Nikela Ulwazi Lwasezokwelapha futhi wenze umhlaba ube indawo engcono
Nginganqikazi ukubiza uJames (Jamie) Heywood into emangalisayo. Ngemuva kwalokho, siyazi ukuthi ama-superheros kuphela angaphandle kukaMichael Jordan (ongakwazi ukuhamba) noDos Equis '"Umuntu Othakazelisayo Kakhulu Emhlabeni" ("uhlale unomile abangane bami"). Kodwa-ke, i-backstory yonke kaHaywood imemeza i-superhero e-archetypal. Ngesikhathi umfowabo uStefano - wonke ama-akhawunti ayeyindoda epholile ngempela - wathola ukuthi une-hellacious amyotrophic lateral sclerosis ngo-1998, uHaywood nomndeni wakhe babhekene nenhlekelele engabonakali.
Esikhundleni sokumemeza inhlanhla yakhe nokugubha ekhoneni, ngo-1999, uHaywood wahlangana nabangani nomndeni ukusetha i-ALS Therapy Development Institute, inkampani engekho inzuzo ye-biotech ngenjongo yokungasabi ngokushaya i-ALS.
Ngo-2004, uJames Heywood wabambisana nabaPhezuluLikeMe, inkampani ecela futhi ikwabelana ngolwazi lwezokwelapha kubantu abanesifo esingelapheki ukuze kungabi nje ukusiza ezinye iziguli kodwa futhi kuthuthukise ukuqonda kwemitholampilo kanye nokusiza ukuqondisa ucwaningo lwezokwelapha esikhathini esizayo. Ekubambeni kwale mizamo uHeavywood uqonda kahle kakhulu izibalo kanye nezicelo zayo kanye nesihawu esilandelayo kubo bonke ababhekene nezifo ezingapheli.
IziguliLokhu Kukhona Ukunciphisa Ukunciphisa
Ngonyaka ka-2008, uHaywood kanye nosebenza nabo baqala ukuphazamiseka ngokushicilelwa kokutholakala okungahlonipheki: Izifundo eziningi zezilwane zokucwaninga nge-ALS eziholela ekuvivinyweni komuntu zazingenakutholakali futhi azibalulekile.
(Ukubaluleka kwe-jargon yezibalo ukuze uthole okutholakala ngenye into ngaphandle kwesikhala. Ngokuyinhloko, uHaywood wabonisa ukuthi ngaphezu kwengxenye ucwaningo lwesayensi oluyisisekelo nge-ALS lwalungalungile.)
Ukutholwa kukaHaywood kwamukelwa okuningi kogcino - kufaka hlangana ukufakwa koMvelo- kodwa okunye okunye. Njengoba kwenzeka kaningi, izikhungo zemithi ezisekelweyo azizange zishintshe.
Ngemva kwalokhu kutholakala, uHaywood usezimele njengomsebenzi we-maverick emkhankasweni wokulinganisa ukulandisa komuntu siqu wokuphila nezifo ezingapheli nokusebenzisa le datha emitholampilo nasekucwaningeni okuhle.
"Uma ubheka i-amyotrophic lateral sclerosis, i- multiple sclerosis , ukucindezeleka noma i-idiopathic pulmonary fibrosis," kusho uHeywood. "Kuyinto engcono ukuhlala nalesi sifo cishe ukuthi yiyona ndlela engcono kakhulu ye-pathology. Lokhu esikuqoqayo yizinto eziguqukayo ezibalulekile ezigulini okufanele zizinakekele, [izinhlobonhlobo ezisiza umlenze] ukuthi benzeni esilandelayo ekunakekeleni, kanti umcwaningi uhlola ukuthi ngabe ukwelashwa kuphumelele yini ngokumelene nalesi sifo. Futhi senza konke lokhu ngokusebenzisa isilulumagama nesiguli abawaqonda ngokucacile. "
Iphuzu: Ngabhala isihloko mayelana ne- idiopathic pulmonary fibrosis . UJamie wayifunda futhi wayethanda - 'cuz y'all wazi ukuthi ngenza kanjani - kodwa wabonisa ukuthi ukukhathala cishe kungcono kakhulu kunokuthi ukuhlolwa kwami okusekelwe enkambeni , nokuhlola , okusekelwe ebufakazini.
U-Heywood ukhombisa ukuthi ukukhathala kubantu abane-fibrosis ye-idiopathic yamaphutha kuxhumene ne-apnea yokulala nokungaqiniseki oksijini futhi kuhluke ekukhatheni okuhlangenwe nakho kwabantu abanezinye izinhlobo zezifo ezingapheliyo.
Lokhu kuqonda kususelwe emininingwaneni yolwazi AbagulayoLikeMe, inkampani kaHaywood, babuthana kusuka ezinkulungwaneni zabantu abaphila nalesi sifo. Ukwaziswa okunjalo kungathonya indlela i-idiopathic pulmonary pulmonary ephathwa ngayo, ukuthi abantu abanesi sifo bazinakekela kanjani, ukuthi odokotela balinganisa kanjani ukubekezela kahle nokubikezela, nokuthi abacwaningi bakhetha kanjani ukushintshashintsha nokungenelela okuzogxila ekuhloleni okulindelekile emitholampilo.
U-Heywood nabalingani bakhe baye baqoqa amaphuzu angu-25 wezidakamizwa (cabanga ubuhlungu, ukuleleka, imizwelo, ukubekezelela imithi, ukunamathela kwemithi nokunye) kusuka kubantu abangu-300 000 ngezifo ezingaphezu kuka-2300 (cabanga ngomdlavuza, isifo senhliziyo , isifo sofuba se-C , kanjalo ukuphuma).
