Ita Zano Rako Rokurapa uye Ita Kuti Nyika Ive Nzvimbo Iri Nani
Ndinoshusha kudana James (Jamie) Heywood chinhu chikuru. Mushure mezvose, tinoziva kuti mauto makuru chete kunze uko ndiMichael Jordan (anokwanisa kubhururuka) uye Dos Equis '"Murume Anonyanya Kufarira Munyika" ("ramba uine nyota shamwari dzangu"). Zvisinei, mushure meHedwood yose inodanidzira mahombekombe echechi. Apo hama yake Stefano-iyo iyo nhoroondo dzose dzaive dzakanyanyisa chaizvo - yakaonekwa ne hellacious amyotrophic lateral sclerosis muna 1998, Heywood nemhuri yake vakawirwa nenjodzi isingaoneki.
Panzvimbo yekuchema pamusoro pebasa rake rakashata uye kuputira pakona, muna 1999, Heywood akabatana neshamwari nemhuri kuti agadzire ALS Therapy Development Institute, ikambani isina chekuita bhaotech yekambani nechinangwa chisina kushandiswa chokurova ALS.
Muna 2004, James Heywood akabatana nevarwere veLikeMe, kambani inonyengetedza uye inopa ruzivo rwehutano kune vanhu vane zvirwere zvisingaperi kuitira kuti vasabatsire vamwe varwere chete asiwo vanovandudza kunzwisisa kwechirwere chezvirwere uye rubatsiro kurongedza kutsvakurudza kwechipatara. Pakati pekuedza uku ndiko kunzwisiswa kwaHehewood kunoshamisa kwemasvomhu uye kushandiswa kwayo uye kunzwirwa tsitsi kune vose vanotambura nehosha isingaperi.
VarwereZvino Ndizvo Zviri Kuwedzera Kupera
Muna 2008, Heywood nevamwe vake vakatanga kugadzira nekubudiswa kwekutsvaga kusingazivi: Zvizhinji zveAIDS-zvidzidzo zvezvipfuwo zvinotungamirira kumisungo yevanhu zvakanga zvisingabatsiri uye zvisingakoshi.
(Zvinoreva nhamba yezvinyorwa zvitsva zvinowanikwa kune chimwe chinhu kunze kwenguva.) Nenzira inokosha, Heywood akaratidza kuti inopfuura hafu yesayenzi yekutsvakurudza kwesayenzi pane ALS yakanga yakakanganisa.)
Zvakawanikwa naHewoodwood zvakanyanya zvakanyanya-kusanganisira kugoverwa mune zveMhuka- asi zvishoma. Sezvinowanzoitika, masangano akadzika emishonga haaiti kuchinja.
Pakupedzisira kwekuwanikwa uku, Heywood akazvisimbisa semuverick pamusangano wekuenzanisa nhoroondo yega yega yekurarama nechirwere chisingagumi nekushandisa deta iyi kuchipatara nekutsvakurudza zvakanaka.
"Kana ukaona amyotrophic lateral sclerosis, multiple sclerosis , kuora mwoyo kana idiopathic pulmonary fibrosis," anodaro Heywood. "Zvakafanana nekurarama nehosha iyi ndiyo inonyanya kukosha yehutano." Zvatinotora ndezvipi zvinokosha kune vatachiona vanofanira kuzvitarisira ivo, [zvipimo zvinobatsira chirongwa chechiremba] zvingaita inotevera mukuchengetedza, uye muongorori anoongorora kana kana kwete kurapwa kwakagadzirisa kurwisa chirwere.Uye tinoita izvi zvose tichishandisa mazwi echirwere nemashoko ayo anonyatsonzwisisa. "
Nhaurirano muchidimbu: Ndakanyora nyaya pamusoro pe idiopathic pulmonary fibrosis . Jamie akaiverenga uye akaifarira - 'cuz y'all vanoziva kuti ndizvo zvandinoita - asi vakaratidza kuti kuneta kunogona kunge kwakawandisa kupfuura zvandinokurudzira uye, ahem , uchapupu-based assessment.
Heywood inoratidza kuti kuneta mune vanhu vane idiopathic pulmonary fibrosis kunobatanidzwa nehope yepamusoro uye oxygen isingakwanisi uye yakasiyana nekuneta kunowanikwa nevanhu vane mamwe marudzi ezvirwere zvisingaperi.
Uku kunzwisisa kunobva mumashoko echirwere MatidzimaiMuHeather, kambani yeHeatherwood, yakakonzerwa kubva kuzviuru zvevanhu vari kurarama nechirwere ichi. Ruzivo rwakadaro runogona kukanganisa kuti idiopathic pulmonary fibrosis inobatwa sei, sei vanhu vane chirwere ichi vanozvichengeta ivo pachavo, kuti vanachiremba vanoenzanisa sei zvirwere zvakanaka uye kufungidzira, uye kuti vatsvakurudzi vanosarudza sei zviratidzo uye mazano ekutsvaga kuongororwa kwechipatara.
Heywood nevamwe vake vakagadzirira kusvika pamamiriyoni makumi maviri nemashanu (dambudziko, kusuruvara, manzwiro, kuvhiringidza kwemishonga, kushandiswa kwemishonga nezvimwe zvakadaro) kubva kuvanhu 300 000 vane zvirwere zvinopfuura 2300 (funga kenza, coronary heart disease , hepatitis C , uye saizvozvo kunze).
