Nikela ngeNkcukacha Zonyango kwaye Yenza Ihlabathi Libe Ngcono
Ndiyanqikaza ukubiza uJames (Jamie) uHewnwood. Emva koko, siyazi ukuba i-superheros kuphela yilapho uMichael Jordan (ngubani onokubhabha) kunye noDos Equis '"Oyena mntu unomdla kakhulu kwihlabathi" ("uhlale unxaniwe ngabahlobo bam"). Nangona kunjalo, i-backwood yonk Xa umntakwabo uStefano - ngezo zonke iingxelo wayeyindoda epholileyo - wafumanisa ukuba u-hellacious amyotrophic lateral sclerosis ngo-1998, uHenwood nentsapho yakhe babethwa yintlekele engabonakaliyo.
Esikhundleni sokubulela inhlanhla yakhe kunye nokukhwaza ekhoneni, ngo-1999, uHenwood wadibanisa nabahlobo kunye nosapho ukuseka i-ALS yeCandelo loPhuhliso lweZonyango, inkampani engekho ngenzuzo ye-biotech inkampani eneenjongo ezingabonakaliyo zokubetha i-ALS.
Ngo-2004, uJames Heywood wabambisana nabaPatientsLikeMe, inkampani ecela kunye nokwabelana ngolwazi lwezokwelapha kubantu abaphethe izifo ezingapheliyo ukuze bangabancedi kuphela ezinye izigulane kodwa banokuphucula ukuqonda kwezonyango zezifo kunye nokuncedisa ukujonga uphando lweklinikhi ezayo. Ngundoqo yale mizamo iHasswood ingqiqo enkulu yeemathematika kunye nezicelo zayo kunye neentsikelelo eziqhubekayo kubo bonke abaphethwe zizifo ezingapheliyo.
IzigulaneLoMzimba
Ngonyaka ka-2008, uHaywood kunye noogxa bakhe baqala ukutshiza ukupapashwa kokufumanisa okungazikhunjisi: Izifundo ezininzi zezilwanyana zophando ezi-ALS ezikhokelela kwizilingo zomntu zazingenakulinganiswa kwaye zingabalulekanga.
(Okubalulekayo kwintetho yesigxina ukwenzela ukuba kufunyanwe kuthiwa yinto ethile ngaphandle kwamathuba.) Okokuqala, uHenwood wabonisa ukuba ngaphezu kwehafu yesayensi yophando lwe-ALS yaphosakeka.)
Iziphumo ze-Heywood zamukelwe uninzi lwe-press-kuquka ukuxhamla kwendalo- kodwa enye enye. Ngokuqhelekileyo kwenzeka, amaziko atyunjwe ngamayeza awazange atshintshe.
Ekuvukeni kwalolu hlobo, uHaywood uzimelele njengengummangaliso kwi-mission yokulinganisa ingxelo yomntu siqu yokuphila nezifo ezingapheliyo kunye nokusebenzisa le nkcukacha kwizonyango kunye nophando oluhle.
"Ukuba ubheka i-amyotrophic lateral sclerosis, i- multiple sclerosis , ukudandatheka okanye i-idiopathic pulmonary fibrosis," kusho uHeywood. "Yintoni enokuhlala ngayo nesi sifo mhlawumbi sisona sifanelekileyo sisifo." Yintoni esiyiqokelelayo yimiba ebalulekileyo kwizigulane ezimele zizinyamekele, [iinguqu ezinceda isicwangciso sonyango] ukuba wenze ntoni olulandelayo ekunyamekelweni, kwaye umphandi uvavanye nokuba ingekho unyango olusebenzayo malunga nesi sifo. Senza konke oku kusebenzisa isigama nesigulane esicacileyo. "
Kwimeko kwinqanaba: Ndabhala inqaku malunga ne- idiopathic pulmonary fibrosis . UJamie wayifunda kwaye wayethanda - 'cuz y'all uyazi ukuba yintoni endiyenzayo - kodwa wachaza ukuba ukukhathala mhlawumbi kuninzi kunene kunokuba ndixhamle kunye novavanyo lwama -based based evidence.
U-Heywood ubonisa ukuba ukukhathala kubantu abantu abane-puldiary pulmonary fibrosis kudibaniswa nokulala kwe-apnea kunye ne-oksijini engenakwanela kwaye ihluke ekukhatheni kwabantu abaneminye yezifo ezingapheliyo.
Olu ngqiqo lusekelwe kwiinkcukacha zonyangoLikeMe, iqumrhu likaHaywood, lihlangene ukusuka kumawaka abantu abaphila nesi sifo. Ulwazi olunjalo luyakuchukumisa indlela i-idiopathic pulmonary fibrosis ephathwa ngayo, njani abantu abanesi sifo bazinyamekela, njani ukuba oogqirha balinganisa njani isigulane kakuhle kunye nokuchaswa, kunye nendlela abaphandi abakhetha ngayo iindlela kunye nokungenelela okujoliswe kuzo ekujoliseni ukuhlolwa kweekliniki ezizayo.
U-Heywood kunye nabalingane bakhe baye badibanisa izigidi ezingama-25 zeenkcukacha ze-data (cinga intlungu, ukungazinzi, ukunyamezela, ukunyamezela ngamachiza, ukunyamezela ngamachiza kunye nokunye) ukusuka kubantu abangama-300,000 kwizifo ezingama-2300 (cinga umdlavuza, isifo senhliziyo , i- hepatitis C , kwaye kuphuma).
