Polycythemia Vera ni iki? Ibimenyetso, Impamvu, n’Ubuvuzi

Polycythemia vera ni indwara y’amaraso idakunze kugaragara, aho umugongo w’ugufi (bone marrow) ukora utubuto tw’amaraso atukura menshi. Ibi biterwa n’impinduka mu mbaraga z’umubiri (gene) zibwira umubiri wawe gukomeza gukora utubuto tw’amaraso atukura nubwo utabikeneye. Tekereza nk’uruganda rudashobora guhagarika umusaruro warwo, rukora ibintu byinshi kurusha ibyo bikenewe.

Nubwo iyi ndwara isa n’iteye impungenge, abantu benshi babaho ubuzima buzira umuze kandi buhamye, bafashwe neza. Ikintu nyamukuru ni ukumva ibiri kuba mu mubiri wawe no gukorana n’abaganga bawe kugira ngo byose bigende neza.

Polycythemia vera ni iki?

Polycythemia vera ni ubwoko bwa kanseri y’amaraso yitwa myeloproliferative neoplasm. Umugongo w’ugufi (bone marrow), usa n’uruganda rw’amaraso mu mubiri wawe, utangira gukora utubuto tw’amaraso atukura menshi kubera impinduka mu mbaraga z’umubiri (mutation). Iyi mpinduka ikora nk’igikoresho cyangiritse gikomeza kuba mu mwanya wa ‘gutangira’.

Utubuto tw’amaraso atukura twiyongereye bituma amaraso yawe aba maremare kurusha uko asanzwe, kimwe n’uburyo ubuki butemba buhoro kurusha amazi. Ubu buremere bushobora gutuma amaraso atemba neza mu mitsi y’amaraso. Abantu benshi bafite iyi ndwara bagira kandi utubuto tw’amaraso yera n’utubuto duto tw’amaraso (platelets) menshi.

Ibi ntabwo ari ikintu wakoze nabi cyangwa wari wakwirinda. Impinduka mu mbaraga z’umubiri iba ku bushake mu bihe byinshi, kandi ntabwo ari ikintu ukomora ku babyeyi bawe cyangwa uha abana bawe.

Ibimenyetso bya polycythemia vera ni ibihe?

Abantu benshi bafite polycythemia vera ntibabona ibimenyetso byayo mu ntangiriro, niyo mpamvu iyi ndwara ikunze kuvumburwa mu bipimo bisanzwe by’amaraso. Iyo ibimenyetso bigaragaye, akenshi biba bifitanye isano no kugira utubuto tw’amaraso atukura menshi n’amaraso maremare.

Dore ibimenyetso bisanzwe ushobora kugira:

• Kumva unaniwe cyangwa udakomeye, na nyuma yo gusinzira bihagije
• Uburwayi bw’umutwe butunguranye
• Kuzenguruka cyangwa kumva utari ukomeye
• Kuryaryata kw’uruhu, cyane cyane nyuma yo koga mu mazi ashyushye
• Kumva umubiri wuzuye cyangwa utuje mu gice cy’ibumoso cy’inda
• Guhumeka nabi mu gihe ukora ibikorwa bisanzwe
• Ibibazo by’ububone cyangwa kubona ibintu bito
• Urubura mu maso, mu ntoki, cyangwa mu birenge

Bamwe mu bantu bagira kandi ibimenyetso bidafite akamaro ariko bikomeye. Ibi bishobora kuba harimo kuva amaraso cyangwa kwishima kw’amaraso, gushyuha mu ntoki no mu birenge, cyangwa gucana ibyuya cyane nijoro. Ushobora kandi kubona ko ibikomere bito bitemba amaraso igihe kirekire kurusha igihe cyasanzwe cyangwa ko wimaza byoroshye kurusha mbere.

Kuryaryata bikwiye kwitabwaho by’umwihariko kuko ari ikimenyetso cyihariye cy’iyi ndwara. Akenshi yumvikana nk’utudutswe duto two mu ruhu kandi bikomeza kuba bibi iyo ukoresheje amazi ashyushye. Ibi biterwa n’uko utubuto tw’amaraso twiyongereye dusohora ibintu byangiza uruhu.

