PPMS (Sclerosis y'ibanze ikomeza kwiyongera) ni iki? Reka tubiganireho mu buryo bworoshye!

Ushobora kuba warumvise indwara yitwa ` Multiple Sclerosis (MS)`. PPMS (Primary Progressive Multiple Sclerosis) ni ubwoko bwihariye bwa MS. Muri iki gihe, ibimenyetso byawe ntibihita bigaruka, bigashira nyuma y'iminsi mike, hanyuma bikagaruka kenshi. Ahubwo, ibimenyetso byawe bigenda byiyongera buhoro buhoro uko igihe kigenda gihita . Nk'uko bigenda kuzamuka ku ngazi, ibi bimenyetso bigenda birushaho kwiyongera buhoro buhoro. Ntugahangayike, ibi bishobora kumvikana nk'ibigoye gato. Reka tuvuge kuri byose mu buryo busobanutse kandi bworoshye, sibyo?

PPMS ni iki mu by'ukuri?

Mu magambo make, `Multiple Sclerosis (MS)` ni indwara aho ubudahangarwa bw'umubiri bwacu, sisitemu iturinda indwara, yibasira mu buryo butari bwo sisitemu yacu y'imitsi (`système central nervous`) – ubwonko n'umugongo (imitsi iri mu mugongo). Ibi byangiza igipfundikizo cy'uburinzi (myelin) gikikije imitsi y'imitsi.

Ubu, hari ubwoko bwinshi bw'ingenzi bwa MS.

• Indwara yo gusubira inyuma mu maraso (RRMS): Abantu benshi bagira ubwo bwoko. Muri ubwo bwoko, ibimenyetso birushaho kwiyongera mu buryo butunguranye (tubyita 'relapse'), hanyuma nyuma y'igihe runaka, ibimenyetso birashira burundu cyangwa bigashira burundu.
• MS y'ibanze ikomeza kwiyongera (PPMS): Muri PPMS, ubwoko tuvuga muri iki gihe, nta "gusubira inyuma" kugaragara cyane nk'uko bigenda kuri RRMS. Ahubwo, ibimenyetso bigenda birushaho kwiyongera kuva mu ntangiriro. Hari igihe hashobora kubaho "ihindagurika" rito, bivuze ko ibimenyetso bigenda birushaho kwiyongera. Ariko muri rusange, iyo ndwara ikunda kwiyongera buhoro buhoro.
• MS Ikomeza Gutera Indwara (SPMS): Bamwe mu bantu barwaye RRMS bashobora gukuramo SPMS nyuma y'imyaka myinshi. Ibimenyetso byabo bigenda birushaho kwiyongera buhoro buhoro kandi gusubira inyuma bikaba bike.

PPMS na SPMS rimwe na rimwe byitwa 'Progressive MS' kuko byombi bifite imiterere ikomeza kwiyongera. Muri PPMS, hari urwego runaka rw'ububyimbirwe mu mitsi, kandi uturemangingo tw'imitsi turangirika buhoro buhoro tugatakaza imikorere yatwo. Ibi nibyo twita 'neurodegeneration'.

PPMS ikunze kugaragara gute?

Hari abantu babarirwa muri za miriyoni barwaye MS ku isi yose. Bivugwa ko muri Leta Zunze Ubumwe za Amerika honyine hari abantu bagera kuri miliyoni barwaye MS. Abagera kuri 10% muri bo, cyangwa umuntu umwe mu icumi, bafite ubwo bwoko bwa MS bwitwa PPMS. Rero, PPMS ntabwo ikunze kugaragara cyane ugereranyije n'ubundi bwoko bwa MS.

Ni ibihe bimenyetso bya PPMS? Bimera bite?

Ikintu nyamukuru kiranga PPMS ni uko ibimenyetso bya MS bigenda byiyongera buhoro buhoro.Ibi bimenyetso bishobora gutandukana bitewe n'umuntu ku wundi. Nanone, uburyo ibimenyetso bitangira n'umuvuduko wabyo biratandukanye bitewe n'umuntu ku wundi.

