Ese umubiri wawe warafashe, ariko ubwenge bwawe buri mu mudendezo? Reka tuvuge kuri Locked-in Syndrome (LiS)

Tekereza ushobora kumva no kumva ibyo ushaka byose, ariko ntushobore kuvuga cyangwa kwimura umubiri wawe ... nk'aho uri mu mutego mu mubiri wawe. Ese ntukumva unaniwe gutekereza kuri ibi? Ubwo ni bwo bwoko bw'indwara mbi, ariko idakunze kugaragara mu mitsi tugiye kuvugaho uyu munsi. Ibi byitwa Locked-in Syndrome, cyangwa `(LiS)` mu magambo ahinnye.

Indwara yo mu mutwe (Locked-in Syndrome) ni iki?

Mu magambo make, indwara yo mu bwonko iterwa n’imitsi idakunze kugaragara aho imitsi yawe yose ikora ku bushake, usibye imitsi igenzura imyitwarire y’amaso yawe, iba idakora. Ibi bivuze ko udashobora gukora ikintu icyo ari cyo cyose wifuza gukora, nko kwimura amaboko cyangwa amaguru yawe, kuvuga, cyangwa kugaragaza amarangamutima yawe mu maso.

Ariko igitangaje ni uko umuntu uri muri iyi mimerere afite ibyumviro bye byose, ubwenge bwe, no kwibuka nk'ibisanzwe. Ashobora kumva no gusobanukirwa ibiri kuba hafi ye. Ariko nta buryo afite bwo kubyitabira. Ni nk'umuntu ufungiye mu mubiri we, udashobora kuvuga cyangwa kwimuka.

Aba bantu bakunze kuvugana bazunguza amaso hejuru no hasi, cyangwa bahumbya amaso, ibyo bakaba bashobora kugenzura. Hari igihe bakoresha ikoranabuhanga ryihariye ribafasha muri urwo rwego.

Impamvu nyamukuru y'iyi ndwara ni ukwangirika kw'igice runaka cy'ubwonko bwacu cyitwa pons. Tuzabivugaho birambuye nyuma.

Ni ubuhe bwoko bw'ingenzi bwa locked-in syndrome (LiS)?

Ubwoko butatu bw'ingenzi bwa locked-in syndrome (LiS) bwaragaragaye. Reka turebere hamwe ibyo ari byo.

1. Uburyo bwa kera

Ubu ni bwo buryo bukunze kugaragara cyane. Muri iki gihe, umubiri wose uba udashobora kugenda na gato. Ibyo bivuze ko badashobora gukora ingendo iyo ari yo yose ku bushake bwabo. Ariko, bashobora kuzamura amaso yabo hejuru no hasi no guhumbya. Nanone, ubwenge bwabo n'ubwenge bwabo biguma ari ibisanzwe. Bashobora kumva ibintu bibaho neza hirya no hino.

2. Ifishi ituzuye

Ibi ni kimwe n'ubwoko bwa kera. Ni ukuvuga ko nubwo umubiri wose waba udafite ubuzima, amaso ashobora kuzamuka no kumanuka, agahumbya. Ariko, muri iki gihe, rimwe na rimwe hashobora kubaho kugenda no kumva bimwe mu bice bimwe by'umubiri. Iryo ni ryo tandukaniro rito hano.

3. Uburyo bwose bwo kutabasha kugenda

Iyi ni yo miterere ikabije kandi idakunze kugaragara. Muri ibi, umubiri wose uracika intege burundu, kandi ubushobozi bwo kwimura amaso burabura. Ariko, igitangaje ni uko aba bantu bafite ibitekerezo n'ubwenge bisanzwe. Abaganga babyemeza bapima imikorere ya cortex yo mu bwonko (imikorere ya cortex) bakoresheje ibizamini nka ``electroencephalogram - EEG)``, bipima imiraba y'ubwonko.

Ni nde ushobora kurwara indwara yo kwifunga (LiS)?