Impamvu za polycythemia vera ni izihe?

Polycythemia vera iterwa n’impinduka mu mbaraga z’umubiri (mutation) yitwa JAK2 V617F mu bipimo bigera kuri 95%. Iyi mpinduka iba mu tubuto tw’umugongo w’ugufi (bone marrow) kandi ibibwira gukora utubuto tw’amaraso atukura buri gihe, nubwo umubiri wawe ufite bihagije. Ni nk’ugira thermostat ihagaze kandi idasubiza ubushyuhe nyabwo.

Iyi mpinduka mu mbaraga z’umubiri ntabwo ari ikintu wavukanye mu bihe byinshi. Ahubwo, itera mu buzima bwawe, akenshi hagati y’imyaka 50 na 60. Abahanga mu bya siyansi ntibasobanukiwe neza impamvu iyi mpinduka iba, ariko isa n’iba ku bushake.

Abantu basigaye 5% bafite polycythemia vera bagira impinduka zitandukanye, nko guhinduka mu mbaraga z’umubiri za CALR cyangwa MPL. Ibi na byo bigira ingaruka ku buryo umugongo w’ugufi ukora utubuto tw’amaraso, ariko ni bike cyane.

Ni ngombwa kumenya ko iyi ndwara idanduza, kandi nta kintu wakoze ngo uyitere. Ibintu byo mu kirere, imibereho, cyangwa umunaniro ntibitera polycythemia vera. Impinduka mu mbaraga z’umubiri iba gusa nk’imwe mu mpinduka z’uturemangingo zishobora kubaho uko dukera.

Ni ryari ukwiye kujya kwa muganga kubera polycythemia vera?

Ukwiye kuvugana na muganga wawe niba ufite ibimenyetso biramba bidakemuka. Ibi ni ngombwa cyane niba ufite ibimenyetso byinshi hamwe, nko kunanirwa gukomeza guhuza n’uburwayi bw’umutwe n’ururyaryata rw’uruhu.

Witondere ibimenyetso bibangamira ubuzima bwawe bwa buri munsi cyangwa bigaragara ko bikomeza kuba bibi uko iminsi igenda. Niba unaniwe cyane ibyumweru byinshi, ufite uburwayi bw’umutwe buhoraho, cyangwa ukabona ko uruhu rwawe ruryaryata cyane nyuma yo koga mu mazi ashyushye, ibi bikwiye kuvugana na muganga wawe.

Shaka ubufasha bwa muganga vuba niba ufite ububabare mu kifuba, guhumeka nabi cyane, uburwayi bw’umutwe bukomeye cyangwa ibimenyetso by’amaraso afunze nk’ububabare butunguranye mu kirenge no kubyimba. Ibi bishobora kugaragaza ingaruka zikomeye zisaba ubuvuzi bwihuse.

Ntugatege amatwi niba ufite impinduka mu kubona, guhuzagurika, cyangwa ibimenyetso by’indwara yo mu bwonko nk’ubudakomeye butunguranye ku ruhande rumwe rw’umubiri. Nubwo ibi bidafite akamaro, amaraso maremare muri polycythemia vera ashobora rimwe na rimwe gutera ibibazo byo gutwara amaraso bisaba ubuvuzi bwihuse.

Ibyago bya polycythemia vera ni ibihe?

Kumenya abantu bafite amahirwe yo kurwara polycythemia vera bishobora kugufasha gusobanukirwa neza uko uhagaze. Ariko, ibuka ko kugira ibyago ntibisobanura ko uzahita urwara iyo ndwara, kandi kutabigira ntibibuza ko utazarwara.

