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Nicholas raug kuaj pom tias muaj mob ntsws ntshav sai sai tom qab nws yug los. Nws tau mob los ntawm txhais tes taw mob thaum menyuam mos ("Nws quaj thiab scooted ncig ntau vim yog mob ntawm nws txhais tes thiab taw," nws niam, Bridget) thiab tau ua nws lub plab zais thiab nti tawm thaum muaj hnub nyoog 5. Penicillin, hydroxyurea thiab lwm yam tshuaj tau pab nws thiab nws tsev neeg tswj hwm tus mob thiab cov kev mob hnyav heev uas tuaj yeem ua rau pw hauv tsev kho mob. Tam sim no 15 thiab ib tus tub ntxhais kawm ntawv tau txais txiaj ntsig hauv tsev kawm, Nicholas nyiam "dai tawm," mloog nkauj, ua si video games, sib twv thiab kawm Brazilian jujitsu.

Nicholas tau koom nws thawj qhov kev sim tshuaj mob txog peb lub xyoos dhau los. Nws saib ntawm kev sib raug zoo ntawm kev tawm dag zog thiab kab mob cell.

Bridget hais tias, "Ib qho ntawm cov hematologist nyob rau hauv tsev kho mob peb mus pom tias Nicholas yog ib tus neeg mob qog ntawm tes," "Nws nyob hauv kev ua kis las, thiab nrog hydroxyurea nws tsis nyob hauv tsev kho mob ntau npaum li nws ib txwm muaj. Yog li lawv tau nug peb tias peb yuav ua qhov kev kawm los saib xyuas nws txoj pa. Kuv nug, puas muaj qhov tsis zoo rau nws? Thiab tsuas yog qhov tsis zoo yog nws yuav tawm ntawm kev ua pa, koj paub. Yog li kuv thiaj nug Nicholas yog tias nws zoo thiab nws hais tias yog. Thiab peb koom tes nrog nws. Txhua yam uas tuaj yeem pab lawv kawm paub ntau ntxiv txog tus kabmob, peb txhua tus puavleej muaj. "


Txawm hais tias txoj kev tshawb fawb tsis yog txhawm rau txhim kho cov neeg koom nrog kev noj qab haus huv tam sim ntawd, leej niam thiab tus tub zoo siab nrog lawv koom tes thiab muaj lub sijhawm los pab ua ntej kev paub txog tus kabmob.

Nicholas tau hais tias "Kev koom nrog txoj kev tshawb nrhiav no, kuv xav tias nws pab cov kws kho mob paub tseeb txog tus kabmob thiab, koj paub, tawm tshuaj nrog ntau dua thiab tsuas pab txhua tus neeg uas muaj," "Yog li lawv tsev neeg thiab lawv yuav tsis nyob, koj paub, thaum muaj kev nyuaj siab los sis hauv tsev kho mob ntau npaum li cas."

Tom qab tsev neeg qhov kev paub zoo nrog txoj kev tshawb nrhiav, xyoo 2010 Nicholas koom nrog kev sim zaum ob. Qhov no ib tug kawm txog lub ntsws muaj nuj nqi rau cov hluas uas muaj mob rau cov ntshav.

Bridget hais tias, "Nws caij tsheb kauj vab nyob ruaj ruaj nrog cov saib ze rau nws," Bridget hais. “Thiab lawv xav kom nws mus nrawm dua thiab qeeb qeeb. Thiab mus nrawm dua. Thiab ua pa rau hauv lub raj. Thiab tom qab ntawd lawv tau kos nws cov ntshav coj mus kuaj. Tsis muaj kev txhim kho hauv nws txoj kev noj qab haus huv, nws tsuas yog txhawm rau pom tias tus neeg mob qog cell uas nquag ua haujlwm, koj paub, lawv lub ntsws zoo li cas. "


Zoo ib yam li thawj zaug kev sim, qhov tau txais txiaj ntsig los ntawm kev koom nrog tsis tau rau Nicholas tus kheej tab sis los pab cov kws kho mob thiab cov kws tshawb nrhiav kawm paub ntau ntxiv txog cov kab mob ntsws.

Nicholas hais tias, "Kuv vam tias cov kws kho mob tau txheeb xyuas ntau npaum li lawv tuaj yeem ua tau rau cov neeg mob cell, vim tias nws tsuas yog pab cov neeg mob ntawm tes thiab lawv tsev neeg xwb, koj paub, tsis yog nyob hauv tsev kho mob ntau. Muaj peev xwm ua dab tsi lawv ua ntau dua, muaj lub neej tsis tu ncua thiab nqa nrog lawv cov sij hawm sib hloov tsis txhob siv sijhawm so mus tom tsev kho mob thiab, koj paub, mus dhau ntawm tag nrho cov txheej txheem ntawm kev mob, tej yam li ntawd. "

Bridget thiab Nicholas tseem qhib rau koom nrog kev sim ntau ntxiv thaum xam tias yog dab tsi lawv nyiam nyob ua tsev neeg.

Nws tau hais tias "Kuv xav tias lwm tus neeg yuav tsum tau ua [koom nrog kev tshawb fawb hauv tsev kho mob] tsuav lawv tsis xav tias muaj qhov ua tau tsis zoo," nws hais. “Kuv txhais tau tias, vim li cas ho tsis? Yog tias nws yuav pab ua kom cov hematologists paub ntawm sickle cell hauv txoj kev sib txawv, Kuv yog txhua tus. Peb tag nrho rau nws. Peb xav kom lawv paub ntau npaum li lawv muaj peev xwm ua tau cov xov tooj ntawm tes. "


Luam dua nrog kev tso cai los ntawm. NIH tsis lees paub lossis pom zoo ib yam khoom, kev pabcuam lossis cov ntaub ntawv piav qhia lossis muab ntawm no los ntawm Healthline. Nplooj ntawv kawg rov los saib Lub Kaum Hlis 20, 2017.

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