) ni iki?

Muri make, indwara ya cortical dysplasia ni indwara idakunze kugaragara ishobora gutera indwara zo mu mutwe . Hari igihe abaganga bayita focal cortical dysplasia, cyangwa (FCD). Ivugwa "co-ticle" na "dys-pla-sia."

Iyi ndwara igira ingaruka ku gice cy'ubwonko . Ni ukuvuga igice cy'inyuma cy'ubwonko bwacu. Tekereza, iyi cortex y'ubwonko igenzura ibintu byinshi by'ingenzi nko kugenda k'umubiri wacu, ibitekerezo byacu, imvugo, kwibuka, ubwenge, n'imico yacu. Ni nk'aho mudasobwa yacu ikoresha CPU.

Ijambo "dysplasia" mu buvuzi risobanura gukura kudasanzwe kw'uturemangingo mu mubiri. Rero, ku muntu ufite dysplasia y'umutima, uturemangingo two mu bwonko, cyangwa uturemangingo tw'ubwonko, ntidukura neza. Ibi bibaho umwana akiri mu nda .

Ni ubuhe bwoko bw'ingenzi bwa dysplasia ya cortical?

Abaganga bagabanya iyi ndwara, yitwa cortical dysplasia, mu moko atatu y'ingenzi, bitewe n'ibice bya cortex yo mu bwonko (lobes) byagizweho ingaruka, cyangwa uburyo uturemangingo tudasanzwe tubaho mu bwonko.

Ubwoko bwa 1

Muri ubu bwoko, uturemangingo tudasanzwe tuba twaravutse muri cortex yawe, cyangwa uturemangingo tw’ubwonko tudatunganyije uko bikwiye. Ibi bishobora kugira ingaruka ku gice icyo ari cyo cyose cy’ubwonko. Ariko bikunze kugaragara mu gice cy’ubwonko , ari cyo gice cy’ubwonko kirerekeza ku matwi, cyangwa igice cy’imbere , ari cyo gice kirerekeza ku gahanga.

Ubwoko bwa 2

Muri ubu bwoko, uturemangingo two muri cortex y'ubwonko tuba tunini kurusha uko bisanzwe, cyangwa dufite isura itandukanye. Ubu bwoko bwa kabiri buragoye kandi bukomeye kurusha ubwa mbere. Bukunze kandi kugira ingaruka ku bice by'imbere n'iby'inyuma.

Ubwoko bwa 3

Ubu bwoko bubaho iyo ufite indwara ya cortical dysplasia yo mu bwoko bwa 1 cyangwa 2 hamwe n'ibindi bibazo mu bwonko. Urugero, bishobora kubaho ku tumori two mu bwonko, imitsi isanzwe y'amaraso, cyangwa ibisebe byo mu bwonko. Igice cy'ubwonko cyafashwe giterwa n'aho ikibyimba giherereye cyangwa agace k'ubwonko kangiritse.

Ibimenyetso ni ibihe? Ubimenya ute ?

Mu ndwara ya "cortical dysplasia"Ikimenyetso nyamukuru kandi gikunze kugaragara ni ibicurane. Iki nicyo twita kandi gucika intege. Iyi ndwara y'igicuri ishobora kuza mu buryo butandukanye:

• Ibisebe byo mu bwonko: Ibi bitangirira ku ruhande rumwe rw'ubwonko. Ntabwo bikwirakwira ku rundi ruhande. Ushobora guhura n'ibintu nko kunyeganyega no kunyeganyega muri iki gihe. Ariko si buri wese ubyumva. Ushobora kumva udasanzwe cyangwa utandukanye n'abandi.
• Gufatwa n'indwara ya Tonic-clonic (Grand Mal): Ubu bwoko bw'indwara y'ihungabana bugira ingaruka ku mpande zombi z'ubwonko. Iki ni igihe umubiri uhuha kandi ukanyeganyega mu buryo butunguranye. Bigira ingaruka ku mpande zombi z'umubiri.
• Kubabara kw'abana: Ubu ni ubwoko bwihariye bw'indwara yo gukubita itoto bugaragara gusa ku bana bari munsi y'umwaka umwe . Muri ibi, umwana ahita arambuye amaboko, amaguru, n'ijosi, hanyuma akongera kubisubiza inyuma vuba. Ni nk'aho arimo kugira indwara yo gukubita itoto. Ibi bishobora kubaho inshuro nyinshi ku munsi.

