Amagorwa yo kubaho ufise indwara idasanzwe ituma “ashobora gutabwa nk’akanuka”

Insiguro y’isanamu,

Fide Mirón afise imyaka 46 kandi nta kindi kintu kindi azi mu buzima bwiwe kiretse urugamba n’indwara yiwe.

Fide Mirón yari afise imyaka 18 igihe atangura kubona ko ariko arahohoterwa n’urunganwe mu gisagara ca Barcelona.

Baramwirukanye, bamufata nk’igikinisho, nk’uko we nyene abivuga.

Bamuraba nk’agahabwa baravye isura yiwe ingene yari imeze, isura yiwe yahindutse kubera indwara izwi kw’izina rya porphyrie érythropoïétique congénitale.

Iyo ni indwara idasanzwe idakunze kwobonekeza ariko mbi cane, yanduye kuva akiri uruhinja.

Haciye imyaka 15, Fide yahawe ubutumwa budasanzwe.

Bwari buvuye kuri umwe mu bahora bamutyekeza, ariko asaba imbabazi ku nyifato y’ubwana – nk’uko wenyene abivuga ubu – yerekanye kuri we igihe yari mu myaka y’ubuyabaga.

Uyu nyene kwigaya yaributse Fide igihe yariko atanga ikiganiro ku banyamakuru aho yavuze ko yarwanije uyu muntu yari fafashwe n’indwara ico gihe yitwa Günther.

Ariko rero ntakunda kuvuga “ivyamubayeko muri kahise”. Ntaco bikivuze kuri we.

Ikimuha ingoga ni uko ubuzima bwiwe bwitaweho cane mbere n’utwigoro tukaba turiko turakorwa kugira ngo haboneke inyishu canke umuti wo gushobora kugabanya ingaruka z’indwara yiwe.

Yonona igitigu (umwijima mu Kinyarwanda), igatuma umuntu akama amaraso, akagira ibisebe ku ruhu. Ibihimba vy’umubiri birabora gushika aho bikoroka, arico gituma bayita ‘porphyria mutilante’.

Mirón ubu afise imyaka 46, uku niko asigura ubuzima bwiwe bwose.

“Ububabare budahera, burenze urugero, bubabaza umutima”

Iyi ndwara irababaza cane.

Ibisebe vyatanguye kwibonekeza afise amezi atandatu gusa, akiri uruhinja.

Insiguro y’isanamu,

Ibikomere vya mbere vyatanguye kwibonekeza ku mezi atandatu kandi ico gihe nta bintu vyinshi vyari bizwi kuri ino ndwara

Abavyeyi banje barantwaye kwa muganga, ariko ico gihe nta bintu vyinshi vyari bizwi kuri ino ndwara.

Ico bambwiye conyene ni izina ryayo.

Nta muti wari ho – mbere gushika n’ubu ntawubaho – kandi gushika ubu nta wuzi nimba uzoteba uboneka.

Ati: “Ikintu conyene cari kizwi ni uko yari indwara ikomeye cane, vyumvikana ko ntari gushobora kubaho mu buzima busanzwe nk’ubw’abandi.

“Vyari ngombwa ko ngerageza kwirinda ico cose cotuma nsinzikara, nategerezwa kwirinda kuja ku zuba.

“Kubera ko iyi ndwara yanteye gukama amaraso, nakenera guhabwa amaraso buri minsi 15. Mu bwana bwanje bwose namye mpabwa aya maraso.

“Iyi ndwara yaza nk’ikiza, uko bukeye uko bwije. Uko navyuka mu gitondo niko nasanga haje igikomere gishasha.

Kubera ibikomere naracitse ibikonjo, isura yanje irasibangana. Bwari ububabare budahera, burenze urugero, bubabaza umutima.”

Insiguro y’isanamu,

Iyi ndwara ituma inyama z’umubiri zivako zigakoroka, mbere n’amagufa yoroshe cane cnake y’amaboko acika

Ku myaka 14, niho umubiri wiwe wahagarika ivyo kwama aterwa amaraso.

Indwara yarahagaze. Ariko ntaho yagiye, ni nk’uko yabaye imuhaye akaruhuko.

“Ububabare burabandanya, ariko ntabwo bikomeye nko mu bwana bwanje. Iriyadukiza.”

“Si nsa n’abandi kubera ingaruka z’iyi ndwara. Ziribonekeza. Ndazi neza ko zishobora kuntuma ntabwa nk’akanuka.

“Ariko ibi ntaco bimbwiye.

“Umuntu wese yashatse kumenya uwo ndi we aranzi ingene meze n’ico nshoboye.