Ibyago nyamukuru birimo:

• Kuba ufite imyaka irenga 60, nubwo bishobora kubaho no mu bantu bakiri bato
• Kuba umugabo, kuko abagabo bafite amahirwe menshi yo kuyirwara
• Kuba ufite inkomoko y’Abayahudi, cyane cyane Abayahudi ba Ashkenazi
• Kuba warahuraga n’imirasire myinshi

Imyaka ni yo kintu gikomeye cyane gitera iyi ndwara, abantu benshi barayirwara hagati y’imyaka 50 na 75. Iyi ndwara ni nke cyane mu bantu bari munsi y’imyaka 40, nubwo ishobora kubaho rimwe na rimwe mu bantu bakiri bato ndetse, gake cyane, mu bana.

Ibyago byiyongereye gato mu bantu b’Abayahudi bisa n’bifitanye isano n’imbaraga z’umubiri, ariko iyi ndwara ishobora kwibasira abantu b’amoko yose. Isano n’imirasire iterwa n’ubushakashatsi ku bantu bahuye n’ibisasu bya atomiki cyangwa impanuka za kirimbuzi, ariko ama rayons X asanzwe cyangwa CT scans ntiyongera ibyago byawe.

Ikintu cy’ingenzi ni uko abantu benshi bafite ibi byago ntibabona polycythemia vera. Iyi ndwara igumana ubuke, ikaba iboneka ku bantu babiri kuri buri bantu 100.000.

Ingaruka zishoboka za polycythemia vera ni izihe?

Nubwo polycythemia vera ishobora kuvurwa neza, ni ngombwa kumenya ingaruka zishoboka kugira ngo ukorane na muganga wawe kugira ngo uzirinde. Amaraso maremare n’utubuto tw’amaraso twiyongereye bishobora rimwe na rimwe gutera ibibazo byo gutwara amaraso no gufunga amaraso.

Ingaruka zisanzwe harimo:

• Amaraso afunze mu mitsi y’amaraso
• Gukama kw’umutima cyangwa indwara yo mu bwonko
• Kubyimba kw’uruhago
• Ibibazo byo kuva amaraso, nubwo ufite utubuto tw’amaraso menshi
• Umuvuduko w’amaraso ukabije
• Amabuye mu mpyiko
• Gout kubera kuzamuka kw’ibintu byitwa uric acid

Amaraso afunze ni ikibazo gikomeye kuko amaraso maremare atemba neza mu mitsi y’amaraso. Aya maraso ashobora gufunga mu birenge, mu bihaha, cyangwa mu zindi ngingo z’ingenzi. Niyo mpamvu muganga wawe ashobora kugutegeka kuvura kugira ngo amaraso yawe atange kandi kugabanya umubare w’utubuto tw’amaraso atukura.

Icyitonderwa, bamwe mu bantu bafite polycythemia vera bagira kandi ibibazo byo kuva amaraso. Ibi bisa n’ibidasanzwe, ariko bibaho kuko utubuto duto tw’amaraso (platelets) ntidukora neza igihe cyose. Ushobora kubona ko wimaza byoroshye cyangwa ko ibikomere bito bitemba amaraso igihe kirekire kurusha igihe cyasanzwe.

Mu bihe bidafite akamaro, polycythemia vera ishobora guhinduka indwara zikomeye z’amaraso nka myelofibrosis cyangwa leukemia ikabije. Ibi bibaho mu bipimo bigera kuri 20% kandi bisaba imyaka myinshi. Gukurikirana buri gihe bifasha muganga wawe kubona impinduka zose hakiri kare.

Polycythemia vera imenyekanwa gute?

Kumenya polycythemia vera bitangira hakoreshejwe ibizamini by’amaraso bigaragaza ko ufite utubuto tw’amaraso atukura menshi. Muganga wawe azareba hematocrit (igipimo cy’utubuto tw’amaraso atukura mu maraso yawe) n’ibipimo bya hemoglobin. Muri polycythemia vera, ibi bipimo biri hejuru y’ibisanzwe.

Ikizamini nyamukuru cyo kumenya iyi ndwara kireba impinduka mu mbaraga z’umubiri za JAK2 mu tubuto tw’amaraso yawe. Kubera ko abantu bagera kuri 95% bafite polycythemia vera bafite iyi mpinduka mu mbaraga z’umubiri, kuyibona bifasha kwemeza uburwayi. Niba ikizamini cya JAK2 ari kibi, muganga wawe ashobora gupima izindi mpinduka nka CALR cyangwa MPL.