Dore bimwe mu bimenyetso bikunze kugaragara:

• Kugorwa no kugenda: Iki ni cyo kimenyetso cya mbere kigaragara ku barwayi benshi ba PPMS. Bashobora kugira amaguru adakomera, intege nke, no kubura uburinganire. Bashobora kandi kumva bananiwe vuba iyo bagenda.
• Kuryarya cyangwa kugira ibisebe mu bice bitandukanye by'umubiri: Ibi bishobora kubaho mu biganza, mu birenge, mu maso, cyangwa ahandi hantu hose ku mubiri.
• Guhinduka kw'amaso: Kubona nabi mu jisho rimwe, kubona kabiri, cyangwa kubabara iyo urimo kwimura amaso bishobora kubaho. Ariko, ibi bibazo byo kubona ntibikunze kugaragara muri PPMS nk'uko bimeze kuri RRMS.
• Kumva unaniwe igihe cyose (`umunaniro`): Uyu si umunaniro usanzwe. Ushobora kumva utari koroherwa uko waba uruhuka kose. Ibi bishobora kuba imbogamizi ikomeye ku mirimo yawe ya buri munsi.
• Kugorwa no kunyara no kwituma: Ibi bishobora kuba birimo gushaka kunyara mu buryo butunguranye (``ubushyuhe``), kugorwa no kugenzura konka (``kunanirwa kwituma``), no kugorwa no gukuramo ubusa mu ruhago rwose. Kurya impatwe nabyo birakunze kugaragara.
• Kumva nk'aho hari umuntu ugufashe neza mu gituza cyangwa mu nda: Hari n'abantu babyita 'MS hug'.
• Kumva amashanyarazi akubita mu mugongo, mu maboko, cyangwa mu maguru iyo ijosi rigose imbere: Ibi byitwa 'ikimenyetso cya Lhermitte'.
• Kugorana kw'imitsi (spasticness) cyangwa intege nke: Ibi bishobora gutuma bigorana kuyobora no kwimura amaguru n'amaboko yawe.
• Ibibazo byo kuvuga: Ushobora kumva amagambo yawe asa n'aho ahindagurika cyangwa umuvuduko w'amagambo yawe urimo uhinduka.
• Ibibazo byo kumira.
• Ibibazo byo gutekereza no kwibuka: Kumva ko ubwonko bwawe bufite igihu (`igihu cyo mu bwonko`), bivuze ko bigoye kwibuka ibintu, kwibanda ku kintu runaka no gufata ibyemezo.
• Ibibazo byo mu mutwe: Kwiheba , guhangayika no kurakara bishobora kubaho.

Igikuru ni uko ibi bimenyetso bishobora kutagaragara neza mu ntangiriro. Ushobora gutekereza uti “Oh, ni umunaniro gusa.” Ariko niba bigenda birushaho gukomera uko igihe kigenda gihita, ugomba kugira impungenge.

Kuki PPMS itera imbere? Ni iyihe mpamvu?

Abahanga mu bya siyansi ntibaramenya impamvu nyayo ya MS (harimo na PPMS), ariko hari ibintu byinshi bivugwa ko bishobora kuyitera:

1. Uburyo bwo kurwara indwara ya MS: Bitekerezwa ko impinduka zimwe na zimwe mu turemangingo twacu (DNA) zishobora gutuma tugira amahirwe menshi yo kurwara indwara zishingiye ku bushobozi bw'umubiri nka MS (indwara aho ubudahangarwa bw'umubiri bwibasira umubiri). Ariko, ibi ntibivuze ko niba ufite MS, abana bawe nabo bazayirwara. Ingaruka za MS ku turemangingo ntabwo ari nyinshi nkuko wabitekereza. Kubwibyo, ibyago byo kwanduza abana ni bike cyane.