Mu by’ukuri, iyi ndwara yitwa locked-in syndrome (LiS) ishobora kubaho mu myaka iyo ari yo yose. Ariko, ubushakashatsi bwagaragaje ko ikunze kugaragara cyane mu bantu bari hagati y’imyaka 30 na 50 .

Iyi ndwara ikunze kugaragara gute?

Indwara ya Locked-in syndrome (LiS) ni indwara idakunze kugaragara cyane. Kubera ko rimwe na rimwe ifatwa nabi cyangwa ifatwa nk'indwara, biragoye kubashakashatsi kuvuga neza umubare w'abantu bayirwara buri mwaka. Ariko, muri rusange byemerwa ko idakunze kugaragara cyane.

Ni ibihe bimenyetso bya locked-in syndrome (LiS)?

Ingaruka ku mubiri zishobora gutandukana gato bitewe n'ubwoko bwa locked-in syndrome (LiS) ufite.

Akenshi iyo ubonye umuntu ufite indwara yo mu mutwe (locked-in syndrome) bwa mbere, utekereza ko atazi icyo atekereza, ni ukuvuga ko ari muri koma. Ibi biterwa nuko adashobora gusubiza mu buryo ubwo aribwo bwose. Nyuma ni bwo uzabona ko asobanukiwe.

Ibintu abantu benshi badashobora gukora:

• Guhekenya ibiryo
• Kumira
• Kuvuga
• Isura yo mu maso (nk'iseka, kumva ubabaye)
• Nta kugenda k'umubiri munsi y'amaso

Ibintu abantu benshi bashobora gukora (mu buryo bwa kera n'ubudatungana):

• Ushobora kuzamura amaso yawe hejuru no hasi (ariko ntuyahindure ku ruhande rumwe, ni ukuvuga mu buryo butambitse).
• Ushobora kwikubita ijisho.

Ibintu buri wese (mu buryo bwose) ashobora gukora:

• Ndumva ibintu bibera hafi yanjye, abantu bavuga.
• Ushobora gusobanukirwa igihe umuntu avuga cyangwa asoma ikintu runaka.
• Ushobora gutekereza no gutekereza nk'uko wabikoze mbere yuko iki kibazo kibaho.
• Imikorere yo gusinzira no kubyuka ni ibisanzwe.

Ese wumva ububabare uterwa na locked-in syndrome (LiS)?

Ibi kandi biterwa n'ubwoko bwa Locked-In Syndrome (LiS) ufite.

• Umuntu udashobora kugenda na gato ntabwo yumva ububabare bw'umubiri kuko umubiri we wose uba udashobora kugenda na gato.
• Umuntu ufite imiterere ituzuye ashobora kugira ububabare n'ibindi bintu bimwe na bimwe by'umubiri.

Ni iki gitera indwara yo mu mutwe idakira (LiS)?

Nkuko twabivuze mbere, impamvu nyamukuru itera indwara yo kwihagarika (LiS) ni ukwangirika kw'igice runaka cy'ubwonko bwacu cyitwa pons.

Kwangirika kw'igice cy'ubwonko cya pons

Pons ni igice cy’imitsi gifite ishusho nk’iy’inkweto z’ifarashi. Giherereye hagati ya medulla oblongata, igice cyo hasi cy’ubwonko, n’agace k’ubwonko gagenzura imigendere y’umubiri wacu, cyane cyane kuringaniza.

Pons ni igice cy'ubwonko cyitwa cerebrum, kirimo inzira nyinshi z'ingenzi z'imitsi ihuza ubwonko bwacu, umugongo, na cerebellum. Mu ndwara ya locked-in syndrome, iyo pons yangiritse, ibimenyetso byose by'imitsi biva mu bwonko bijya ku mitsi yo mu mubiri birafungwa. Niyo mpamvu umubiri wose ucika intege. Uku kwangirika kandi bigira ingaruka ku bice biri mu bwonko bigenzura isura n'imivugire. Niyo mpamvu tudashobora kugaragaza amarangamutima mu maso, guhekenya ibiryo, kumira, cyangwa kuvuga.

