Tuberculoze ya Sclerosis ni iki? Ibimenyetso, Impamvu, n’Ubuvuzi

Tuberculoze ya sclerosis ni indwara ivuka mu mubyeyi, itera udukoko tudatera kanseri mu bice bitandukanye by’umubiri wawe. Ibi bice, bitwa hamartomas, bishobora gukura mu bwonko, ku ruhu, mu mpyiko, mu mutima, mu mwijima, no mu zindi ngingo z’umubiri wawe mu gihe cy’ubuzima bwawe.

Nubwo ibi bishobora kugaragara nkiby’akaga, ni ingenzi kumenya ko tuberculoze ya sclerosis igira ingaruka kuri buri wese mu buryo butandukanye. Bamwe bagira ibimenyetso byoroheje bidakora ku buzima bwabo bwa buri munsi, naho abandi bashobora gukenera ubufasha n’ubuvuzi burambuye.

Tuberculoze ya sclerosis ni iki?

Tuberculoze ya sclerosis complex (TSC) ni indwara idasanzwe ivuka mu mubyeyi iterwa no kudakora neza kwa gene zimwe na zimwe. Ibi bituma uturemangingo dukura kandi tugakwirakwira mu buryo budasanzwe, bigatuma habaho udukoko mu ngingo zitandukanye.

Iyi ndwara yiswe uko kubera ibibyimba bisa n’ibirayi (tubers) bishobora gukura mu bwonko n’ibice bikomeye (sclerosis) bishobora kugaragara ku ruhu. Abantu bagera kuri 1 kuri 6,000 ku isi bafite tuberculoze ya sclerosis, bigatuma iba ihari kurusha uko wabyitezeho ku ndwara idasanzwe.

TSC ibaho kuva umuntu avutse, nubwo ibimenyetso bishobora kutagaragara kugeza mu bwana cyangwa se mu bukure. Ubukana bw’iyi ndwara bushobora gutandukana cyane hagati y’abagize umuryango umwe, nubwo baba bafite impinduka imwe ya gene.

Ibimenyetso bya tuberculoze ya sclerosis ni ibihe?

Ibimenyetso bya tuberculoze ya sclerosis biterwa n’aho udukoko dukura n’ubunini bwabyo. Kubera ko iyi ndwara ishobora kugira ingaruka ku ngingo nyinshi, ibimenyetso bishobora kugaragara bitandukanye ku muntu ku wundi.

Dore ibimenyetso bisanzwe ushobora kubona:

• Impinduka ku ruhu nko kugira ibice byera, ibibyimba by’umutuku ku maso, cyangwa ibice bikomeye ku mugongo
• Imihango ishobora gutangira mu buto cyangwa mu bwana
• Gutinda gukura cyangwa kugira ibibazo byo kwiga
• Ibibazo by’imyitwarire, harimo n’imyitwarire yo mu bwoko bwa autism
• Ibibazo by’impyiko bishobora gutera umuvuduko ukabije w’amaraso
• Ibibazo by’umutima, cyane cyane mu bana bato
• Ibibazo by’imwijima bishobora gutera guhumeka nabi

Bamwe bagira kandi ibimenyetso bidakunze kugaragara. Ibi bishobora kuba harimo ibibazo by’ububone kubera ibibyimba mu maso, ibibazo by’amenyo nko kugira amenyo y’iminkanyari, cyangwa impinduka mu gutambuka zigira ingaruka ku gukura.

Ni byiza kumenya ko kugira tuberculoze ya sclerosis ntibivuze ko uzagira ibyo bimenyetso byose. Abantu benshi babaho ubuzima buzuye, bukora, mu gihe bacunga bimwe muri ibyo bimenyetso.

Uduce twa tuberculoze ya sclerosis ni utuhe?

Tuberculoze ya sclerosis ntabwo ifite uduce dutandukanye, ariko abaganga bakunze kuyigabanya hashingiwe ku gene zikora. Hari gene ebyiri zikuru zibonekamo: TSC1 na TSC2.

Abantu bafite impinduka za gene ya TSC2 bakunze kugira ibimenyetso bikomeye kurusha abafite impinduka za TSC1. Ariko, iki si itegeko rihamye, kandi uburambe bwawe bwite bushobora gutandukana cyane n’ibyo gene zonyine zishobora kuvuga.