2. Ibintu bifitanye isano n'ibidukikije: Ubushakashatsi bumwe bwerekana ko ibintu bimwe na bimwe mu bidukikije tubamo bishobora kugira uruhare mu iterambere rya MS. Urugero:

• Kwandura virusi : Hari indwara zimwe na zimwe za virusi, nka Virusi ya Epstein-Barr (EBV), nazo zirimo gukorwaho ubushakashatsi kugira ngo hamenyekane isano iri hagati ya MS n'ubwoko bumwe na bumwe bw'indwara.
• Kubura Vitamine D : Hari kandi n'imyizerere y'uko abantu bafite ingano nke ya Vitamine D ituruka ku zuba ry'izuba baba bafite ibyago byinshi byo kurwara indwara ya MS.
• Kunywa itabi: Abantu banywa itabi bafite ibyago byinshi byo kurwara indwara ya MS kandi bashobora kwiyongera vuba iyo ndwara.

3. Imikorere y'ubudahangarwa bw'umubiri: Mu buryo bumwe, ibi bintu bigize uturemangingo n'ibidukikije bihurira hamwe bigatera ikibazo mu budahangarwa bw'umubiri. Niyo mpamvu bitangira kwibasira uturemangingo tw'imitsi yacu.

Mu magambo make, PPMS si indwara iterwa n'impamvu imwe gusa. Iterwa n'ibintu byinshi bitandukanye.

Ni izihe ngorane zindi zishobora guterwa na PPMS?

Uko ibimenyetso bya PPMS bigenda bikura, hari n'ibindi bibazo n'ingorane bishobora kuvuka. Ingero zimwe na zimwe ni izi:

• Kurushaho gukomera kw'imitsi (spasticity): Ibi bishobora gutuma ububabare bwiyongera ndetse bikagorana no kugenda.
• Ingaruka zo gutakaza ubushobozi bwo kureba burundu (bidasanzwe).
• Kurushaho kugorana mu kurwanya uruhago rw'inkari: Ibi bishobora gutera indwara zikunze kugaragara mu nzira y'inkari.
• Ubushobozi bwo gukora imibonano mpuzabitsina bwiyongera.
• Kugabanuka kurushaho mu kwibuka no mu bushobozi bwo gutekereza.
• Ibibazo by'ubuzima bwo mu mutwe: Indwara nk'ihungabana n'imihangayiko bishobora kwiyongera.
• Guhora ugwa no gukomereka nk'imvune.
• Ibisebe by'umuvuduko biterwa no kumara igihe kinini mu buriri.
• Ingaruka zo kwandura indwara z'ubuhumekero: Cyane cyane iyo indwara ikomeye.

PPMS ipimwa ite? (Isuzuma)

Nta kizamini na kimwe gishobora gusuzuma PPMS burundu. Muganga wawe azasuzuma ibimenyetso byawe, amateka y'ubuzima bwawe, ikizamini cy'umubiri, n'ibindi bizamini byihariye, hanyuma agafata umwanzuro ko "ibi bishobora kuba ari PPMS."

Dore bimwe mu bizamini bikunze gukorwa kuri ibi:

1. MRI (Magnetic Resonance Imaging): Iki ni cyo kizamini nyamukuru gikoreshwa mu gusuzuma MS. Gishobora kureba ibyangiritse (ibisebe) mu bwonko no mu ruti rw'umugongo biterwa na MS. Muri PPMS, imiterere y'ibi bisebe n'uburyo bihinduka uko igihe kigenda ni ingenzi.

2. Gupfuka mu gifu (bizwi kandi nka Spinal Tap): Ibi bikubiyemo gufata urugero ruto rw'amazi yo mu bwonko (CSF) mu mugongo wawe wo hasi. Aya mazi asuzumwa kugira ngo harebwe niba hari impinduka zihariye kuri MS, nka poroteyine zitwa oligoclonal bands. Izi si MS zihariye, ariko zishobora kuba ikimenyetso cy'ububyimbirwe mu bwonko cyangwa mu ruti rw'umugongo.

