Urashaka kumenya ibyerekeye ALS (Amyotrophic Lateral Sclerosis), indwara ifata uturemangingo tw'imitsi yawe?

Ese hari igihe wumva ugiye gusara, ingingo zawe zigashira, cyangwa amagambo yawe agaseseshwa iyo uvuga? Ibi bishobora kuba ibintu bisanzwe. Ariko, ni gake cyane, bishobora kuba ikimenyetso cy'ikintu gikomeye kurushaho. Uyu munsi tugiye kuvuga ku ndwara igoye gato, ariko ni ngombwa cyane kuyimenya. Iyo ni ALS, cyangwa Amyotrophic Lateral Sclerosis .

ALS (Amyotrophic Lateral Sclerosis) ni iki? Reka tubisobanukirwe mu buryo bworoshye!

Tekereza ubwonko bwawe n'umugongo wawe (umutsi uri mu mugongo wawe) nk'igikoresho cy'ingenzi cyo kugenzura mudasobwa. Ibi ni byo bigenzura buri kintu cyose kiri mu mubiri wawe. Muri ubu buryo, hari ubwoko bwihariye bw'uturemangingo twitwa 'neurons' . Bikora nk'intumwa nto. Utu turemangingo tw'imitsi dutwara ubutumwa buva mu bwonko bujya mu maguru no mu mitsi yacu, tukabubwira kubikora.

Noneho, muri iyi ndwara yitwa ALS, ikiba ni uko uturemangingo tw’imitsi (`neurons`) wavuze twangiritse . By’umwihariko, uturemangingo tw’imitsi tugenzura ingendo z’umubiri wacu ni two tuba twibasiwe cyane hano. Ni nk’aho izo ntumwa zidashobora gukora akazi kazo. Bigenda bite se? Ubutumwa buva mu bwonko ntibujya mu mitsi neza. Buhoro buhoro, iki kibazo kirushaho kuba kibi .

Mu ntangiriro, ushobora kumva ufite intege nke mu ngingo zawe, nk'aho imitsi yawe irimo kunyeganyega (`imitsi iranyeganyega`) . Ushobora gusanga bigoye kugenda wenyine, gufata ukuboko kugira ngo ufate ikintu, guhekenya ibiryo, cyangwa kuvuga neza. Uko igihe kigenda gihita, imitsi, bitewe no kutagira icyo ikoresha, itangira kunyeganyega (`atrophy`) . Ni nk'imashini idakoreshwa kandi ikagwa ingese. Amaherezo, iyi ndwara ishobora kugira ingaruka ku guhumeka kwawe. Rimwe na rimwe ishobora gushyira ubuzima mu kaga.

Ushobora kuba warumvise indwara ya Lou Gehrig . Ni cyo ALS ivuga. Lou Gehrig yari umukinnyi wa baseball uzwi cyane mu myaka ya 1920 na 1930. Na we yari afite iyi ndwara.

Ndetse no mu gihugu nka Amerika, imibare igaragaza ko abantu bagera ku 5.000 bavurwa indwara ya ALS buri mwaka. Nubwo ibi bidakunze kugaragara cyane, bikwiye gufatwa nk'indwara ishobora kugaragara kuri buri wese.

Nta muti uraboneka kugeza ubu . Ariko ntugahangayike. Uburyo bwo kuvura burimo gutera imbere umunsi ku wundi. Hamwe n'uburyo bwiza bwo kuvura, birashoboka kugenzura ikwirakwira ryihuse ry'iyi ndwara no kunoza ubuzima ku rugero runini.

Hari ubwoko bubiri bw'ingenzi bwa ALS.

ALS ishobora kugabanywamo ubwoko bubiri bw'ingenzi bitewe n'uko ikura:

1. ALS isanzwe: Iyi ni yo ndwara ikunze kugaragara cyane.. Hafi 90% by'abarwayi ba ALS bari muri iki cyiciro. Ibi ni ibintu bitunguranye gusa. Ibyo bivuze ko atari umurage. Biragoye kumenya neza impamvu bibaho.