Igikuru ni uko izi ndwara z'igicuri zishobora gutangira igihe icyo ari cyo cyose mu buzima. Hari abantu batangira kuzigira bakiri bato, mu bwana bwabo. Ariko hari n'abantu bashobora kugira indwara y'igicuri bwa mbere mu buzima bwabo.

Uretse indwara y'igicuri, ushobora no kugira ibindi bimenyetso:

• Kugorwa no gushyira ibitekerezo hamwe, kudashobora kugumana ubwenge ahantu hamwe .
• Kugorwa no kwiga ibintu bishya n'ibitekerezo bishya.
• Intege nke z'imitsi ku ruhande rumwe rw'umubiri (hemiparesis).

Cortical dysplasia ishobora no kugira ingaruka ku miterere y'ubwonko. Ariko umuganga ashobora kubona izi mpinduka gusa akoresheje MRI scan, ari na bwo buryo bwonyine bwo kumenya neza impinduka ziri mu gice cy'ubwonko (cortex).

Kuki iki kibazo kibaho? Impamvu ni iyihe?

Cortical dysplasia ni indwara iterwa n’imiterere y’uturemangingo . Ibi bivuze ko bitewe n’impinduka mu miterere y’uturemangingo, ubwonko ntibukura neza mu gihe cy’uruhinja, ni ukuvuga igihe umwana arimo gukura mu nda.

Ariko abashakashatsi ntibarabasha kuvuga neza icyo impinduka mu ngirabuzimafatizo zitera. Baracyakora ubushakashatsi ku mpamvu zishobora gutera ibi.

Impuguke zimwe zizera ko indwara ya cortical dysplasia yo mu bwoko bwa 2 iterwa n’impinduka mu ngirabuzimafatizo yitwa inzira ya MTOR . Izi ngirabuzimafatizo zigira poroteyine ifasha uturemangingo twacu, cyane cyane uturemangingo tw’ubwonko, gukura no gutera imbere. Rero iyo habayeho impinduka mu ngirabuzimafatizo ya MTOR, ishobora gutuma ubwoko butari bwo bw’uturemangingo bukura.

Abaganga bapima iki kibazo gute? (Isuzuma)

Umuganga asuzuma indwara ya cortical dysplasia binyuze mu bipimo byihariye byo gufata amashusho .

Ugomba kubwira muganga wawe ibimenyetso byawe n'igihe wabibonye bwa mbere. Niba bishoboka, ni ngombwa gutanga ibisobanuro birambuye ku bihe byawe byo gukubita (urugero uko byatangiye, igihe byamaze, uko byari bimeze icyo gihe, nibindi) kuko ibi bisobanuro bishobora kugufasha gusuzuma indwara.Muganga ashobora kumenya ubwoko bw'iyi ndwara.

Hanyuma muganga azafata amafoto y'ubwonko bwawe kugira ngo arebe niba hari uturemangingo twifashe nabi cyangwa tutameze neza muri cortex y'ubwonko. Ibizamini bashobora gukoresha kuri ibi ni ibi bikurikira:

• `MRI (Ishusho ya Magnetic Resonance):` Ibi bishobora gufata amashusho asobanutse neza y'ubwonko.
• `EEG (Electroencephalogram)`: Ibi bipima imikorere y'amashanyarazi y'ubwonko. Ibi bifasha kubona inkomoko y'igicuri.
• `MEG (Magnetoencephalography):` Iki ni ikizamini kireba imikorere y'ubwonko, kimwe na `EEG.`
• "Isuzuma rya PET (Isuzuma rya Positron Emission Tomography)"
• `SPECT scan (Gupima inshuro imwe ya photon emission computed tomographie)`

Ibi bizamini byose bireba ibirimo kuba mu bwonko.

Ni ubuhe buryo bwo kuvura buhari?