Emva koko baqhekeza le datha efumaneka kwiisampuli ezahlukileyo baze basebenzise imodeli yeembalisi zokuqhelanisa ukuqhubeka nokuphucula ukuqonda kwethu kwezifo. Ngamanye amazwi, uYakobi usebenzisa "iziphi iziphumo ezinentsingiselo kumntu ngamnye wethu ukuzisa iiphelo zokugqibela zesilingo nokuphucula indlela esilinganisa ngayo isifo."
U-Heywood uthi, "Ukuba ufumana iqela labantu kunye nokulinganisa oko kubalulekile kubo, ungayisebenzisa le ngcaciso ukuba uhlole ngokuthe ngempumelelo ukuba izinto zisebenza kwihlabathi langempela kwaye zikhokela ukhetho olungcono kwiklinikhi .... Simele sicinge kwaye usebenze kwilizwe apho zonke izigqibo ozenzayo malunga nempilo yakho okanye unyango lwempilo zikwaziswa zizigqibo kunye neziphumo zabo bonke abaza kuqala. "
IzigulaneLikeMe zibonakalisa ngokufunda ngokuqwalasela ukuba indlela esibujonga ngayo amayeza ayinqinqi, kwaye abaninzi bethu abayifumene nokunciphisa okunjalo.
"Uluntu luye lwaba lusezingeni elingama-80 ekhulwini," kusho uHaywood, "ukuba iirekhodi zabo zonyango zisetyenziselwa ukuqonda izifo, ukuphucula nokunyusa iziyobisi." Kwaye, njengoko kukhuthazwa nguHaywood, akunjalo nje.
Ekugqibeleni, uHenwood uyaqonda ukuba isifo sithonywe yi-phenotype, imvelo, i-biome njalonjalo. Uyavuma ukuba oogqirha bamagcisa "oomatshini obungqina," abasebenzisa amava kunye nokunyanga ukuba baphathe izigulane. Nangona kunjalo, ukuxazulula ingxaki okunokuthi kunqunywe kwaye kulungelelaniswe ukwenza ubomi bube bhetele kubo boogqirha kunye nesigulane kunye nokuphucula ngokunyamekela sonke.
Uthi u-Heywood uthi: "Udinga ibali elibi kakhulu," kusho uHeywood. "Kudinga izibalo .... kufuneka zifumane izibalo ezinzima."
Ngokwe-website ye-PatientsLikeMe, ukuya kumhla, umbutho "uncedise ukuphikisa nokukhusela izilingo zonyango eziqhelekileyo, ukutyhila izifo zeParkinson, ukuqinisekiswa kwamanyathelo omgangatho wokuphucula, ukukhanyisa ngokutsha imithi kwizigulane ezine-multiple sclerosis (MS) kunye nokuguqulwa kwamalungu, kunye yongezwa kwaye iqinisekiswe iziphumo ezichazwe ngesigulane kwi-psoriasis, autism kunye no-MS uphando. "
Ukunikezela ngezoLonyango ulwazi lwakho
IzigulaneLikeMe ukumema ukuba unikele ngolwazi lwakho lwezonyango kwiziko labo. Ngomhla ka-Novemba 17, 2014, ukukhutshwa kogcino "olo datha luye lwafunyanwa kwaye lwabelwana kunye namaqabane ekuncedeni ukuzisa ilizwi lesigulane kunyango lwezokwelapha, ukuphucula izilingo ezingcono zekliniki, nokudala iimveliso ezintsha kunye neenkonzo ezixhomekeke kwiziphi izigulane amava kunye neemfuno. " Inqaku, ukuba ufunda le nqaku emva kokuba "iinyanga ezingama-24 zokunika" sele iphelile, unako ukunikela ngolwazi lwakho lwezokwelapha.
U-Heywood ubingelela umnikelo wakho ngala mazwi alandelayo: "Ufanele ukwazi ukuba kuya kuba nomntu onjengawe kwihlabathi elijongene nengxaki oye wayisombulula okanye ufunde okuthile malunga nayo. Yiya kwizigulaneLikeMe [kwaye] wabelane ngamava akho , kwaye uya kunceda loo mntu. "
Kwiphepha elongezelelweyo, ndihlala ndisiya kwiibali ezisekelwe kwiinkampani. Nangona kunjalo, nangona kungeniso-nzuzo-okanye njengoko bayithiwa "kungeyena-ngenzuzo" - imodeli yoshishino, uJamie kunye nabahlobo bakhe bamisela izigulaneLikeMe.com njengesixhobo kuthi sonke. Ba thembisa ukubeka idatha yethu ekusebenziseni kakuhle, kwaye ndiyakholelwa ngokupheleleyo. Ngoko ke sonke makangene ngaphakathi kwaye sincede i-"superhero" (masiyibize ngokuthi "Supermath," niyifumane? Ha ha, ndiyichitha!) Kwi-mission enkulu yokusindisa sonke!
Imithombo ekhethiweyo
Udliwano-ndlebe noJames Heywood ngo-12/10/2014
Iinkcukacha ezithathwe kwi-www.PatientsLikeMe.com zifikelele ngomhla we-12/13/2014
I-Keynote Presentation ngo-2014 Ingqungquthela Yonyaka Yonyaka: https://www.youtube.com/watch?v=aqPWv7wS90Y
"Ukuyila, amandla kunye nokutolika kwezifundo kwi-standard murin model ye-ALS" nguS Scott kunye noogxa be- Amyotrophic Lateral Sclerosis eyapapashwa ngo-2008. Ukufikelela kwi-PubMed ngo-12/13/2014.