2. ALS yo mu muryango: Iyi ndwara ikunze kugaragara cyane, ikaba ingana na 10% by'abarwayi. Iterwa n'impinduka mu miterere y'uturemangingo . Ibi bivuze ko iyi ndwara iterwa n'inenge mu miterere y'uturemangingo twarazwe na nyina cyangwa se.

Ni ibihe bimenyetso bya ALS? Reka turebe.

Ibimenyetso bya ALS bishobora gutandukana gato bitewe n'umuntu, kandi bihinduka uko igihe kigenda gihita. Mu ntangiriro, bimwe mu bimenyetso bishobora kuba bitagaragara neza ku buryo bisa n'aho bitagaragara.

• Intege nke z'imitsi mu maboko, amaguru, no mu ijosi: Kumva utari muzima. Biragoye guterura cyangwa gufata ikintu.
• Kubabara imitsi: Gukomera mu buryo butunguranye kandi bubabaza imitsi.
• Kumva imitsi y'amaboko, amaguru, ibitugu n'ururimi bihindaguritse: nk'aho hari akantu gato kavuye imbere.
• Kugorama kw'imitsi (`spasticity`): Kumva ukomeretse, nk'urugingo rukomeye rw'igiti, nk'aho bigoye kurigora cyangwa kurigorora.
• Ingorane zo kuvuga: Imvugo idasobanutse neza, ingorane zo kuvuga amagambo neza, n'impinduka mu ijwi.
• Kugorwa no kumira cyangwa gutemba amate kenshi.
• Kumva unaniwe igihe cyose (umunaniro).
• Kugorwa no kumira ibiryo cyangwa amazi (dysphagia): Kumva ko ibiryo byafashe cyangwa ko bigoye kumira.
• Amarangamutima atunguranye, nko guseka cyangwa kurira, arenze urugero: Ushobora kurira utababaye, cyangwa ugaseka nta mpamvu. Ibi kandi byitwa 'Pseudobulbar affect' mu buryo bw'ubuvuzi.

Mu ntangiriro, ibimenyetso bikunze kugaragara ni intege nke no kunanuka mu maboko no mu maguru, kugorwa no kuvuga, no kugorwa no kumira. Ibi bishobora gutuma bigorana gukora imirimo ya buri munsi nko kwandika no kurya. Uko igihe kigenda gihita, ibi bimenyetso bikunze gukwirakwira mu mubiri wose. Ariko, uburyo ibi bimenyetso byihuta bigenda bitandukana bitewe n'umuntu ku giti cye.

Uko ibimenyetso birushaho kwiyongera , bishobora kugorana guhumeka, guhagarara cyangwa kugenda. Ushobora kandi kugabanuka ibiro mu buryo butunguranye. Niba ufite ibi bimenyetso kandi bisa nkaho birushaho kwiyongera, menya neza ko wagiye kwa muganga . Niba ufite ikibazo cyo guhumeka , ni ikibazo cyihutirwa kandi ugomba kujya kwa muganga vuba.

Kuki iyi ndwara yitwa ALS ibaho? Ni iyihe mpamvu?

Mu by’ukuri, abashakashatsi ntibaramenya neza impamvu ya ALS, ariko bizera ko ishobora kuba iterwa n’ibintu byinshi.

• Ibyerekeye imiterere y'uturemangingo:Twavuze ku bijyanye na ALS ikomoka ku rurango. Rero, hari impinduka zimwe na zimwe zikomoka ku rurango. Izi mpinduka zikomoka ku rurango zigaragara ku bantu bagera kuri 70% barwaye ALS ikomoka ku rurango, naho hagati ya 5% na 10% barwaye ALS bakunze kurwara rimwe na rimwe. By'umwihariko, impinduka zikomoka ku rurango `C9orf72`, `SOD1`, `TARDBP` na `FUS` ni zo zikunze kuvugwa cyane. Hagaragaye ko rurango zirenga 40 zifitanye isano n'ibi.
• Ibintu bidukikije: Hari igihe uburozi (nk'uburozi bw'isasu cyangwa mercure ), virusi zimwe na zimwe, cyangwa ihungabana ku mubiri bifatwa nk'ibibigiramo uruhare, ariko ibi biracyari mu bushakashatsi.