Impamvu nyamukuru kandi ikunze kwangiza pons ni ischemic stroke cyangwa hemorrhagic stroke, bigira ingaruka ku nzira za corticospinal, corticopontine, na corticobulbar mu gice cy'ubwonko.

• Igisebe cy’umutima gitera indwara yo mu bwonko (ischemic stroke) ni igihe amaraso afunga imitsi ijyana amaraso mu bwonko, bigatuma amaraso adashobora kugera mu bwonko.
• Gucika amaraso mu bwonko ni igihe amaraso atangira gutemba mu bwonko mu buryo butunguranye aturutse ku mitsi iri mu bwonko.

Izindi mpamvu zangiza pons

Uretse indwara yo gucika intege mu bwonko (stroke), hari izindi mpamvu nyinshi zidasanzwe zishobora kwangiza pons, bigatuma habaho indwara yo kubura amaraso (Locked-in syndrome - LiS).

• Kwandura ibice bimwe na bimwe by'ubwonko.
• Ibibyimba cyangwa ibibyimba mu gice cy'ubwonko cyangwa mu gice cy'ubwonko.
• Gukuraho myelin ni ukubura myelin irinda umubiri (myelin) hafi y'uturemangingo tw'imitsi.
• Hari indwara zimwe na zimwe, urugero nka amyotrophic lateral sclerosis (ALS) na Guillain-Barre syndrome .
• Ihungabana ku bakinnyi ba pons.
• Gukoresha ibiyobyabwenge nabi .

Ni gute indwara ya Locked-in syndrome (LiS) ipimwa?

Kubera ko abantu bafite indwara ya “locked-in syndrome” (LiS) badakira ibintu bibabaza (ni ukuvuga kutagira uburyo bwo gukora imitsi) abaganga bakoresha kugira ngo barebe niba bakira neza, abaganga bashobora kubanza kwibeshya ko batazi. Kubwibyo, gusuzuma indwara (LiS) rimwe na rimwe bishobora kugorana kandi bigatwara igihe.

Ikintu cy'ingenzi cyane mu gusuzuma indwara ya “locked-in syndrome” (LiS) ni ukumenya izindi ndwara zishobora gutera ibi bimenyetso. Nanone, nk'igice cya gahunda yo gusuzuma no kuvura, ni ngombwa kumenya icyateye iyi ndwara ya “locked-in syndrome”.

Ibizamini byo gusuzuma indwara

Abaganga bakoresha ibizamini byinshi kugira ngo bapime indwara ya locked-in syndrome (LiS), bamenye impamvu, kandi bagaragaze ko nta zindi ndwara zihari.

• Isuzuma rya MRI (Magnetic Resonance Imaging - MRI) cyangwa isuzuma rya CT (Computed Tomography - CT): Ibi bizamini bishobora kureba niba hari ibyangiritse kuri pons zawe cyangwa ibindi bice by'ubwonko bwawe.
• Angiografiya yo mu bwonko: Iki kizamini gishobora kugaragaza niba hari amaraso yacitse mu mitsi y'ubwonko cyangwa ahandi hantu mu bwonko.
• Electroencephalogram (EEG): Ibi bipima imikorere y'amashanyarazi y'ubwonko. Ibi bituma abaganga bareba niba imikorere y'ubwonko bwawe n'ingendo zo gusinzira no kubyuka ari ibisanzwe. Bishobora gufasha gutandukanya LiS n'izindi ndwara.
• Ubushobozi buturutse ku bushobozi: Ubu buryo bupima imikorere y'amashanyarazi mu bice by'ubwonko n'umugongo mu gusubiza ibintu nk'ububabare, kumva, cyangwa ibintu bigaragarira amaso. Abaganga babukoresha mu gusuzuma uburyo ubwonko bukora bwangiritse n'uburyo ubwonko bukora neza.
• Electromyography: Iki kizamini gipima uburyo imitsi n'imitsi yawe bikora neza. Iki kizamini gishobora gukoreshwa mu gusuzuma niba imitsi n'imitsi byangiritse.
• Ibizamini by'amaraso: Isuzuma ry'imikorere y'umubiri, cyane cyane hagenzurwa urugero rwa sodium mu maraso, rishobora gufasha kumenya niba indwara yitwa pontine myelinosis ari yo itera.
• Ikizamini cya CSF: Ibi bishobora gufasha kumenya niba ubwandu cyangwa indwara y’ubwiyongere bw’umubiri ari byo bitera ibimenyetso.

