Amaraso atemba mu mitsi yacu ameze nk'uruzi rutanga ubuzima, si byo se? Uturemangingo dutukura turi muri aya maraso dutwara umwuka wa ogisijeni ukenewe na buri turemangingo mu mubiri wacu. Noneho tekereza uko byagenda iyo utwo turemangingo dutukura tw’ingenzi cyane twangirika mu buryo butunguranye tugasenyuka nta mpamvu igaragara? Mu by’ukuri biteye ubwoba gato. Uyu munsi tugiye kuvuga ku ndwara idakunze kugaragara, ariko ikomeye cyane, y’amaraso twese tugomba kumenya. Iyi yitwa Paroxysmal Nocturnal Hemoglobinuria, cyangwa
PNH mu magambo ahinnye.
Mu magambo make, PNH ni iki?
PNH ni indwara idakunze kugaragara mu maraso. Muri iki gihe
, uturemangingo dutukura mu maraso yacu turangirika nta mpamvu. Mu by'ukuri, uturemangingo twacu
tw’umubiri dutera uturemangingo dutukura. Ibi biterwa nuko uturemangingo dutukura tw’abantu bafite iyi ndwara tubura ubwoko bwihariye bwa poroteyine ibarinda. Kubwibyo, uturemangingo tw’umubiri wacu ntidushobora kubimenya nk' 'uturemangingo twacu bwite'. Iyo uturemangingo dutukura twangijwe vuba muri ubu buryo, umworera wacu ntushobora gukora uturemangingo dushya dutukura ku muvuduko umwe. Hanyuma amaraso mu mubiri aragabanuka. Iyi ndwara twita
anemia . Nanone, ikindi kintu kibi cy’iyi ndwara ni
uko yongera ibyago byo kubyimba kw’amaraso mu mitsi. Indwara ya PNH ntigira ingaruka kuri bose kimwe. Hari abantu bafite ibimenyetso byoroheje cyane. Bashobora kubaho ubuzima busanzwe. Ariko kuri bamwe, iyi ndwara ishobora kuba ikomeye kurushaho. Bashobora gukenera gukomeza gufata imiti no guterwa amaraso.
Ni iki gitera indwara ya PNH?
Igikuru hano ni uko PNH
atari indwara yavukanye. Ibyo bivuze ko idakwirakwira kuva ku mubyeyi ijya ku mwana. Kandi si indwara yandura. Mu by'ukuri ni indwara idakunze kugaragara. Tekereza, mu gihugu nka Amerika, iyo abarwayi bashya ba kanseri bagera kuri miliyoni 1.8 basanzwe bapimwa buri mwaka, abarwayi ba PNH bagera kuri 400 kugeza kuri 500 ni bo bonyine bapimwa. Iyi ndwara iterwa n'impinduka mu ngirabuzimafatizo yitwa 'PIGA' mu turemangingo tw'igufwa mu musemburo wacu w'amagufwa. Muri make, hari ikosa rito mu 'mabwiriza' yakirwa n'umusemburo w'amagufwa, ari na wo ruganda rukora uturemangingo tw'amaraso dutukura. Kubera iri kosa, uturemangingo tw'amaraso dutukura turimo gukorwa ntitubona ubwo burwayi bwa poroteyine burinda indwara.
Abaganga ntibarabasha kumenya neza impamvu iyi gene ya 'PIGA' ihinduka mu buryo butunguranye, cyangwa impamvu bamwe gusa ari bo bakuramo uturemangingo dutukura tudasanzwe.
Ese nawe ufite ibi bimenyetso?
Iyo uturemangingo dutukura tw’amaraso twangiritse, ibara ritukura ryitwa hemoglobin riri muri two risohoka mu maraso. Iyi myanda ivanwa mu mubiri inyuze mu mpyiko ziri mu nkari. Kubwibyo, ibara ry’inkari rishobora kugaragara
nk’umutuku, umukara, cyangwa umukara kurusha uko bisanzwe . Ariko, si abantu bose barwaye PNH bafite ibara ry’inkari ritandukanye. Kimwe cya kabiri cy’abarwayi ni cyo kigaragaramo iki kimenyetso. Kandi ni umwijima cyane cyane mu nkari zisohoka nijoro cyangwa iyo babyutse bwa mbere mu gitondo. Uretse iki kimenyetso nyamukuru, hashobora kubaho ibindi bimenyetso byinshi. Reka turebe ibyo ari byo.
| Ibimenyetso | Ibisobanuro byoroshye |
|---|
| Umunaniro uhoraho | Kubera ko hari uturemangingo dutukura dutwara umwuka wa ogisijeni mu mubiri ari duke, wumva unaniwe cyane nubwo wakora akazi gato. Umubiri wawe wumva nta buzima ufite. |
| Guhumeka nabi | Ugira isereri iyo ugenda gato cyangwa uzamuka ingazi. Impamvu ni uko umubiri wawe utabona umwuka wa ogisijeni ukeneye. |
| Gukomereka no kuva amaraso byoroshye | Uduheri tw'ubururu gusa tugaragara ku mubiri. Ndetse n'igisebe gito bifata igihe kugira ngo amaraso ahagarike. |
| Kuribwa umutwe kenshi | Kuribwa umutwe bishobora guterwa, cyane cyane bitewe n'impinduka mu maraso. |
| Kubyimba kw'amaraso (Trombose) | Iyi ni yo ngorane iteje akaga cyane. Amaraso ashobora kubumba mu mitsi y'amaguru, mu gifu, cyangwa mu bwonko. |
| Utudomo dutukura munsi y'uruhu | Utudomo duto dutukura tugaragara ku ruhu dushobora guterwa n'utudomo duto duto two kuva amaraso munsi y'uruhu. |
| Imibonano mpuzabitsina idakora neza ku bagabo | Mu bihe bikomeye by’iyi ndwara, abagabo bashobora kugorwa no gusohora bitewe n’ingaruka bigira ku mitemberere y’amaraso. |
Ni nde ufite amahirwe menshi yo kurwara iyi ndwara?