Icyo abashakashatsi bashoboye kwemeza ni uko iyi ndwara yangiza imitsi yacu itwara imizigo . Iyi mitsi ni uturemangingo tw’imitsi tugenzura ibintu dukora tubigambiriye, nko kuvuga, guhekenya ibiryo, kwimura amaguru n’amaboko yacu, no guhumeka.

Tekereza ko ubwonko bwawe n'imitsi bifite isano nk'umurongo wa telefoni. Uturemangingo tw'imitsi twohereza ubutumwa ku mitsi binyuze muri uyu murongo, tuyibwira gukora ibi, gukora ibi. Muri ALS, ikimenyetso kuri uyu murongo wa telefoni kirahinduka . Ni nko gutakaza kwakira kuri telefoni. Ubutumwa buva mu bwonko bujya ku mitsi buracikagurika, ntibugaragara neza. Amaherezo, iyi isano irabura burundu, nk'aho guhamagara bihagaritswe. Hanyuma, utwo turemangingo tw'imitsi ntidushobora kohereza ubutumwa bushya. Niyo mpamvu ubona ibyo bimenyetso navuze mbere.

Ese ALS ni indwara umuntu avukana?

Amwe mu moko ya ALS ni ay’uturemangingo, bivuze ko ashobora guhererekanywa kuva ku gisekuru kugeza ku kindi. Ushobora kuragwa impinduka za genetike zitera ALS ziturutse ku babyeyi bawe. Ariko, ubu bwoko bwa ALS (`ALS y’urubyaro`) ntabwo bukunze kugaragara cyane . Akenshi, impinduka za genetike zibaho ku buryo butunguranye, bivuze ko zishobora kubaho nubwo nta muntu wo mu muryango wawe wigeze agira iyo ndwara mbere.

Ni nde ufite ibyago byinshi byo kurwara ALS?

Nubwo umuntu wese ashobora kurwara ALS, byagaragaye ko hari abantu bafite ibyago byinshi kurusha abandi.

• Imyaka: Abantu bari hagati y'imyaka 55 na 75 ni bo bashobora kugira ibimenyetso byinshi.
• Ubwoko n'ubwoko: Amakuru agaragaza ko abazungu (abatari Abanya-Hispanic) bafite amahirwe menshi yo kurwara indwara ya ALS.
• Igitsina: Mu bantu bari munsi y'imyaka 55, abagabo ni bo bafite amahirwe menshi yo kurwara iyi ndwara kurusha abagore.
• Abahoze ku rugerero: Ubushakashatsi bumwe bwerekana ko abasirikare bashobora kuba bafite ibyago byinshi. Abashakashatsi bemeza ko ibi bishobora guterwa no guhura n'ibintu bifitanye isano n'ibidukikije (nk'uburozi cyangwa imiti yica udukoko).) cyangwa impanuka z'umubiri zibaho mu gihe cy'akazi.

Ni izihe ngorane zishobora guterwa na ALS?

Uko ibimenyetso by'iyi ndwara bigenda birushaho gukomera, ikibabaje ni uko igihe cyo kubaho gishobora kugabanuka . Kwiga kuri iyi ndwara no kuyirwanya buri munsi bishobora kugorana cyane mu mutwe. Ushobora kumva uremerewe, wabuze icyo ukora, wihebye, kandi ufite stress. Kubera iyo mpamvu, abantu benshi basanzwe barwaye ALS nabo bahura n'ibibazo by'ubuzima bwo mu mutwe nko kwiheba no guhangayika .

Hari abaganga benshi n'abaforomo bashobora kugufasha kwita ku buzima bwawe bw'umubiri. Ariko kandi ni ngombwa kwita ku buzima bwawe bwo mu mutwe . Niba ukeneye ubufasha, vugana n'itsinda ry'abaganga cyangwa umujyanama mu by'ubuzima bwo mu mutwe .

Ni gute abaganga basuzuma neza indwara ya ALS?