3. Gupima amaraso: Ibi bifasha kwemeza ko nta zindi ndwara zitera ibimenyetso bisa na MS ufite.

4. Ubushakashatsi bw'Ibintu Bishobora Guterwa: Ubu bushakashatsi bupima umuvuduko w'amakuru y'amashanyarazi anyura mu mitsi. Iyo imitsi yangiritse kubera MS, umuvuduko w'amakuru unyuramo ushobora kugabanuka.

5. Optical Coherence Tomography (OCT): Iyi ni scan y'amaso idasaba ububabare ishobora gusuzuma niba hari ibyangiritse ku mitsi y'amaso na retina inyuma y'ijisho bitewe na MS.

Kugira ngo abaganga basuzume PPMS, batekereza ko ibimenyetso bigenda birushaho kwiyongera mu gihe cy'umwaka umwe nibura ndetse no kuba hari ibimenyetso bimwe na bimwe byihariye bigaragara kuri MRI scan .

Ubusanzwe PPMS ibaho ku kigero kingana iki?

Abantu benshi basuzumwa na PPMS bari mu kigero cy'imyaka 40 cyangwa 50. Iyi ni imyaka irenga gato ugereranije na RRMS. Ariko, ishobora kubaho mu myaka iyo ari yo yose, haba ku bantu bato cyangwa abakuze.

Ni ubuhe buryo bwo kuvura PPMS?

Hari intego ebyiri z'ingenzi mu kuvura PPMS:

1. Uburyo bwo kuvura indwara (DMTs): Ubu buryo bugerageza kugabanya umuvuduko indwara ikomeza kwiyongera.

2. Kurwanya ibimenyetso: Ibi bifasha kugabanya kubabara no kunoza ubuzima bwawe.

Uburyo bwo kuvura indwara (DMTs)

Hari ubwoko bwinshi bwa DMTs buboneka kuri RRMS, ariko hari umubare muto gusa wa DMTs zemewe kuri PPMS.

• Ocrelizumab (Ocrevus®):Uyu ni wo muti nyamukuru wa DMT wemewe kuri PPMS ubu. Ni umuti utangwa mu mitsi. Ubushakashatsi bwagaragaje ko uyu muti ushobora gufasha mu buryo runaka kugenzura kwiyongera kw'ibimenyetso ku barwayi ba PPMS.

Abaganga bemeza ko PPMS idakunze kwibasirwa n’indwara zo kubyimba kw’umubiri kurusha RRMS, ari nayo mpamvu DMTs zigamije kuyirwanya zidakora neza. Ariko, hari ubushakashatsi bwinshi buri gukorwa kuri MS, bityo hashobora kubaho ubundi buryo bwo kuvura PPMS mu gihe kiri imbere.

Kugenzura ibimenyetso

Iki ni igice cy'ingenzi cyane mu kuvura PPMS. Ubu buvuzi bugenwa n'ibimenyetso byawe byihariye.

• Ubuvuzi bw'umubiri: Ibi bishobora gufasha cyane ku bintu nko kugorwa no kugenda, kunanuka kw'imitsi, no gucika intege. Imyitozo ngororamubiri no kunanura imitsi bishobora gufasha kongera imbaraga, kuringaniza no kugenda neza.
• Ubuvuzi bw'akazi: Butanga uburyo n'ibikoresho bifasha abantu gukora imirimo ya buri munsi (urugero: kwambara, kurya, kwandika) ku giti cyabo.
• Umuti:
• Imiti ivura imitsi igoramye (spasticity).
• Umuti uvura umunaniro.
• Umuti uvura ibibazo by'uruhago.
• Imiti igabanya ububabare.
• Umuti wo kuvura ihungabana cyangwa guhangayika.
• Ubuvuzi bwo kuvuga: Niba ufite ikibazo cyo kuvuga cyangwa kumira.
• Ibikoresho byo Gufasha mu Kwenda: Ushobora gukenera ibintu nk'inkoni, akagare k'abagenda n'amaguru, cyangwa amagare y'abamugaye.