“Umuntu wese yagumanye n’umurwayi Fide yarabonye ko ubu buzima n’ububabare nagize vyampaye inguvu.

“Nivyo koko narababaye cane igihe iyo miyabaga i Barcelona bariko barantyekeza.

“Umuntu arigira uw’ejo agafata ko ata n’umwe ariko aramuraba. Ku muhingamo w’uyo munsi narabaye igikinisho ciwe.

“Ariko ivyo ni ibisanzwe, ni ikintu gito cane c’ubwana, ariko kubona inyuma y’imyaka myinshi yubahutse kunsaba imbabazi biranezereye cane.

Akomeza ati: “Ikintu kibi cane ntabwo ari ububabare umuntu yumva, ni irungu.

Ntabwo nshaka kuvuga irungu ry’ukuba uri ukwawe, oya, ahubwo ni irungu ryo kubura inyishu, ukabura n’abakwereka inzira wofata.

“Mfise abaganga banshigikira, ariko ntabwo higeze haboneka umuti nyawo.

“Ni ibihe biremereye cane rwose kandi bibabaza, iyo wumva ko inzira zose zugaye kandi utagira iyo uja.

“Iyo mbajije inyishu, numva umengo ndiko ntera ingorane. Ikibazo canje kiragoye cane kandi kubera ko twese tugenda twihuta, rimwe na rimwe twitaho gusa ibintu twibaza ko dushobora gutorera umuti.

“Si benshi bameze nkanje.”

Insiguro y’isanamu,

Kuva akiri muto Fide yatanguye kurondera abandi bantu boba bameze nkawe kugira ngo bahimirize ubushakashatsi mu ntumbero yo kurondera umuti

Yongera ati: “Kuva nkiri muto natanguye kurondera abandi bantu boba bameze nkanje kugira ngo duhimirize ubushakashatsi mu ntumbero yo kurondera umuti.

“Hari umwe nashoboye gutora muri Cuba, uwundi muri Brezili, uwundi muri Leta Zunze Ubumwe za Amerika.

“Ndafise abantu umunani bari muri Espanye. Nka bose bameze neza, ariko mu ci riheze hari umugenzi yapfuye.

“Indwara yiwe yahavuye imera nabi. Ntushobora kumenya uko ibintu bizogenda.

“Nico gituma ubu nitayeho cane kuyerekana no kurondera inyishu.

“Kimwe mu vyo nashoboye gushikako mu bushakashatsi nakoze, ni uko nashoboye guhura na muganga Millet maze dutangura urugendo rwo kurondera umuti.

“Iyi nzira iriko iratanga umwimbu kuko mu myaka ibiri iheze hashoboye kuboneka umuti ukora kuri ino ndwara.

“Waramaze kwemzwa n’ikigo c’ubuvuzi c’i Burayi (European Medicines Agency) ubu turindiriye ko bawukorera igerageza mu buvuzi kugira ngo turabe ingaruka zawo ku barwayi.”

Ni inzira itanga umwizero.

“Numva umengo nshobora kuguruka”

“Umuryango wanje wambereye ubuzima bwanje. Papa yampaye amaraso nari nkeneye kugira ngo nshobore kubandanya mbaho, ariko maze kugera ku myaka icenda yarapfuye ahitanywe n’isanganya ry’umuduga.

Urupfu rwiwe rwaradukozeko twese, ariko cane cane jewe.

“Inkingi y’amagara yanje yari isenyutse ni umuntu yampaye amaraso yiwe.

“Ubuzima ni amazi. Uno munsi uriho ariko ejo nturiho. Nategerezwa kurwana kugira ngo nshobore kubandanya mbaho.

Insiguro y’isanamu,

Ikintu cose gishika mu buzima ngo cibe icigwa. Ndiho kugira ntange icigwa

“Ku rundi ruhande, mama yamye anshigikira kandi yikoreye umuzigo munini w’indwara yanje. Ni umuntu akomeye cane kandi ntiyigeze ahengeshanya kunyitaho.

“Ubu ntegerezwa kwitaho ubuzima bwanje gusumba, ariko iyo ndonse akanya ndakunda gutembera, nkabonana n’abantu kugira ngo nsangire ivyiyumviro nabo.

“Ubu ubuzima bwanje bwarahindutse. Nk’umugore akiri muto, sinashoboye kwiga kubera uburakari bw’iyi ndwara n’imiti yayo ibabaza cane, ariko natanguye igikorwa co kwigisha abantu.

“Ikinti ico ari co cose kiba mu buzima gitanga icigwa kanaka.

“Numva umengo nshobora kuguruka”.

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