Muganga azabanza kugusuzuma umubiri (`ikizamini cy'umubiri`) , hanyuma agukorere `ikizamini cy'imitsi` . Byongeye kandi, hari ibindi bizamini byinshi bikorerwa kugira ngo hamenyekane niba ufite ALS.

Ushobora kutabasha guhita umenya ko ufite ALS. Ushobora kujya kwa muganga wawe inshuro nyinshi, cyangwa ushobora kujya kwa muganga w’inzobere nyinshi. Muganga wawe azagutegeka ibizamini bitandukanye kugira ngo arusheho gusuzuma ibimenyetso byawe no kureba uburyo bigira ingaruka ku mubiri wawe. Ibi biterwa nuko hari izindi ndwara nyinshi zifite ibimenyetso bisa na ALS. Kubwibyo, ni ngombwa gukora ibi bizamini byose bitandukanye kugira ngo hamenyekane neza indwara .

Ni ibihe bipimo bikoreshwa mu gusuzuma ALS?

Kugira ngo wemeze ko indwara yanduye, ushobora gukenera gukora ibizamini byinshi, urugero:

• Gupima amaraso: Kugira ngo hamenyekane neza ko nta zindi ndwara.
• Ibipimo by'inkari: Ibi bikorwa kandi kugira ngo harebwe izindi mpamvu.
• Electromyogram (EMG): Iyi ikoreshwa mu kugenzura imikorere y'imitsi. Igenzura niba ubutumwa bwoherezwa buva mu mitsi bujya mu mitsi neza.
• Inyigo y'uburyo imitsi ikora: Iyi isuzuma uburyo imitsi ishobora kohereza ibimenyetso.
• Ishusho ya Magnetic Resonance (MRI): Iyi foto ifata ubwonko bwawe cyangwa uruti rw'umugongo kugira ngo harebwe niba hari icyangiritse. Ishobora kandi kugenzura niba hari izindi ndwara (nk'ikibyimba) zitera ibimenyetso.

Ni ubuhe buryo bwo kuvura ALS? Nubwo nta muti uhari, ese hari ubutabazi?

Ikibabaje ni uko nta muti uraboneka ushobora gusubiza inyuma ibyangiritse ku turemangingo tw’imitsi biterwa na ALS. Ariko ntugahangayike. Ubuvuzi bushobora kugabanya izamuka ry’ibimenyetso no kugufasha kuguma umerewe neza uko bishoboka kose.

Ikipe y'abaganga bawe ishobora kukugira inama yo kuvura indwara nk'izi:

• Imiti
• Uburyo butandukanye bwo kuvura cyangwa gahunda zo kugarura ubuzima
• Inkunga y'imirire
• Inkunga ku bibazo byo guhumeka

Uko indwara ikomeza kwiyongera, ushobora gukenera ubwoko butandukanye bw'ubuvuzi cyangwa ubundi buryo bwo kuvura. Byongeye kandi, ushobora guhabwa ubufasha kugira ngo ushobore kubaho mu bwisanzure kandi mu buryo bwiza uko bishoboka kose igihe cyose gishoboka.

Imiti itangwa ku ndwara ya ALS

Hari ubwoko bune bw'imiti yemewe n'Ikigo gishinzwe ibiribwa n'imiti muri Leta Zunze Ubumwe za Amerika (FDA) mu kuvura indwara ya ALS:

• Riluzole: Bikekwa ko ibi bigabanya kwangirika kw'imitsi iyobora. Bishobora kandi gufasha kongera igihe cyo kubaho amezi menshi.
• Edaravone: Uyu muti ushobora kugabanya umuvuduko wo gutakaza imitsi.
• Sodium phenylbutyrate/taursodiol: Ibi bishobora kugenzura umuvuduko w'ikura ry'ibimenyetso.
• Tofersen: Uyu muti ushobora kugabanya bimwe mu byangiritse ku turemangingo tw'imitsi. Ibi bishobora kuba ingirakamaro niba muganga wawe yasanze hari impinduka muri gene yitwa SOD1.