Muganga wawe azagusobanurira ingaruka mbi zishobora guterwa n'imiti cyangwa uburyo ubwo aribwo bwose bwo kuyivura mbere yuko uyitangira, bityo ntutinye kubaza ikibazo icyo ari cyo cyose ufite.

Ese hari uburyo bwo kwirinda PPMS?

Ikibabaje ni uko nta buryo bwo kwirinda MS (harimo na PPMS) buhari kuko impamvu nyayo itaramenyekana.

Ariko, niba ufite MS, hari ibintu bimwe na bimwe ushobora gukora kugira ngo ugabanye umubare w'indwara zifata imyanya ndangagitsina (`relapses` - nubwo ibi bidakunze kubaho muri PPMS) no kugenzura umuvuduko w'indwara irushaho kwiyongera:

• Gufata imiti yandikiwe na muganga (cyane cyane DMTs) nk'uko muganga yabigutegetse.
• Gukurikiza ubuzima bwiza (kurya neza, gusinzira neza, gukora imyitozo ngororamubiri).
• Kureka kunywa itabi burundu.
• Kugerageza kugabanya stress uko bishoboka kose.

Ni ibihe bintu umuntu urwaye PPMS ashobora guhura na byo?

PPMS ni indwara idakira ishobora kugira ingaruka zikomeye ku buzima bwawe bwa buri munsi. Uko ibimenyetso birushaho kwiyongera, ushobora gukenera guhindura imibereho yawe kugira ngo wirinde kandi wirinde impanuka.

Tekereza, niba ufite ingorane zo kwigendera wenyine, ugomba kuvugana na muganga wawe ku byerekeye igikoresho cyo kugenda nk'ikigare cy'abamugaye. Ibintu nk'ibi bishobora kugorana kubyakira mu ntangiriro. Ariko,Ibi bikoresho bizagufasha gukora witonze kandi bigufashe gukomeza ubuzima bwawe.

Uretse ingaruka z'umubiri za PPMS, kubana n'iyi ndwara idakira bishobora no kugira ingaruka zikomeye ku buzima bwawe bwo mu mutwe. Ni ibisanzwe kugira agahinda, uburakari, kwiheba no kwigunga. Hari abantu babona ihumure rikomeye mu kuganira n'inzobere mu by'ubuzima bwo mu mutwe , nk'umujyanama cyangwa inzobere mu by'indwara zo mu mutwe. Niba rero wumva ukeneye ubufasha, ntutindiganye gusaba ubufasha.

Wibuke ko nta muti uhari wa PPMS. Ariko, ubushakashatsi burakomeje kugira ngo umenye byinshi kuri yo no gushaka uburyo bushya bwo kuvura bushobora kugufasha. Ntugacike intege.

Ni gute ibimenyetso bya PPMS birushaho kwiyongera vuba?

Iki ni ikibazo abantu benshi bibaza. Ariko, abantu bose bafite PPMS bahura nacyo mu buryo butandukanye. Kuri bamwe, ibimenyetso bishobora kwiyongera buhoro buhoro, uko imyaka igenda ihita. Ku bandi, ibimenyetso bishobora kwiyongera vuba.

Ibi biragoye kubiteganya neza. Niba ubonye impinduka zigaragara mu bimenyetso byawe, cyangwa niba birushaho kwiyongera vuba, banza uganire na muganga wawe ku kibazo cyawe.

Icyizere cy'ubuzima cy'umuntu ufite PPMS ni ikihe?