Muganga wawe azagusaba uburyo bwo kuvura kugira ngo ugenzure ibimenyetso byawe kandi ugabanye inshuro nyinshi zo gucika intege.

Akenshi bazatangirana n'imiti igabanya ubukana bw'indwara . Ariko dore ikibazo. Cortical dysplasia rimwe na rimwe ishobora gutera igicuri kidakira imiti. Ibyo bivuze ko bishobora kugorana kugikemura ukoresheje imiti kuruta igicuri gisanzwe. Nubwo imiti ishobora gukora mu ntangiriro, ishobora kugabanuka uko igihe kigenda gihita.

Gukurikiza indyo ya ketogenic (cyangwa indyo ya keto) bishobora kugabanya inshuro nyinshi indwara zo mu mutwe ziterwa n'igicuri. Ibi bikubiyemo kurya indyo irimo ibinure byinshi n'ibinure bike. Ibi bihindura uburyo ubwonko bubona imbaraga. Ushobora kandi gusaba ubufasha bw'inzobere mu mirire kugira ngo agufashe guhindura uburyo bwo kurya.

Niba ubundi buryo bwo kuvura budashoboye kugenzura igicuri cyawe neza, ushobora kubagwa igicuri . Umuganga wawe azagusobanurira ubwoko bw'ubuvuzi uzakora n'icyo witeze.

Ese iyi ndwara ishobora gukurwaho burundu hakoreshejwe kubagwa?

Umuganga wawe ashobora kuba ashobora gukuraho iyi ndwara. Ibi bizaterwa n'ibintu byinshi:

• Ni ubuhe bwoko bwa dysplasia y'umutima urwaye?
• Indwara y'igicuri itangirira he mu bwonko?
• Uburemere bw'indwara ya dysplasia.

Niba umuganga ashobora gukuraho utwo turemangingo tudasanzwe nta kwangiza imikorere y'ubwonko bwawe, ni byiza cyane. Gukuraho utwo turemangingo bishobora kugabanya inshuro zo gukubita no kugabanya ingano y'imiti ukeneye gufata. Ariko, rimwe na rimwe iyo ugomba gukuraho utwo turemangingo twose tudasanzwe, ushobora no gukuraho utwo turemangingo twiza tw'ubwonko.Ibi nibibaho, ubushobozi bwawe bwo kwimuka, kubona no kumva mu bundi buryo bushobora kugira ingaruka. Umuganga wawe azagusobanurira ibyiza n'ibibi byose by'ubu buryo bwo kubaga kandi agufashe gufata icyemezo niba bukubereye.

Ubundi buryo ni ugutandukanya utwo turemangingo tudasanzwe n'ibindi bice by'ubwonko. Ibi bihagarika ikwirakwira ry'indwara y'igicuri muri utwo turemangingo. Hari igihe umuganga ubaga ashobora no gusenya utwo turemangingo tudasanzwe akoresheje "ubuvuzi bwa laser", butari bufite ingaruka mbi cyane kandi budatera indwara nk'uko bikunze kubagwa ubwonko.

Ese dysplasia y'umutima iteye ubwoba ingana iki?

Indwara iyo ari yo yose igira ingaruka ku bwonko ishobora kuba ikomeye. Indwara ya Cortical dysplasia ni imwe muri izo ndwara. Ariko ntugahangayike . Muganga wawe azashaka uburyo bwo kuvura igicuri cyawe n'ibindi bimenyetso. Buhoro buhoro, uzashobora kugabanya ingaruka iyi ndwara igira ku buzima bwawe bwa buri munsi.

Ese ibi bishobora gukira burundu?

Birashoboka, cyane cyane nyuma yo kubagwa, ko utazongera kugira igicuri ukundi. Ibyo ni ikibazo gikomeye!

Ariko, dysplasia y'umutima si "umuti" nko gufata umuti w'ibicurane. Ubuvuzi bwibanda cyane ku kuvura ibimenyetso n'igicuri kuruta gushaka umuti .

Ubuzima buzaba bumeze bute muri iki kibazo?

