Nicholas (Sickle cell chirwere)

Nicholas akaonekwa aine sickle cell chirwere achangoberekwa. Akatambura nemaoko-tsoka syndrome achiri mucheche ("Akachema akapora zvakanyanya nekuda kwekurwadziwa mumawoko nemakumbo," anoyeuka amai vake, Bridget) uye akabviswa nduru yake nechiropa pazera remakore 5. Penicillin, hydroxyurea uye mimwe mishonga yamubatsira iye nemhuri yake kubata chirwere uye nematambudziko ekurwadziwa anogona kukonzeresa kugara muchipatara. Iye zvino gumi neshanu uye anokudzwa mudzidzi pachikoro, Nicholas anofarira "kutandara," kuteerera mimhanzi, kutamba mitambo yemavhidhiyo, mutsimba uye kudzidza Brazilian jujitsu.

Nicholas akapinda muchirongwa chake chekutanga chemakiriniki makore angangoita matatu apfuura. Yakatarisa kuhukama pakati pekurovedza muviri uye chirwere chesero.

"Mumwe weahematologists pachipatara tinoenda kuti akacherekedza kuti Nicholas murwere anoshanda sekeresa murwere," Bridget anoyeuka. "Ari mumitambo, uye nehydroxyurea haamo muchipatara sezvaaimboita. Saka vakatibvunza kana taizoita chidzidzo chekutarisa kufema kwake. Ndakabvunza, paive nezvisina kunaka pazviri here? Uye chakaipa chete ndechekuti aizove nekufema, munoziva. Saka ndakabvunza Nicholas kana zvanga zvakanaka uye akati hongu. Uye isu takatora chikamu mazviri. Chero chii chingavabatsira kudzidza zvakawanda nezvechirwere ichi, tese tiri pachiri. ”

Kunyangwe chidzidzo ichi chaisafanirwa kuvandudza hutano hwevatori vechikamu, vese amai nemwanakomana vakafara nekutora kwavo mukana wekubatsira kufambira mberi ruzivo rwesainzi nezvechirwere ichi.

"Kutora chikamu muzvidzidzo izvi, ndinofunga zvinobatsira vanachiremba kuziva zvakawanda pamusoro pechirwere uye, munoziva, vanobuda nemishonga yakawanda uye kungobatsira munhu wese anayo," anodaro Nicholas. "Saka mhuri dzavo pamwe navo havazove, munoziva, mumatambudziko ekurwadziwa kana muchipatara."

Mushure mekuona kwakanaka kwemhuri neichi chidzidzo, muna 2010 Nicholas akapinda muchikamu chechipiri chemakiriniki. Uyu akadzidza kushanda kwemapapu muvechidiki vane chirwere chesero.

"Iye aichovha bhasikoro rakamira riine monitors rakanamatira paari," anodaro Bridget. “Uye ivo vaida kuti aende nekukurumidza vobva vadzikira. Uye enda nekukurumidza zvakare. Uye femera mukati mehubhu. Uye zvino vakadhonza ropa rake kuti vaedze. Pakange pasina kuvandudzwa kwehutano hwake, kwaingova kuona kuti munhu ane cell yemurume ari kushanda sei, unoziva, zvakaita mapapu avo. ”

Zvakafanana nemuedzo wekutanga, bhenefiti yekutora chikamu yanga isiri yaNicholas pachayo asi kubatsira vanachiremba nevatsvaguri kudzidza zvakawanda nezve sickle cell chirwere.

Nicholas anoti, "Ndinovimba vanachiremba vacherekedza zvakawanda sezvavanogona pamusoro pechirwere chesero, nekuti zvingangobatsira varwere vekeresa yemhuri nemhuri dzavo, munoziva, vasave muchipatara zvakanyanya. Kugona kuita zvavanoita zvakanyanya, kuva nehupenyu hwenguva dzose uye nekuenderera mberi nehurongwa hwavo hwenguva pachinzvimbo chekutora nguva yekuenda kuchipatara uye, unoziva, unoita nemarwadzo ese, zvinhu zvakadaro. ”

Bridget naNicholas vanoramba vakavhurika kuti vapinde mumamwe miedzo yekiriniki vachitarisa zvavanogadzikana semhuri.

"Ndinofunga kuti vamwe vanhu vanofanirwa kuzviita [kutora chikamu mukutsvagisa kwekiriniki] chero bedzi vasingafunge kuti pane zvakashata," anodaro. “Ndiri kureva, nei? Kana zvichibatsira kuti mahematologist vazive nezvesere maseru neimwe nzira, ini ndese zvangu. Tose tiri nezvazvo. Tinoda kuti vazive nepavanogona napo nezvesero remajere. ”

Yakagadzirwa zvakare nemvumo kubva ku. NIH haitsigire kana kukurudzira chero zvigadzirwa, masevhisi, kana ruzivo rwakatsanangurwa kana kupihwa pano neHealthline. Peji rekupedzisira rakadzokororwa Gumiguru 20, 2017.