Bamwe bafite icyo bita tuberculoze ya sclerosis “ya mosaic”, aho imisemburo imwe gusa y’umubiri wabo ari yo ifite impinduka ya gene. Ibi bikunze gutera ibimenyetso byoroheje bishobora kugira ingaruka ku gice kimwe cy’umubiri.

Impamvu za tuberculoze ya sclerosis ni izihe?

Tuberculoze ya sclerosis iterwa n’impinduka (mutations) muri gene zisanzwe zifasha kugenzura uko uturemangingo dukura. Izi gene, zitwa TSC1 na TSC2, zikora nk’ibifunga by’uturemangingo bibabuza gukura vuba cyane.

Iyo izi gene zitakora neza, uturemangingo dushobora gukura no gukwirakwira hatabuze uburyo busanzwe. Ibi bituma habaho udukoko mu ngingo zitandukanye z’umubiri wawe.

Abantu bagera kuri bibiri bya gatatu bafite tuberculoze ya sclerosis barazikomora ku mubyeyi wabo nawe uyifite. Icya gatatu gisigaye barayibonerwa n’impinduka nshya za gene ziba mu buryo butunguranye mu gihe cy’iterambere rya mbere.

Niba ufite tuberculoze ya sclerosis, buri mwana wawe afite amahirwe 50% yo kuyikomora. Ariko, nubwo bayikomora, ibimenyetso byabo bishobora gutandukana cyane n’ibyawe.

Ni ryari ukwiye kubona muganga kubera tuberculoze ya sclerosis?

Ukwiye gushaka ubufasha bw’abaganga niba ubona ibimenyetso byose byavuzwe haruguru, cyane cyane mu bana. Ibimenyetso bya mbere bikwiye gusuzumwa n’abaganga birimo imihango idasobanuka, gutinda gukura, cyangwa impinduka zidasanzwe ku ruhu.

Niba umwana wawe afite ibice byera ku ruhu bitajya byumuka ku zuba, ibibyimba ku maso bisa n’uburwayi bw’urukweto ariko ntibikire, cyangwa imihango iyo ari yo yose, ni byiza kubivugana na muganga w’abana.

Ku bakuru, ibimenyetso bishya nko kubura ubushobozi bw’impyiko, ibibazo by’imwijima, cyangwa impinduka ku bibyimba byari bisanzwe ku ruhu bigomba gutuma ubaza muganga. Nubwo waba umaze igihe ufite ibimenyetso byoroheje bya tuberculoze ya sclerosis, gusuzuma buri gihe bigufasha gukurikirana impinduka iyo ari yo yose.

Ntugatege amatwi niba ufite ibimenyetso bikomeye nko kugira ikibazo cyo guhumeka, imihango idashira, cyangwa impinduka ziteye impungenge mu myitwarire cyangwa mu gukura. Ibi bibazo bikeneye ubufasha bw’abaganga byihuse.

Ibyago bya tuberculoze ya sclerosis ni ibihe?

Ikintu gikuru gitera ibyago bya tuberculoze ya sclerosis ni ukugira umubyeyi ufite iyo ndwara. Niba umubyeyi umwe afite TSC, hari amahirwe 50% yo kuyiha buri mwana.

Ariko, ni ingenzi kumenya ko abantu benshi bafite tuberculoze ya sclerosis badafite ababyeyi bayirwaye. Abantu bagera kuri 60-70% bafite iyo ndwara babiterwa n’impinduka nshya za gene ziba mu buryo butunguranye mu gihe cy’iterambere rya mbere.

Kuba ababyeyi bageze mu zabukuru bishobora kongera gato ibyago by’impinduka nshya za gene, ariko ubu buhunganizi ntabwo bukomeye ku buryo bwatuma biba ikintu gikuru gitera ibyago. Ibintu by’ibidukikije, imibereho, cyangwa izindi ndwara ntabwo bigira ingaruka ku byago byo kurwara tuberculoze ya sclerosis.

Ingaruka zishoboka za tuberculoze ya sclerosis ni izihe?