Vanobva vadzika deta iyi yakabva pane zvidzidzo zvakasiyana-siyana uye zvino kushandisa predictive math mathemoni kuti arambe achivandudza kunzwisisa kwedu kwezvirwere. Mune mamwe mazwi, James anoshandisa "zvinoguma zvinorevei kune mumwe nomumwe wedu kuzivisa zviri nani pakupera kwekuedza nekuvandudza nzira yatinoyera nayo zvirwere."
Heywood anoti, "Kana ukawana boka revanhu pamwe chete, uye ona kuti chii chinokosha kwavari, unogona kushandisa ruzivo urwu kuti unyatsoongorora kana zvinhu zvinoshanda munyika chaiye uye zvinotungamirira kusarudza kwakanaka muchechiki ... Tinofanira kufungidzira uye uri kushanda kune nyika umo zvisarudzo zvose zvaunoita pamusoro pehutano hwako kana hutano hunozivikanwa nezvisarudzo nemigumisiro yevose vanouya mberi. "
VarwereZvinoMuenzaniso uri kuratidza kuburikidza nekuongorora kwekuongorora kuti nzira yatinoona nayo mishonga haigone, uye vazhinji vedu hatizivi kukanganisa kwakadaro.
"Vanhu vose vanotora hutano hwemazana makumi mapfumbamwe," anodaro Heywood, "kuti zvinyorwa zvavo zvezvechiremba zvinoshandiswa kunzwisisa zvirwere, kuvandudza kutarisira nekuvandudza zvinodhaka." Uye, sezvakanyatsoratidzwa naHeidwood, hazvisi izvozvi.
Pakupedzisira, Heywood anoziva kuti chirwere chinotungamirirwa ne phenotype, zvisikwa, chimiro nezvimwe zvakadaro. Anobvuma kuti vanachiremba vanoyevedza "mishonga yeheuristic," vanoshandisa ruzivo uye maitiro ekurapa varwere. Zvisinei, kugadzirisa matambudziko akadaro kunogona kuenzaniswa uye kugadziriswa kuita hupenyu huri nani kune vose chiremba uye murwere uye zvinoshamisa kuvandudza kutarisira isu tose.
"Mishonga inonyanya kuitika nyaya inotaura," anodaro Heywood. "Inoda masvomhu .... inoda kuva nematambudziko akawanda."
Maererano nevatanoLikeMe webhusaiti, kuti sangano rive "rakabatsira kutsigira uye kurambidza tsika dzechipatara dzakagadziriswa, dzakarongedza Parkinson's Disease, dzakagadziriswa nehutano hwehutano hwakanaka, dzakaratidza chiedza chitsva pamishonga yekuchengetedza mishonga kune varwere vane multiple sclerosis (MS) uye nhengo dzekugadzira, uye yakawedzerwa uye yakagadziriswa zvirwere zvinorondedzerwa zvinorondedzerwa mu psoriasis, autism uye nekutsvaga kweMS. "
Kupa Chirapa Zvako Zvako
VarwereZvino ndinokukoka kuti upe ruzivo rwako rwechiremba kune nzvimbo yavo. Maererano neNovember 17, 2014, rekubudiswa kwemashoko akadai "deta yakaiswa pachena uye inowanikwa pamwe chete nevanobatsirana kuti vabatsire kuunza inzwi remurwere kuongororo yezvokurapa, kukudziridza zvirwere zvekurapa zviri nani, nekugadzira michina mitsva nemishandira inowirirana nezvinoitwa nevarwere ruzivo uye chido. " Yezvinyorwa, kana uri kuverenga nyaya ino mushure me "Mazuva Mazuva Okupa" apera, iwe unogona kugovera ruzivo rwako rwechiremba.
Heywood anopfupisa mupiro wako nerinotevera: "Unofanira kuziva kuti kune mumwe munhu akafanana newe munyika anotarisana nechinetso chawakagadzirisa kana wakadzidza chimwe chinhu pamusoro. Enda kune varwereZvinoMe [uye ]govera zvaunowana , uye iwe uchabatsira munhu iyeyo. "
Pane imwe nyanzvi yemunhu, ini ndinowanzovhara kubva kumakambani-based stories. Kunyange zvakadaro, pasinei nekutengeserana-kana kuti sezvavanoriidza "kwete-kungoti-kubatsire" - business model, Jamie neshamwari dzake vakagadza VarwereLikeMe.com senzira kwatiri isu tose. Vanovimbisa kuisa deta yedu kushandiswa zvakanaka, uye ini ndinotenda zvachose. Saka ngatishandei uye tibatsire kuona fide "superhero" (ngatimufonese "Supermath," kuitora here? Ha ha, ini ndinondisimudza!) Pane basa guru kutiponesa isu tose!
Sarudzo Sources
Kubvunzurudza naJames Heywood musi wa12/10/2014
Mashoko akatorwa kubva ku www.PatientsLikeMe.com akawanikwa pa 12/13/2014
Keynote Presentation muna 2014 50th Annual Meeting: https://www.youtube.com/watch?v=aqPWv7wS90Y
"Zvigadzirwa, simba, uye kududzirwa kwezviongorori mumutambo wemu murine weAlS" neS Scott uye avo vaishanda navo kubva kuAmyotrophic Lateral Sclerosis yakabudiswa muna 2008. Yakasvika kubva kuPublicMed on 12/13/2014.