Indwara ya Locked-in syndrome (LiS) ivurwa ite?

Mu by'ukuri, nta muti cyangwa uburyo bwihariye bwo kuvura indwara ya “locked-in syndrome” (LiS) ihari. Ikintu cyonyine cyakorwa, niba bishoboka, ni ukuvura icyateye iyi ndwara no gukumira izindi ngorane.

Kuvura indwara ya locked-in syndrome bikubiyemo uburyo bwo kuvura bufasha no guhugura abantu mu itumanaho .

Ubuvuzi bufasha

Kwita ku guhumeka no kugaburira ni ingenzi, cyane cyane mu ntangiriro. Abantu barwaye LiS bakunze gukenera ubufasha bwo guhumeka bw'ubukorano. Bakorerwa kandi tracheotomy (umuyoboro winjizwa mu mwobo muto uri mu ijosi ugana mu muhogo w'umuyaga).

Kubera ko atari byiza kurya cyangwa kunywa ukoresheje LiS, aba bantu bakunze kugira umuyoboro muto witwa gastrostomy tube (G-tube) winjizwa mu nda yabo. Aha niho batanga ibiryo n'amazi.

Ubundi buryo bwo kuvura bukubiyemo:

• Kurinda ingorane zishobora guterwa no kutagenda neza. Urugero:Ibintu nk'umusonga, indwara zo mu nzira y'inkari (UTI), n'amaraso afungana (thrombosis).
• Kurinda imvune zo mu gitutu/ibisebe byo ku buriri .
• Gutanga ubuvuzi bw'umubiri kugira ngo wirinde ko ingingo zihagarara, ari ukubura uburyo bwo kugenda bitewe no gukomera kw'ingingo, imitsi, cyangwa ingingo zoroshye z'ingingo.
• Gutanga ubuvuzi bw'umubiri kugira ngo wongere imikorere y'umubiri isigaye cyangwa iyo ugarutse ku bushake (niba ihari).

Amahugurwa mu itumanaho

Abaganga b'imivugire bashobora gufasha abantu bafite indwara ya Locked-in syndrome (LiS) kuvugana neza binyuze mu kuzenguruka amaso no guhumbya. Ubu buryo bwo kuvugana ni umwihariko kuri buri muntu. Urugero, kureba hejuru bishobora gusobanura "yego" naho kureba hasi bishobora gusobanura "oya" (cyangwa se mu buryo bunyuranye). Nanone, iyo undi muntu asomye ibaruwa, ashobora kwerekana inyuguti ashaka gukoresha mu gukora amagambo n'interuro.

Uretse ibimenyetso by’uburyo amaso agenda, ibikoresho by’itumanaho bya elegitoroniki , nk’ibikoresho by’ikoranabuhanga bipima uburyo amaso agendamo bya infrared n’ibikoresho by’ikoranabuhanga bikoresha ijwi bya mudasobwa, byatumye abantu bafite LiS bashobora kuvugana mu bwisanzure no gukoresha interineti.

Ese birashoboka gukira burundu indwara ya locked-in syndrome (LiS)?

Bitewe n'icyateye indwara ya Locked-in syndrome (LiS), ubushobozi bumwe na bumwe bwo gukora imitsi bushobora kugaruka. Ariko, gukira burundu ni gake cyane. Hari abantu bafite LiS bashobora kugira ingendo n'amarangamutima mu bice bimwe na bimwe by'umubiri wabo.

Abantu benshi ntibasubirana imikorere y'imitsi yatakaye, ariko bashobora kwiga kuvugana binyuze mu ngendo z'amaso.