Nubwo tuberculoze ya sclerosis igira ingaruka kuri buri wese mu buryo butandukanye, kumva ingaruka zishoboka bishobora kugufasha wowe n’itsinda ry’abaganga bawe guhora maso kandi muha ubufasha bwiza bushoboka.

Ingaruka zisanzwe harimo:

• Indwara y’imihago ishobora kuba igoranye kuyirinda hakoreshejwe imiti isanzwe
• Ibibazo by’impyiko, harimo n’ibibyimba bishobora kugira ingaruka ku mikorere y’impyiko
• Ubusembwa n’ubumuga bwo mu mutwe mu rugero rutandukanye
• Imikorere yo mu bwoko bwa autism n’ibibazo byo gutanga amakuru
• Ingaruka ku mutima, cyane cyane mu bana bato
• Indwara y’imwijima ishobora gutera ibibazo byo guhumeka, cyane cyane ku bagore
• Ibibazo by’amaso bishobora kugira ingaruka ku bubone

Bamwe bashobora kugira ingaruka zidakunze kugaragara. Ibi bishobora kuba harimo indwara ikomeye y’impyiko isaba kuvurwa hakoreshejwe imashini, ibibazo bikomeye by’imwijima, cyangwa ibibyimba by’umutima bibangamira imikorere isanzwe y’umutima.

Inkuru nziza ni uko hakoreshejwe gukurikirana no kuvura neza, ingaruka nyinshi zishobora gufatwa neza. Gusuzuma buri gihe n’itsinda ry’abaganga bawe bigufasha kubona ibibazo hakiri kare igihe bishobora kuvurwa.

Tuberculoze ya sclerosis ishobora kwirindwa gute?

Kubera ko tuberculoze ya sclerosis ari indwara ivuka mu mubyeyi, nta buryo bwo kuyirinda. Ariko, niba ufite TSC cyangwa amateka y’iyi ndwara mu muryango wawe, inama z’abaganga ku bijyanye na gene zishobora kugufasha kumva ibyago ku bana bawe b’ejo hazaza.

Isuzuma ryo mu nda riboneka ku miryango ishaka kumenya niba umwana wabo utaravuka yarazikomoye. Aya makuru ashobora kugufasha gutegura ubufasha bw’umwana wawe no guhuza n’abaganga bakwiye hakiri kare.

Nubwo utazibuza tuberculoze ya sclerosis ubwayo, ushobora gufata ingamba zo kwirinda cyangwa kugabanya ingaruka. Ibi birimo gukurikiza gahunda yawe yo kuvurwa, kujya gusuzuma buri gihe, no kugira imibereho myiza.

Tuberculoze ya sclerosis imenyekanwa ite?

Kumenya tuberculoze ya sclerosis bisaba kureba ibimenyetso n’ibigaragara abaganga bita “ibimenyetso byo gupima”. Muganga wawe azasuzumira ku ruhu rwawe, azategeka ibizamini byo gufata amashusho, kandi ashobora kugutegeka ibizamini bya gene.

Uburyo bwo gupima bugiramo gusuzuma umubiri neza kugira ngo harebwe impinduka zidasanzwe ku ruhu. Muganga wawe azakoresha umucyo wihariye witwa Wood’s lamp kugira ngo agaragaze ibice byera bishobora kutaboneka mu mucyo usanzwe.

Ibizamini byo gufata amashusho bigira uruhare rukomeye mu gupima. Ibizamini bya MRI by’ubwonko bishobora kugaragaza udukoko tw’ubwonko, naho ibizamini bya CT by’ibituza n’inda bifasha kumenya udukoko mu mwijima no mu mpyiko.

Isuzuma rya gene rishobora kwemeza uburwayi binyuze mu kugaragaza impinduka muri gene ya TSC1 cyangwa TSC2. Ariko, abantu bagera kuri 10-15% bafite tuberculoze ya sclerosis bagira ibisubizo bisanzwe by’ibizamini bya gene, bityo ikizamini kibi ntikuraho iyo ndwara.

Muganga wawe ashobora kugutegeka ibindi bizamini nko gusuzuma imihango hakoreshejwe electroencephalogram (EEG), gusuzuma umutima hakoreshejwe echocardiogram, no gusuzuma amaso kugira ngo harebwe impinduka mu maso.

