UNicholas (isifo se-Sickle cell)

UNicholas watholakala enesifo se-sickle cell ngemuva nje kokuzalwa kwakhe. Wayephethwe yi-hand-foot syndrome eseyingane (“Wayekhala futhi akhonze kakhulu ngenxa yobuhlungu obusezandleni nasezinyaweni zakhe,” kukhumbula umama wakhe, uBridget) futhi wakhipha inyongo nobende eneminyaka engu-5. I-Penicillin, i-hydroxyurea kanye neminye imithi kumsizile yena nomndeni wakhe ukuphatha ukugula kanye nezinkinga ezinzima zobuhlungu ezingadala ukulaliswa esibhedlela. Manje uneminyaka engu-15 futhi eyisitshudeni esihloniphekile esikoleni, uNicholas uyakujabulela "ukuzihlalela," ulalela umculo, adlale imidlalo yevidiyo, abambana futhi afunde iJujitsu yaseBrazil.

UNicholas wabamba iqhaza esivivinyweni sakhe sokuqala somtholampilo eminyakeni emithathu edlule. Kubhekwe ubudlelwano phakathi kokuzivocavoca nesifo se-sickle cell.

"Omunye wodokotela be-hematologists esibhedlela esiya kuso uqaphele ukuthi uNicholas uyisiguli esisebenzayo se-sickle cell," kukhumbula uBridget. “Usemidlalweni, futhi ne-hydroxyurea akasekho esibhedlela njengoba ayenjalo ngaphambili. Ngakho-ke basibuze ukuthi ngabe sizokwenza yini isifundo ukuze siqaphele ukuphefumula kwakhe. Ngabuza, ngabe kukhona okungahambi kahle kukho? Futhi okuwukuphela kokubi ukuthi wayezophelelwa umoya, uyazi. Ngakho ngabuza uNicholas ukuthi ngabe kulungile yini wathi yebo. Futhi sihlanganyele kukho. Noma yini engabasiza bafunde kabanzi ngalesi sifo, sonke sinaso. ”

Yize isifundo singahloselwe ukuthuthukisa impilo yabahlanganyeli ngokushesha, bobabili umama nendodana babejabule ngokubamba kwabo iqhaza nethuba lokusiza ekuthuthukiseni ulwazi lwesayensi ngalesi sifo.

“Ukubamba iqhaza ezifundweni, ngicabanga ukuthi kusiza odokotela ukuthi bazi kabanzi ngalesi sifo futhi, uyazi, baphume nemithi eminingi futhi basize wonke umuntu onaso,” kusho uNicholas. "Ngakho-ke imindeni yabo kanye nabo ngeke babe senkingeni yezinhlungu noma esibhedlela."

Ngemuva kokuhlangenwe nakho okuhle komndeni ngalolu cwaningo, ngo-2010 uNicholas wabamba iqhaza esivivinyweni sesibili somtholampilo. Lona wafunda ukusebenza kwamaphaphu kwentsha enesifo samaseli esikela.

“Wayehamba ngebhayisikili elimile neziqaphi zazinamathiselwe kuye,” kusho uBridget. “Futhi bebefuna ahambe ngejubane abese ehlisa ijubane. Futhi uhambe ngokushesha futhi. Futhi phefumulela kushubhu. Bese bedonsa igazi lakhe ukuze bamhlole. Akuzange kube ncono empilweni yakhe, bekuwukubona nje ukuthi umuntu oneseli lesikela osebenzayo, uyazi, ukuthi umsebenzi wamaphaphu wakhe unjani. ”

Ngokufana nokulingwa kokuqala, inzuzo yokubamba iqhaza ibingeyena uNicholas uqobo kodwa ukusiza odokotela nabaphenyi ukuthi bafunde kabanzi ngesifo se-sickle cell.

UNicholas uthi, “Ngiyethemba ukuthi odokotela bazothola okuningi ngangokunokwenzeka ngeseli lesikela, ngoba bekungasiza nje iziguli zamaseli amasikela nemindeni yabo, uyazi, ukuthi bangabi sesibhedlela kangako. Ukwazi ukwenza lokho abakwenzayo kakhulu, ukuba nezimpilo ezijwayelekile nokuqhubeka ngamashejuli abo kunokuthatha ikhefu lokuya esibhedlela futhi, uyazi, badlula kuyo yonke le nqubo yobuhlungu, izinto ezinjalo. ”

UBridget noNicholas bahlala bekulungele ukubamba iqhaza ezivivinyweni eziningi zemitholampilo ngenkathi becabanga ukuthi bakhululeke kanjani njengomndeni.

"Ngicabanga ukuthi abanye abantu kufanele bakwenze [ukubamba iqhaza ocwaningweni lomtholampilo] inqobo nje uma bengazizwa kukhona imiphumela engemihle," esho. “Ngisho, kungani kungenjalo? Uma kusiza ukwenza ama-hematologists azi ngeseli lesikela ngendlela ehlukile, ngilungele lokho. Sonke sinakho. Sifuna bazi okuningi ngangokunokwenzeka ngeseli lesikela. ”

Kukhiqizwe kabusha ngemvume kusuka ku-. I-NIH ayincomi noma incoma noma imiphi imikhiqizo, izinsizakalo, noma imininingwane echazwe noma enikezwa lapha yiHealthline. Ikhasi ligcine ukubuyekezwa ngo-Okthoba 20, 2017.