Nk’uko abaganga babivuga, ibyago byo kurwara PNH biri hejuru gato kuri bamwe.
- Ku bafite umwongo w'amagufwa udakomeye: Iyo ku mpamvu runaka imikorere y'umuyongo w'amagufwa igabanutse.
- Ku bafite indwara yitwa Aplastic Anemia : Iyi nayo ni indwara yibasira umwongo w'amagufwa. Abantu bafite iyi ndwara baba bafite ibyago byo kurwara PNH nyuma.
- Ku bantu bakomoka muri Aziya: Iyi ndwara ikunze kugaragara cyane mu Banyaziya kurusha mu yandi moko.
PNH ikunze kugaragara mu
bantu bakuru bari mu kigero cy'imyaka 30 , ariko ishobora no kugaragara mu bakiri bato, harimo abana bato n'impinja.
Ni gute wasuzuma indwara?
Kubera ko PNH ari indwara idakunze kugaragara kandi ibimenyetso
byayo bisa n'iby'izindi ndwara, rimwe na rimwe bishobora gufata igihe kugira ngo imenye indwara. Cyane cyane ku muntu ufite ibara ry'inkari ridahinduka, iyo muganga atabikekaga, isuzuma rishobora gutinda. Kugira ngo imenye indwara, muganga wawe abanza kukubaza ibimenyetso byawe n'amateka yawe y'uburwayi. Hanyuma, azagutegeka gupima amaraso atandukanye. Muri ibi,
ikizamini cyiza kandi cy'ukuri cyo kwemeza PNH ni ikizamini cyihariye cy'amaraso cyitwa `Flow Cytometry`. Iki kizamini gishobora gupima neza umubare w'uturemangingo dutukura tw'amaraso tubura iyo poroteyine irinda mu maraso yawe.
Ni ubuhe buryo bwo kuvura PNH?
Ku bw'amahirwe, ubu hari uburyo bwinshi bwiza bwo kuvura PNH. Muganga wawe azasuzuma indwara yawe maze amenye uburyo bwiza bwo kuvura.
- Imiti igabanya ubudahangarwa bw'umubiri: Imiti nka eculizumab (Soliris) na ravulizumab ( Ultomiris ) ikora mu guhagarika ubudahangarwa bw'umubiri bwacu kwangiza uturemangingo dutukura tw'amaraso. Ibi kandi bigabanya ibyago byo kubyimba kw'amaraso.
- Steroids: Izi rimwe na rimwe zikoreshwa mu kugenzura isenyuka ry'uturemangingo dutukura tw'amaraso.
- Igabanya amaraso:Ibi bitangwa kugira ngo bigabanye ibyago byo kubyimba kw'amaraso.
- Guterwa amaraso: Iyo amaraso y'umubiri ari make cyane, amaraso atangwa hanze kugira ngo umubare w'uturemangingo dutukura twongere.
Byongeye kandi, hari uburyo bwo kuvura bufasha umubiri gukora uturemangingo twinshi tw’amaraso dutukura imbere.
- Vitamine nka aside folike
- Ikintu gitera gukura kw'umuntu
- Androgen, imisemburo y'abagabo
Gutera umwongo w'amagufwa bishobora gukiza burundu PNH. Ariko, kubera ko ari ukubaga guteye akaga kandi bigoye, abaganga babikora gusa iyo ubundi buryo bwose bwo kuvura bwananiwe.
Ubutumwa bwo kujyana mu rugo
- PNH si indwara ivukanwa cyangwa yandura. Ni indwara idakunze kugaragara mu maraso iterwa n'impinduka mu ngirabuzimafatizo mu musemburo w'amagufwa.
- Ibimenyetso by'ingenzi ni inkari zijimye ziterwa no kwangirika kw'uturemangingo dutukura tw'amaraso, umunaniro ukabije, guhumeka nabi , ndetse n'ibyago byo kubyimba kw'amaraso.
- Niba ukomeje kugira ibi bimenyetso, ntugatinye kandi ushake umuganga wujuje ibisabwa vuba bishoboka. Cyane cyane bwira umuganga wawe ibi.
- Iyi ndwara ishobora gupimwa neza hakoreshejwe uburyo bwihariye bwo gupima amaraso bwitwa
Flow Cytometry . - Ubu hariho uburyo bwiza cyane bwo kuvura iyi ndwara no gukumira ingorane, bityo ni ngombwa cyane gukurikiza inama z’abaganga.
PNH Sinhala, Paroxysmal nocturnal hemoglobinuria, indwara z'amaraso, kwangirika kw'uturemangingo dutukura tw'amaraso, inkari z'umukara, indwara z'umusemburo w'amagufwa, kubura amaraso
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