Uretse iyi miti y'ingenzi, hari indi miti ishobora kugufasha kugenzura ibimenyetso byawe. Urugero, ushobora gukoresha imiti yo kuvura imitsi igoramye, kugorama, gucika amacandwe menshi, ububabare, n'ibibazo by'ubuzima bwo mu mutwe.

Uburyo butandukanye bwo kuvura (`Ubuvuzi`)

Muganga wawe ashobora kukugira inama y'uburyo butandukanye bwo kuvura cyangwa serivisi zo gusubiza mu buzima busanzwe, nko:

• Ubuvuzi bw'umubiri: Ibi bigufasha kuguma wigenga kandi ufite umutekano igihe cyose gishoboka. Bikwigisha imyitozo yoroshye ikomeza imitsi kandi igateza imbere ubuzima bwiza muri rusange.
• Ubuvuzi bw'akazi: Ibi byigisha ingamba zo gukora imirimo ya buri munsi utiruhije, ukoresheje ibikoresho bigufasha nko kugendera mu birere cyangwa udukoresho two gufatiraho imitsi.
• Ubuvuzi bwo kuvuga: Ibi bigufasha kumira no kuvugana mu mutekano. Binakwigisha uburyo bwo kuvugana mu buryo budashingiye ku magambo (urugero: ibimenyetso, kwandika) kugira ngo bigufashe kuvuga igihe kirekire gishoboka no kuzigama imbaraga.

Inkunga y'imirire

Ku muntu urwaye ALS, rimwe na rimwe bishobora kugorana kubona intungamubiri akeneye. Kugorwa no kumira bishobora gutuma agabanya ibiro kandi bikagorana kubona vitamine n'imyunyungugu akeneye.

Inzobere mu mirireBigufasha kwirinda ibiryo bigoye kumira no gushyiraho gahunda y'ifunguro ritanga ingano ikwiye ya karori, fibre, n'ibinyobwa. Ubujyanama ku mirire bushobora kugufasha gukomeza kugira indyo yuzuye. Uko kumira birushaho kugorana, inzobere mu by'imirire ishobora no gutanga ubundi buryo bwo kurya bukwiye.

Iyo bibaye ngombwa, umuntu ashobora gukoresha agakoresho ko kugaburira . Ibi bishobora kugabanya ibyago byo kwinjira mu bihaha mu bihaha bigatera indwara nko kubyimba cyangwa umusonga .

Inkunga yo guhumeka

Uko indwara ya ALS ikomeza kwiyongera, guhumeka bishobora kugorana. Hari uburyo bwitwa noninvasive ventilation (NIV) . Ibi bikubiyemo gukoresha agapfukamunwa gapfuka amazuru n'umunwa kugira ngo kagufashe guhumeka. Gashobora gukoreshwa nijoro gusa, ariko nyuma kagakenera gukoreshwa umunsi wose.

Uko igihe kigenda gihita, ushobora gukenera guhumeka mu buryo bwa mechanical, imashini ihumeka yitwa respirateur, kugira ngo igufashe guhumeka no kwinjira no gusohora mu bihaha byawe. Niba ufite ikibazo cyo guhumeka, cyane cyane iyo uryamye cyangwa urimo gukora ikintu icyo ari cyo cyose, bwira itsinda ry’abaganga. Bashobora kukuganiriza ku buryo bwo kugufasha guhumeka neza.

Ni ryari wagombye kujya kwa muganga? Menya ibi bintu

Niba ubonye kimwe muri ibi bimenyetso, gana muganga:

• Niba wumva ufite ikibazo cyo gukora imirimo yawe ya buri munsi .
• Niba ibimenyetso bisa nkaho birushaho kwiyongera .
• Niba uri mu bihe aho udashobora kwimuka uri wenyine.
• Niba ubuvuzi butera ingaruka mbi .

Twamaze kuvuga ku buryo ALS ishobora gutuma guhumeka bigorana. Dore ibimenyetso bimwe na bimwe byerekana ko guhumeka bigoye bishobora gutuma ubonana na muganga:

• Niba wumva ufite ikibazo cyo guhumeka nabi , ndetse no mu gihe uri kuruhuka.
• Niba inkorora isa n'aho idakomeye .
• Niba umuhogo n'ibihaha bidashobora koroherwa byoroshye .
• Iyo amacandwe menshi yirundanyije.
• Niba udashobora kuryama mu buriri (kuko wumva uhumeka).
• Niba ukunze kwandura indwara zo mu gituza (pneumonia) .