Ese indwara ya “locked-in syndrome” (LiS) ishobora kwirindwa?

Ikibabaje ni uko inyinshi mu ndwara ya “locked-in syndrome” (LiS) zidashobora kwirindwa. Ariko, niba ufite ibyago byinshi byo kurwara indwara yo mu bwonko, ibyago byo kurwara LiS nabyo bishobora kwiyongera.

Vugana na muganga wawe ku byerekeye ibyago byawe byo kurwara indwara yo mu bwonko n'uburyo bwo kugabanya ibyo byago.

Ni iki kizere cy’umuntu ufite indwara ya “locked-in syndrome” (LiS)?

Igipimo cy’indwara ku bantu barwaye indwara ya “locked-in syndrome” (LiS) giterwa n’impamvu y’uburwayi, ubwoko bw’indwara, n’urwego rw’ubufasha n’ubuvuzi bahabwa.

Ubushakashatsi buherutse gukorwa bwagaragaje ko abantu bafite LiS bagaragaje ubuzima bwiza kandi bufite intego, cyane cyane iyo bahabwaga serivisi nziza z'imibereho myiza n'ikoranabuhanga rijyanye n'imimerere ryabafashije kugira uruhare rusanzwe mu ngo no muri sosiyete.

Abantu benshi bafite LiS bashobora gukoresha intebe y'abamugaye ifite moteri na mudasobwa ifite ikoranabuhanga rijyanye n'imimerere.

Ushobora kumarana igihe kingana iki n'indwara ya “locked-in syndrome” (LiS)?

Hari abantu barwaye indwara ya “locked-in syndrome” (LiS) badashobora gukomeza kubaho nyuma y’inshuro za mbere z’iyi ndwara, bitewe n’ibibazo by’uburwayi. Ariko, abandi bamara imyaka 10 kugeza kuri 20 kandi bavuga ko ubuzima bwabo bumeze neza.

Ni gute nakwiyitaho, cyangwa umuntu urwaye LiS?

Niba ufite indwara ya Locked-in syndrome (LiS), ni ngombwa ko witabwaho neza kugira ngo wirinde ingorane nk'umusonga n'ibisebe byo mu buriri biterwa no kutabasha kugenda.

Ni ngombwa kandi gushaka uburyo bwo kuvugana - byaba binyuze mu buryo bwo gukora imyitozo ngororamubiri cyangwa ikoranabuhanga rifasha mu bijyanye no gukurikirana amaso. Tekereza kwinjira mu itsinda rishinzwe gufashanya kugira ngo uhure n'abandi bahuye n'ibintu nk'ibyo.

Niba wita ku muntu ufite `(LiS)` , ni ngombwa ko umukorera ubuvugizi kugira ngo ahabwe ubuvuzi bwiza kandi abone ikoranabuhanga rimufasha kuvugana no kwigenga kurushaho.

Amaherezo, ikintu cy'ingenzi cyane (Ubutumwa bwo kujyana mu rugo)

Indwara ya Locked-in Syndrome (LiS) ni indwara idakunze kugaragara kandi ikomeye. Gusuzuma indwara nk'iyi bishobora kugutera ubwoba. Ariko ibuka ko itsinda ry'abaganga bawe ririho kugira ngo rigufashe wowe n'abakunzi bawe. Ni ngombwa gukomeza guhabwa ubuvuzi bwiza no kwiga uburyo bushya bwo kuvugana mu gihe ubana na LiS.

Bitewe n'ubuvuzi bugezweho n'iterambere ry'ikoranabuhanga muri iki gihe, abantu benshi barwaye indwara ya Locked-In Syndrome (LiS) babayeho ubuzima bwuzuye kandi bufite intego. Bityo rero ntugacike intege. Hariho igisubizo kuri buri kibazo, uburyo bwo guhangana na buri kibazo.

` Indwara yo mu bwonko, Pons, indwara zo mu bwonko, Neurology, Paralysis, Communication