Muganga wawe azashaka kandi gukuraho izindi mpamvu z’utubuto tw’amaraso atukura menshi. Ibi bishobora kuba harimo ibizamini byo kugenzura ibipimo bya ogisijeni, imikorere y’impyiko, n’izindi ndwara zishobora gutuma umubiri wawe ukora utubuto tw’amaraso atukura twiyongereye. Rimwe na rimwe ibi bisaba ibizamini by’amaraso byiyongereye cyangwa ibizamini byo kubona amashusho.

Gupima umugongo w’ugufi (bone marrow biopsy) bishobora gusabwa mu bihe bimwe na bimwe, cyane cyane niba muganga wawe akeneye amakuru yiyongereye ku byo biba mu mugongo w’ugufi. Nubwo ibi bisa n’ibiteye ubwoba, akenshi bikorwa nk’ubuvuzi bw’inyuma (outpatient procedure) hakoreshejwe imiti ibitera uburibwe buke kandi bitanga amakuru y’ingenzi yo gutegura ubuvuzi bwawe.

Ubuvuzi bwa polycythemia vera ni buhe?

Ubuvuzi bwa polycythemia vera bugamije kugabanya umubare w’utubuto tw’amaraso atukura no gukumira ingaruka. Inkuru nziza ni uko, hakoreshejwe ubuvuzi bukwiye, abantu benshi bafite iyi ndwara bashobora kubaho ubuzima busanzwe, buhamye. Gahunda yawe y’ubuvuzi izahuzwa n’uko uhagaze, imyaka yawe, n’ibyago byawe.

Uburyo nyamukuru bw’ubuvuzi harimo:

• Phlebotomy (gukuraho amaraso buri gihe, nk’uko utanga amaraso)
• Aspirin ya dose nke kugira ngo igabanye ibyago byo gufunga amaraso
• Imiti igabanya umusaruro w’utubuto tw’amaraso
• Ubuvuzi bw’ibimenyetso nko kuryaryata

Phlebotomy akenshi ni ubuvuzi bwa mbere muganga wawe azakugira inama. Ibi bisobanura gukuraho litiro imwe y’amaraso buri cyumweru cyangwa amezi make, kimwe no gutanga amaraso. Ni uburyo bworoshye, butagira ingaruka, bugabanya umubare w’utubuto tw’amaraso atukura mu mubiri wawe kandi bugatuma amaraso yawe atanga.

Aspirin ya dose nke ikunze kwandikwa kuko ifasha gukumira amaraso afunze bituma utubuto duto tw’amaraso (platelets) tudakomeye. Muganga wawe azamenya niba ari byiza kuri wewe hashingiwe ku byago byo kuva amaraso n’izindi ndwara.

Niba phlebotomy yonyine idahagije, muganga wawe ashobora kwandika imiti nka hydroxyurea cyangwa interferon. Aya miti afasha kugabanya umusaruro w’utubuto tw’amaraso mu mugongo w’ugufi. Imiti mishya nka ruxolitinib ishobora gusabwa niba izindi miti zitakora neza cyangwa niba ufite ibimenyetso bikomeye.

Uko wakwitwara murugo ufite polycythemia vera

Kwitwara murugo ufite polycythemia vera bisobanura guhindura imibereho bishobora kugufasha kumva neza no kugabanya ibyago byo kugira ingaruka. Ibi bihinduka bikorana n’ubuvuzi bwawe kugira ngo ugire ibyiza byinshi.

Kunywa amazi ahagije ni ingenzi kuko bifasha amaraso yawe kudaba maremare cyane. Gerageza kunywa amazi nibura 8 buri munsi, kandi unywe menshi niba uri gukora cyangwa uri mu kirere gishyushye. Irinde gukama kubera kunywa inzoga cyangwa ikawa nyinshi.