Ubusanzwe indwara ya Cortical dysplasia ntabwo itera ibibazo bikomeye cyangwa ngo igire ingaruka ku buzima bwawe. Iyo ni inkuru nziza. Ariko, niba ukunze kugira indwara ikomeye yo gucika intege (cyane cyane indwara ya tonic-clonic), ishobora kongera ibyago byo gupfa mbere gato . Niba uhangayikishijwe n'uburyo ibi bishobora kugira ingaruka ku buzima bwawe bw'igihe kirekire, vugana na muganga wawe. Ashobora kugufasha kugira umutekano n'ubuzima bwiza.

Ni ryari twagombye kubonana na muganga?

Muganga wawe azakubwira inshuro ugomba kugaruka (`gukurikirana`) n'ibizamini ugomba gukora. Mu ntangiriro, cyane cyane nyuma yo gutangira kuvurwa na mbere na nyuma yo kubagwa, uzakenera kubonana na muganga wawe kenshi.

Icy'ingenzi: Niba ufite indwara zo mu mutwe (epilepsy) nyinshi, cyangwa niba zisa n'izikomeye kurusha mbere, menya neza ko wabibwiye muganga wawe . Bishobora kuba ikimenyetso cy'uko imiti yawe igomba guhinduka, cyangwa ushobora kuba urimo urwara igicuri kidakira imiti.

Ukora iki mu gihe cy'impanuka?

Niba ufite isereri imara iminota irenga itanu, cyangwa niba ufite isereri nyinshi zikurikiranye, hamagara 911 (cyangwa nimero y'ubutabazi bw'ibanze yo mu gace utuyemo) ako kanya. Iki ni ikibazo cyihutirwa.

Ibibazo by'ingenzi ugomba kubaza muganga wawe

Iyo ugiye kwa muganga wawe, ntugatinye kubaza ibibazo nk'ibi:

• Ni ubuhe bwoko bwa dysplasia y'umutima mfite?
• Ese imiti y'igicuri irangirira akamaro?
• Ni ryari nkwiye gutekereza ku kubagwa?
• Ni ubuhe bwoko bw'ubuvuzi bubereye kuri njye?

Biragoye kwiyumvisha uburyo uturemangingo duto duto mu bwonko dushobora kugira ingaruka zikomeye ku buzima bwacu. Ariko, baza muganga wawe cyangwa umuganga w’inzobere mu kubaga ikibazo icyo ari cyo cyose cyangwa impungenge ufite . Bazagusobanurira byose ukeneye kumenya ku bibera mu bwonko bwawe no ku mubiri wawe, n'icyo bashobora gukora kugira ngo bagufashe kumva umeze neza.

Dore incamake y'ibyo twaganiriyeho (Ubutumwa bwo Gufata Umuhana):

Noneho rero, ubu usobanukiwe neza indwara ya Cortical Dysplasia twavuzeho uyu munsi. Wibuke:

• Iyi ni indwara ibaho iyo uturemangingo tw’ubwonko tudakuze neza, bikaba byatera indwara y’igicuri .
• Ibi bishobora guterwa n'impamvu z'uturemangingo .
• Ikimenyetso nyamukuru ni ubwoko butandukanye bw'indwara z'igicuri .
• Ibi bigaragazwa binyuze mu bipimo byihariye nka MRI.
• Uburyo bwo kuvura burimo imiti, indyo ya ketogenic, ndetse nibiba ngombwa, no kubagwa .
• Aho kuvuga ku "gukira burundu", ni ngombwa kugenzura ibimenyetso .
• Birashoboka kubaho ubuzima busanzwe ufite iyi ndwara, ariko ugomba kwitondera indwara y'igicuri ikomeye.
• Ni ingenzi cyane gukomeza kuvugana na muganga wawe no gukurikiza amabwiriza ye.

Niba wowe cyangwa undi muntu uzi afite ibi bimenyetso, ntutindiganye kujya kwa muganga kugira ngo akugire inama. Gusuzuma indwara hakiri kare no kuyivura bishobora kugira ingaruka zikomeye.

` Kurwara indwara zo mu bwonko, igicuri, ihungabana ry'ubwonko, indwara zo mu bwonko zifata imyanya ndangagitsina, ihungabana ry'ubwonko, igicuri, igicuri cyo mu bwana, indwara z'uturemangingo