Bese baqoqa lolu datha olusuka kumasampuli ahlukahlukene bese sebenzisa izibonelo ze-predictive zezibalo ukuze kuthuthukiswe ngokuqhubekayo ukuqonda kwethu izifo. Ngamanye amazwi, uJakobe usebenzisa "yimiphi imiphumela enenjongo kithi ngamunye ukukwazisa ukuphela kokuhlolwa kwesilingo nokuthuthukisa indlela esilinganisa ngayo izifo."
U-Heywood uthi, "Uma uhlangana ndawonye, bese ubala ukuthi yini ebalulekile kubo, ungasebenzisa lolo lwazi ukuze uhlole ngokuphumelelayo ukuthi izinto zisebenza ezweni langempela futhi ziqondise izinqumo ezingcono emtholampilo .... Kufanele sicabange futhi usebenze waya ezweni lapho zonke izinqumo ozenzayo mayelana nempilo yakho noma ukunakekelwa kwezempilo zikwaziswa izinqumo nemiphumela yawo wonke umuntu ozayo ngaphambili. "
IziguliLokhu kuveza ngesifundo sokuhlola ukuthi indlela esibukeka ngayo emithini yemingcele, futhi abaningi bethu abazi ukuthi kunemikhawulo enjalo.
"Umphakathi uvele usuvele ube ngamaphesenti angaba ngu-80," kusho uHaywood, "ukuthi amarekhodi abo ezokwelapha asetshenziselwa ukuqonda izifo, ukuthuthukisa ukunakekelwa nokuthuthukisa izidakamizwa." Futhi, njengoba kuhloswe nguHeywood, akunjalo nje.
Ekugcineni, uHaywood uyaqaphela ukuthi lesi sifo sithonywa yi-phenotype, imvelo, i-biome njalonjalo. Uyavuma ukuthi odokotela bayimishini "enhle kakhulu," abasebenzisa isipiliyoni kanye nokwelapha ukuphatha iziguli. Kodwa-ke, ukuxazulula izinkinga ezinjalo kungalinganiswa futhi kuqinisekiswe ukwenza impilo ibe ngcono kangcono kokubili odokotela nesiguli futhi kuthuthukise ngokucophelela ukunakekelwa sonke.
Uthi: "Imithi ikhuluma kakhulu," kusho uHeywood. "Kudinga izibalo .... kudinga ukuba nezibalo ezithile ezinzima."
Ngokusho kwe-website ye-PatientsLikeMe, kuze kube yimanje, inhlangano "isisize ukuphikisa futhi imemezele izivivinyo zendabuko yangokwezifiso, ihlombe izifo zikaParkinson, iqinisekise ukulinganisa ikhwalithi ye-epilepsy, inika ukukhanya okusha emithini yeziguli ezine-multiple sclerosis (MS) nezingxenyeni zomzimba, futhi wengeze futhi waqinisekisa imiphumela yeziguli ezibikiwe kwi-psoriasis, i-autism kanye no-MS ucwaningo. "
Ukunikela ngezokwelapha imininingwane yakho
IziguliLikeMe ukumema ukuba unikeze ulwazi lwakho lwezokwelapha kusayithi labo. Ngokusho kuka-Novemba 17, 2014, ukukhishwa kwezindaba "imininingwane" yaziwa futhi yabelwana nabalingani bayo ukusiza ukuletha izwi lesiguli kucwaningo lwezokwelapha, ukuhlakulela ukuhlolwa okungokwelashwa okungcono, nokudala imikhiqizo namasevisi amasha ahambisana kakhulu neziphi iziguli isipiliyoni nesidingo. " Inothi, uma ufunda lesi sihloko ngemva kokuthi "Izinsuku ezingu-24 zokupha" sekuphelile, usengakwazi ukunikela ngolwazi lwakho lwezokwelapha.
U-Heywood ufingqa umnikelo wakho ngalokhu okulandelayo: "Kumele wazi ukuthi kuyoba khona umuntu onjengawe emhlabeni obhekene nenkinga oye waxazulula noma ufunde okuthile ngaye. Iya kuziguliLikeMe [futhi] wabelane ngolwazi lwakho , futhi uzomsiza lowo muntu. "
Encwadini eyengeziwe, ngivame ukuyeka izindaba ezisuka ezinkampani. Kodwa-ke, naphezu kokuthola inzuzo - noma njengoba beyibiza ngokuthi "hhayi-nje-inzuzo" - imodeli yebhizinisi, uJamie nabangane bakhe bamisa iziguli ezibizwa ngokuthi i-PatientsLikeMe.com njengensiza kithi sonke. Bathembisa ukubeka idatha yethu ekusetshenzisweni okuhle, futhi ngiyakholelwa ngokuphelele. Ngakho ake sonke singene futhi sisize "superhero" ehle (masibize ngokuthi "Supermath," ithole? Ha ha, ngiyaphazamisa!) On mission super ukusindisa sonke!
Imithombo ekhethiwe
Ingxoxo noJames Heywood ngo-12/10/2014
Ulwazi oluthathwa ku-www.PatientsLikeMe.com lufinyelele ngo-12/13/2014
I-Keynote Presentation ngo-2014 50th Meeting Annual: https://www.youtube.com/watch?v=aqPWv7wS90Y
"Ukuklama, amandla, nokuchazwa kwezifundo emfanekisweni we-murine ojwayelekile we-ALS" ngu-S Scott kanye nozakwabo abavela ku- Amyotrophic Lateral Sclerosis eyanyatheliswa ngo-2008. Ukutholakala kusuka ku-PubMed ngomhla ka-12/13/2014.