Imikino ngororamubiri isanzwe, ifatika ishobora kugufasha kunoza imitsi yawe n’ubuzima bwawe muri rusange. Kugenda, koga, cyangwa yoga ni amahitamo meza. Ariko, irinde ibikorwa bifite ibyago byinshi byo gukomereka kuko ushobora kuva amaraso byoroshye. Buri gihe banza ubaze muganga wawe mbere yo gutangira gahunda nshya y’imikino ngororamubiri.

Witondere uruhu rwawe, cyane cyane kuryaryata bisanzwe muri iyi ndwara. Koga mu mazi adashyushye cyane kurusha ashyushye bishobora kugabanya kuryaryata. Bamwe mu bantu basanga gukoresha amavuta yo kwisiga mu gihe uruhu rwabo rugitakaza amazi bifasha, kandi kwirinda amasabune akomeye bishobora kugira akamaro.

Komeza ukureho ibimenyetso byawe n’impinduka zose ubona. Aya makuru afasha itsinda ryawe ry’abaganga guhindura ubuvuzi bwawe uko bikenewe. Ntuzuyaze kuvugana na muganga wawe niba ubona ibimenyetso bishya cyangwa niba ibyariho bikomeza kuba bibi.

Uko wakwitegura gusura muganga wawe

Kwitwara neza mbere yo gusura muganga wawe bifasha kwemeza ko ukoresha neza igihe cyawe hamwe na we. Kuza uteguye ibibazo n’amakuru bituma uruzinduko rurangira neza kandi bifasha muganga wawe gutanga ubuvuzi bwiza.

Mbere yo gusura muganga wawe, andika ibimenyetso byawe byose, nubwo bisa n’ibidafite aho bihuriye. Vuga igihe byatangiye, uko kenshi biba, n’icyo kibitera cyangwa kibikiza. Ibi biha muganga wawe ishusho yuzuye y’uko wumva.

Zana urutonde rwuzuye rw’imiti yose ukoresha, harimo imiti igurwa mu maduka, amavitamini, n’ibindi. Imiti imwe ishobora kugira ingaruka ku bipimo by’amaraso yawe cyangwa ikagira ingaruka ku miti yo kuvura polycythemia vera, bityo aya makuru ni ingenzi.

Tegura ibibazo ku ndwara yawe n’uburyo bwo kuyivura. Ushobora kwibaza icyo ugomba kwitega, uko ubuvuzi buzagira ingaruka ku buzima bwawe bwa buri munsi, cyangwa ibimenyetso bisaba ubufasha bwihuse. Kubyandika bizatuma utabyibagirwa mu gihe cy’uruzinduko.

Tekereza kuzana umuntu wo mu muryango wawe cyangwa inshuti yawe mu ruzinduko rwawe. Bashobora kugufasha kwibuka amakuru yavuzwe no kugufasha. Kugira undi muntu aho hantu bishobora kugufasha cyane iyo urimo kwiga ku ndwara nshya cyangwa gahunda y’ubuvuzi.

Icyo ukwiye kumenya cyane kuri polycythemia vera

Polycythemia vera ni indwara ishobora kuvurwa kandi abantu benshi bayibana neza imyaka myinshi. Nubwo isaba ubuvuzi buhoraho no gukurikirana, abantu benshi bafite iyi ndwara bashobora gukomeza gukora, gukora ingendo, no kwishimira ibikorwa byabo bisanzwe hakoreshejwe ubuvuzi bukwiye.

Ikintu cy’ingenzi cyo kwibuka ni uko kuvumburwa hakiri kare no kuvurwa buri gihe bigira uruhare runini mu buzima bwawe bw’igihe kirekire. Gukorana n’itsinda ryawe ry’abaganga no gukurikiza gahunda yawe y’ubuvuzi bifasha gukumira ingaruka no kuguma wumva umeze neza.

Nturetse iyi ndwara ikugereranya cyangwa ikubuza. Hamwe n’ubuvuzi n’uburyo bwo gukurikirana ubu, abantu bafite polycythemia vera akenshi babaho ubuzima bwiza. Komeza ube ubumenyi, kurikiza gahunda yawe y’ubuvuzi, kandi ube ufite itumanaho ryiza n’abaganga bawe.