Ibi bimenyetso bishobora gutera indwara yitwa gucika intege mu buhumekero . Ibi bivuze ko udashobora guhumeka umwuka uhagije kugira ngo umubiri wawe ubone umwuka ukeneye. Ibi bishyira ubuzima mu kaga . Niba rero ufite ikibazo cyo guhumeka, jya kwa muganga wita ku bibazo byihutirwa vuba .

Ese hari uburyo bwo kwirinda ALS?

Mu by’ukuri, ALS irashobora kwirindwa.Nta muti wemejwe kugeza ubu. Ubushakashatsi burakomeje kugira ngo burusheho gusobanukirwa impamvu n'ibintu bishobora gutera ibi, no guteza imbere uburyo bwo kwirinda mu gihe kizaza.

Ushobora kumarana igihe kingana iki na ALS? Ni iki giteganijwe?

Impuzandengo y'igihe cyo kubaho kwa ALS ni imyaka itatu kugeza kuri itanu nyuma yo kuyirwara. Ariko, bivugwa ko abantu bagera kuri 30% babaho imyaka itanu cyangwa irenga, naho hagati ya 10% na 20% bakabaho nibura imyaka icumi. Imiterere yawe ishobora gutandukana n'iyi mibare . Rero, vugana na muganga wawe kugira ngo umenye byinshi ku bijyanye n'ikibazo cyawe.

Iteganyagihe ry’indwara ya ALS ntabwo ari ryiza cyane, bitewe n’uburyo igira ingaruka ku mikorere y’uturemangingo tw’imitsi. Uko ubona ibintu biterwa n’uburyo uturemangingo tw’imitsi twangiritse vuba. Nubwo nta buvuzi bushobora gusubiza inyuma iyi ndwara, muganga wawe ashobora kuguha amahitamo yo kugabanya kwiyongera kw’ibimenyetso.

Kugeza ubu nta muti uhari wa ALS.

Niba urwaye ALS, ushobora kuba ushishikajwe no kwitabira igerageza ry’ubuvuzi . Ubu bushakashatsi bufasha abashakashatsi gutegura uburyo bushya bwo kuvura no gusobanukirwa neza indwara.

Amaherezo, ikintu cy'ingenzi cyane cyo kwibuka!

Iyo umenye ko urwaye indwara ya amyotrophic lateral sclerosis, cyangwa ALS, ushobora kugira ibibazo byinshi n'ibyiyumvo byinshi.

Ushobora kwibaza uti 'Kuki ibi byambayeho? Ni iki cyabiteye?' Ushobora kumva ubabaye, ubabaye, kandi uremerewe cyane iyo utagishoboye gukora ibintu byakuberaga byoroshye, nko gusokoza umusatsi, kurya ifunguro riryoshye, cyangwa kuganira n'abo ukunda. Ibi bishobora gutera kwiheba no guhangayika, cyane cyane iyo ibimenyetso byawe bikomeje kwiyongera.

Aho waba uri hose cyangwa uko wumva umeze kose, itsinda ry'abaganga bawe riri hano kugufasha . Uburyo bwo kuvura ALS buri kugenda butera imbere buri munsi, kandi uburyo bushya bwo kuvura burimo gukorwaho ubushakashatsi no kugeragezwa. Nubwo nta muti uhari ubu, uburyo bwo kuvura bushobora kugabanya iterambere ry'ibimenyetso no gutuma umara umwanya munini uri kumwe n'abo ukunda. Ntukigere wumva uri wenyine. Saba ubufasha n'inkunga. Imbaraga zawe ni wo mutungo wawe ukomeye.

ALS , Amyotrophic Lateral Sclerosis, Neuropathy, Kurwara kw'imitsi, Lou Gehrig's, Uturemangingo tw'imitsi, Uturemangingo tw'imitsi, Indwara yo guhumeka