Ibi kandi ni ikintu abantu benshi batinya. Ariko, PPMS ntabwo igira ingaruka ku buryo butaziguye ku buzima bwawe. Ni ukuvuga ko kugira PPMS bitavuze ko igihe umuntu azakomeza kubaho ari gito ugereranyije n'icy'abandi.

Ariko, ingorane zikomeye ziterwa n'iyi ndwara (urugero: kwandura indwara zikomeye, ibibazo biterwa no kuryama igihe kirekire ku buriri) zishobora kugira ingaruka mbi ku buzima iyo zidafashwe neza. Kubwibyo, ni ngombwa cyane gukurikiza inama za muganga no kwita ku buzima bwawe.

Ni ryari ngomba kujya kwa muganga?

Niba ufite PPMS, ni ngombwa ko wisuzumisha kwa muganga buri gihe. Byongeye kandi, gana muganga niba:

• Niba ibimenyetso byawe bya PPMS birushaho kwiyongera kandi bigira ingaruka ku buzima bwawe bwa buri munsi.
• Iyo habayeho ikibazo gikomeye nko gucika intege.
• Niba ufite ububabare budashira cyangwa ibinure mu maguru yawe, cyangwa niba bikomeje kwiyongera.
• Kubera ko PPMS ishobora kugira ingaruka ku buringanire bwawe n'imikorere y'umubiri wawe, niba uguye ukababara, hita ubonana na muganga cyangwa uhamagare inzego z'ubutabazi bwihutirwa.
• Niba umuti urimo gufata utera ingaruka mbi .
• Niba wumva urwaye mu mutwe (nk'ihungabana, guhangayika).

Ni ibihe bibazo ngomba kubaza muganga?

Iyo ugiye kwa muganga, ni byiza kwandika ibibazo ufite. Dore ingero zimwe na zimwe:

• Ese mfite PPMS, cyangwa ubundi bwoko bwa MS? Namenya nte neza?
• Ni gute nakwitwara mu bihe by'ibimenyetso byanjye? Ni ibihe bintu byihariye nakora?
• Ese wansaba ubuvuzi bw'umubiri cyangwa ubuvuzi bw'akazi? Ni hehe nabona izo serivisi?
• Ni iyihe miti munsaba? Ingaruka mbi zayo ni izihe? Nkwiye kuyifata igihe kingana iki?
• Ese nkeneye gukoresha intebe y'abamugaye cyangwa ikindi gikoresho cyo kugenda? Niba ari byo, bizamara igihe kingana iki?
• Ese ngomba guhindura indyo yanjye?
• Ni iki nkwiye gukora kugira ngo nite ku buzima bwanjye bwo mu mutwe?

Ubutumwa bwa nyuma bwo kujyana mu rugo

PPMS, kimwe n'ubundi bwoko bwa Multiple Sclerosis, ni indwara ishobora kugira ingaruka zikomeye ku buzima bwawe. Ibyo ni ukuri. Ariko ntugahangayike, nturi wenyine.

Wibuke ko hari uburyo bwo kuvura n'uburyo bushobora kugufasha kugabanya ikwirakwira ry'ibimenyetso byawe no kunoza ubuzima bwawe.

Mu ntangiriro, ushobora kutabona ibimenyetso byinshi, ariko uko igihe kigenda, bishobora kwiyongera. Ushobora no gukenera gukoresha ibikoresho nk'ikimuga cy'abamugaye kugira ngo bigufashe kwigendera wenyine. Si iherezo ry'isi. Muganga wawe, umuganga w'umubiri, n'abandi batanga serivisi z'ubuvuzi bashobora kugufasha muri urwo rugendo. Bashobora kugufasha gucunga ibimenyetso byawe no kukuyobora kubaho ubuzima bwiza kandi bukora neza uko bishoboka kose.

Rero, komeza kugira icyizere. Shaka amakuru. Baza ibibazo. Shaka ubufasha ukeneye. Vugana n'umuryango wawe n'inshuti kuri ibi. Inkunga yabo nayo izagukomeza cyane.