Ibuke ko kugira polycythemia vera ntibisobanura ko uri umuntu udakomeye cyangwa ko ugomba kubaho mu bwoba. Bisobanura gusa ko ufite indwara isaba ubuvuzi, kimwe na diyabete cyangwa umuvuduko w’amaraso ukabije. Hamwe n’uburyo bukwiye, ushobora gukomeza kubaho ubuzima buhamye kandi buzira umuze.

Ibibazo bikunze kubaho kuri polycythemia vera

Polycythemia vera ni ubwoko bwa kanseri?

Yego, polycythemia vera ihabwa izina ry’ubwoko bwa kanseri y’amaraso, ariko itandukanye cyane n’icyo abantu benshi batekereza ko kanseri ari yo. Ni indwara ikura buhoro buhoro idakwirakwira mu bindi bice by’umubiri wawe. Hamwe n’ubuvuzi bukwiye, abantu benshi bafite polycythemia vera babaho ubuzima busanzwe kandi bagira ubuzima bwiza. Ijambo “kanseri” rishobora gutera ubwoba, ariko iyi ndwara iroroshye kuvurwa kurusha kanseri zikomeye.

Polycythemia vera irakirwa?

Kuri ubu, nta muti wa polycythemia vera, ariko ivurwa kandi irafatwa neza. Abantu benshi babana n’iyi ndwara imyaka myinshi idahungabanya ubuzima bwabo bwa buri munsi. Ubuvuzi bugamije kugenzura ibimenyetso, gukumira ingaruka, no kubungabunga ubuzima bwawe. Ubushakashatsi burakomeza ku miti mishya, kandi abantu benshi bafite polycythemia vera babaho ubuzima busanzwe bafashwe neza n’abaganga.

Nzakenera kuvurwa no gukuraho amaraso iteka ryose?

Abantu benshi bafite polycythemia vera bakenera ubuvuzi buhoraho, ariko ubwinshi n’uburyo bishobora guhinduka uko igihe gihita. Bamwe mu bantu bakenera phlebotomy buri gihe mu buzima bwabo, abandi bashobora gufata imiti gusa. Gahunda yawe y’ubuvuzi izahinduka hashingiwe ku buryo utubuto tw’amaraso twawe tugengwa neza n’uko wumva.

Ndashobora kubyara niba mfite polycythemia vera?

Abantu benshi bafite polycythemia vera bashobora kubyara, ariko gutwita bisaba gukurikiranwa n’ubuvuzi bwihariye. Iyi ndwara ishobora kongera ibyago byo gufunga amaraso n’izindi ngaruka mu gihe cyo gutwita, bityo uzakenera gukorana n’umuganga w’indwara z’amaraso n’umuganga w’abagore. Imiti imwe ikoreshwa mu kuvura polycythemia vera igomba guhagarara mu gihe cyo gutwita, ariko hari ubundi buvuzi buhari. Gupanga mbere no gukorana n’abaganga bafite ubunararibonye ni ingenzi.

Nzakenera ibizamini by’amaraso n’ubugenzuzi buri kangahe?

Mu ntangiriro, ushobora kenera ibizamini by’amaraso buri cyumweru kugira ngo ugenzure uko ubuvuzi bwawe bukora. Iyo utubuto tw’amaraso twawe tumaze kugira umutekano, ibizamini bishobora kuba buri mezi make. Abantu benshi babona umuganga w’indwara z’amaraso buri mezi 3-6 kugira ngo bagenzure, nubwo ibi bishobora guhinduka hashingiwe ku mimerere yawe. Gukurikirana buri gihe ni ingenzi kugira ngo hamenyekane impinduka zose hakiri kare kandi ubuvuzi buhindurwe uko bikenewe. Uko iminsi igenda, abantu benshi basanga gahunda yabo y’ibikorwa iba isanzwe kandi idakunda kubaho.