Ubuvuzi bwa tuberculoze ya sclerosis ni buhe?

Ubuvuzi bwa tuberculoze ya sclerosis bugamije gucunga ibimenyetso no kwirinda ingaruka kuruta gukiza iyo ndwara. Itsinda ry’abaganga bawe rizakubamo abaganga benshi bakorera hamwe kugira ngo bakemure ibibazo byawe byihariye.

Guca imihango ni ikintu gikuru cyane. Imiti yo guca imihango ishobora gufasha gucunga indwara y’imihago, nubwo bamwe bafite TSC bashobora kenera imiti myinshi cyangwa ubundi buryo nko kuvura hakoreshejwe ibiryo cyangwa kubagwa.

Imiti yitwa sirolimus (izwi kandi nka rapamycin) yagaragaje ko ifasha mu kugabanya udukoko tumwe na tumwe dufatanije na tuberculoze ya sclerosis. Ifasha cyane ku dukoko tw’impyiko n’ibibyimba ku maso.

Ubundi buryo bwo kuvura biterwa n’ingingo zikora:

• Ubuvuzi bw’imyitwarire n’ubufasha mu bijyanye n’uburezi ku bibazo byo gukura
• Imiti cyangwa uburyo bwo kuvura ibibazo by’impyiko
• Gukurikirana umutima no kuvura ibibyimba by’umutima
• Ubufasha mu guhumeka ku bibazo by’imwijima
• Ubuvuzi bw’uruhu ku bibazo by’ubwiza

Gukurikirana buri gihe ni ingenzi nubwo wumva umeze neza. Ibi bifasha itsinda ry’abaganga bawe kubona impinduka iyo ari yo yose hakiri kare no guhindura uburyo bwo kuvura uko bikenewe.

Uburyo bwo gucunga tuberculoze ya sclerosis mu rugo ni buhe?

Gucaunga tuberculoze ya sclerosis mu rugo bisaba kurema ibidukikije byiza no kugira gahunda zihoraho zo kwita ku buzima. Kugira ibitabo byandikwamo ibimenyetso bishobora kugufasha wowe n’itsinda ry’abaganga bawe gukurikirana impinduka mu gihe.

Niba wowe cyangwa umwana wawe afite imihango, menya ko abagize umuryango bazi uburyo bwo gutabara mu gihe cy’imihago. Gabanya imiti yo gutabara kandi ubemeze ko amashuri cyangwa aho ukora azi uburwayi bwawe n’ibikorwa byo gutabara.

Kingira uruhu rwawe ku zuba, kuko ibice byera bifatanije na TSC bidatanga umusemburo ukingira. Koresha amavuta yo kwirinda izuba kandi utekereze ku myambaro ikurinda mu gihe ugiye hanze igihe kirekire.

Mugire imibereho myiza ifite imyitozo ngororamubiri, ibiryo byuzuye, no gusinzira bihagije. Ibi bikorwa bigira uruhare ku buzima rusange kandi bishobora kugabanya uburemere bw’ibimenyetso bimwe nko guhumeka nabi.

Huza n’amatsinda y’ubufasha n’ibigo by’ikoranabuhanga ku bantu bafite tuberculoze ya sclerosis. Gusangira uburambe n’abandi bumva ibibazo byawe bishobora gutanga ubufasha bw’amarangamutima n’amabanga y’ingirakamaro.

Uburyo bwo kwitegura ku muganga ni buhe?

Kwitegura ku muganga bigufasha kugira icyo umara mu gihe cyawe n’umuganga wawe. Tangira wandike ibimenyetso byawe byose, harimo igihe byatangiye n’uko byahindutse mu gihe.

Zana urutonde rwuzuye rw’imiti yose, ibinyobwa, n’imiti y’imirire ufata. Harimo n’ingano n’igihe ufata buri kimwe, kuko ayo makuru afasha muganga wawe kwirinda ibibazo bishobora kubaho.

Tegura urutonde rw’ibibazo ushaka kubabaza. Tekereza kubabaza ku bijyanye n’uburyo bushya bwo kuvura, impinduka mu mibereho zishobora gufasha, cyangwa ubufasha bwo kubona ubufasha bundi.

Niba bishoboka, zana umuntu wo mu muryango cyangwa inshuti yawe ku muganga. Bashobora kugufasha kwibuka amakuru y’ingenzi no gutanga ubufasha bw’amarangamutima mu biganiro ku bijyanye no kuvurwa.

Kora kopi y’ibyemezo byose by’abaganga, ibisubizo by’ibizamini, cyangwa amashusho yafashwe n’abandi baganga. Iyi shusho yuzuye ifasha muganga wawe gutanga inama nziza zo kuvura.

Icyo ukwiye kumenya cyane kuri tuberculoze ya sclerosis ni iki?

Ikintu gikuru ukwiye kumenya kuri tuberculoze ya sclerosis ni uko igira ingaruka kuri buri wese mu buryo butandukanye. Nubwo ari indwara yo mu buzima bwose isaba gucungwa buri gihe, abantu benshi bafite TSC babaho ubuzima buzuye, bufite icyo buvuze.

Kumenya hakiri kare no kuvurwa neza bishobora kunoza cyane ibyavuye mu buvuzi n’imibereho. Gukorana n’itsinda ry’abaganga bamenyereye kandi guhora uhuze n’itsinda rya TSC biguha ishingiro ryiza ryo gucunga iyi ndwara.

Wibuke ko ubushakashatsi kuri tuberculoze ya sclerosis burakomeje, uburyo bushya bwo kuvura n’uburyo bwo gucunga burakomeje gukorwa. Icyo gishobora kugaragara nk’ikibazo uyu munsi gishobora kuba cyoroshye cyane mu gihe hazaza hagendeye ku iterambere ry’ubuvuzi.

Ibibazo bikunze kubazwa kuri tuberculoze ya sclerosis

Tuberculoze ya sclerosis irashobora kwica?

Tuberculoze ya sclerosis ubwayo ntishobora kwica, kandi abantu benshi bafite TSC babaho igihe kirekire nk’abandi. Ariko, ingaruka zikomeye nko kugira indwara y’imihago ikomeye, indwara y’impyiko, cyangwa ibibazo by’imwijima rimwe na rimwe bishobora kwica niba bitavuwe neza. Kwitabwaho n’abaganga buri gihe no gukurikirana bigufasha kwirinda ingaruka zikomeye.

Abantu bafite tuberculoze ya sclerosis bashobora kubyara?

Yego, abantu bafite tuberculoze ya sclerosis bashobora kubyara. Ariko, hari amahirwe 50% yo kuyiha buri mwana. Inyunganizi z’abaganga ku bijyanye na gene zishobora kugufasha kumva ibyo byago no gusuzuma ibintu nko gusuzuma umwana uri mu nda cyangwa uburyo bwo kubyara bufashwa n’ikoranabuhanga niba ubishaka.

Umuntu wanjye ufite tuberculoze ya sclerosis azashobora kujya kwiga mu ishuri risanzwe?

Abana benshi bafite tuberculoze ya sclerosis bajya kwiga mu mashuri asanzwe bafite ubufasha bukwiye. Urwego rw’ubufasha bukenewe rutandukana cyane bitewe n’ibimenyetso n’ubushobozi bw’umuntu. Bamwe mu bana bashobora kenera ubufasha bwihariye mu burezi, naho abandi bakenera ubufasha buke.

Udukoko twa tuberculoze ya sclerosis duhinduka kanseri?

Udukoko dufatanije na tuberculoze ya sclerosis dukunze kuba utudatera kanseri. Ariko, hari ibyago bike byo kurwara kanseri y’impyiko mu gihe kirekire, niyo mpamvu gukurikirana buri gihe ari ingenzi.

Abakuze bashobora kugira ibimenyetso bya tuberculoze ya sclerosis ku nshuro ya mbere?

Nubwo tuberculoze ya sclerosis ibaho kuva umuntu avutse, ibimenyetso bishobora kugaragara igihe icyo ari cyo cyose. Bamwe mu bakuru bapimwa ku nshuro ya mbere iyo bagize ibibazo by’impyiko, ibibazo by’imwijima, cyangwa iyo umwana wabo apimwe TSC kandi gusuzuma umuryango bigaragaza ibimenyetso bitamenyekanye mbere.