Mar 06, 2016
Welcome.ImBonnieFeldmanaec2onatelyknownasDrBonnie360andIdelightedtobebacktoStanfordMedicineX-asweworktogetherbridgetheautoimmuneabysstomaketheLonelyVoicesofAutoimmunediseaselesslonely.
Whointhisroomhasanautoimmunediseaseorknowssomeonewithanautoimmunedisease?
Aretheyintheir20s,30sor40s?Thereisasurprisingincreaseinmul2pleautoimmunediseasesforyoungadults.
2
WhorecognizestheGartnerHypecycle?(Itisusuallyawaytodescribetechadop;on)Surprisingly,sincelastyearIfoundmyselfrecapitula2ngtheHypeCycleinmypersonaljourneyasIbecamepar2cularlyinterestedinapplyingdigitalhealthtoolstoautoimmunediseases.
Baseduponmyresearchinterviewingmorethan200companiesandaTendingmorethan50digitalhealthmee2ngsIcreatedthisAutoimmunityHypeCyclewhichshowsthemicrobiomecomingupthehypecyclewhilemonoclonalan2bodieshavenallyreachedtheplateauofproduc2vity.Ifyouwouldliketoexplorethismore,seemeaXerthetalk,orcometomyworkshoptodayat1:20pm.[seelinkforworkshophTp://bit.ly/1JyIvKd].
3
WhydidItakethisplunge?Iheardthelonelyvoicesofautoimmunepa2ents,alsoknownasspoonies,callingtomeacrossanabyssoffrustra2on-whenIfoundmyselfinafamilyconstella2onofautoimmunediseases,includingpeoplemarryingintomyfamily!Theirsymptomswereharrowing,theiraTemptstonddiagnosisandtreatmentdisappoin2ng,andmyhopestopreventdiseaseinmygrandchildrenwerestymied.Autoimmuneisunderservedandunrecognizeddespitethefactthattheyaect16%oftheUSpopula2on,morethancancerandheartdiseasecombined!Yet,autoimmunediseases(includingT1diabetes)receiveonly$1BinNIHfundingperyear,unlikecancers,whichget72mesasmuchfunding.Canyoubelieve,ittakesonaveragemorethan3.5yearsand5doctorstogetadiagnosis?Oncediagnosed,theavailabledrugtreatmentsareusuallyappliedthroughalengthyandfrustra2ngprocessoftrialanderror.Wecanandmustdobe.er.
4
Listeningtothepeoplesstories,ledmetolookthereforanswerstotheselonelyvoices.(Thosewhoknowme,canaTestthatInevertakenoforananswer)
SoIdreamedofbecomingadisruptorinautoimmunedisease.Every;meIinterviewedanewcompany,Iwonderedhowwecouldapplytheirideastohelptheautoimmunecommunity.
And,IwasinspiredbythegroundbreakingworkofKathyGius2oftheMul2pleMyelomaResearchFounda2on.Shewasabletobringnewplayerstogetherthatspurredmul2disciplinarycollabora2oninnewanddierentways.
Lookattheremarkableresultsinjust10years-TheMMRFhelpedbring7cancerdrugstomarketandincreasedthelifeexpectancyofMMpa2entsfrom2.5to8years.
Weneedtobringthesecollabora1onstoautoimmunedisease.
5
Icon2nuedtodream.LastyearatMedXinGepngtoYes,Atthat2me,weenvisionedahightechandhightouchteamforunderservedautoimmunepa2ents.
Wesawafood-as-medicineteam,amusculoskeletalintegrityteamandawell-beingteam,allworkingincollabora2on.Thegoodnewsis,sincethat2meIseecomplementarymedicinegainingtrac2onintheautoimmunitycommunity.ImagineifwecouldgoonestepfurtherandtheseteamscouldcollaboratewithourWestern-trainedphysicians!THATSwhatIwanttomakehappeninautoimmunedisease.
6
Tomovefromdisillusionmenttoenlightenmentweneedtoworktogethertoadvancefromndingproblemstotakingac;on.The3meisright.Myresearch,whichyoucanndonslideshare,uncoveredthreetrendscomingtogethertoignitechange:
TherstisPa2entpower:thevoiceofthepa2ent,individuallyandcollec2velyisbecomingstrongerinresearch,developmentandclinicalprac2ce.Thesecondiscollabora2onanddatasharingtobuildconnec2onsacrossexis2ngspecial2esanddisciplines.Icallitsilobus2ng.
Thethird,Newinsights,istheconvergenceofresearchingenomics,immunology,microbiomics,etc.withinputfrommovementslikequan2edselfandci2zensciencetoturndataintoknowledge.
7
LetmetellyouastoryaboutawomanwhowellcallJudy.Judyisinher20s,sueringwithpainfulbutvariableGIsymptomsandpelvic/hippain.
Shegoesrsttohergeneralprac33oner,whooersstandardtreatmentstoquellhersymptomsandprobablydoesntevenconsiderautoimmunediseasesinherdieren2al.Herefershertorsttoanob/gyn,thentoanorthopedistandmaybetophysicaltherapyforherhippain,butdoesnotsuggestdietaryormind/bodyinterven2ons.Monthsgoby,hersymptomswaxandwaneandshebegsherdoctortodosomethingmore.Soherefershertoagastroenterologist,whoordersbloodtestsandacolonoscopy.Basedonbloodbiomarkersandvisibleintes2nalinamma2on,herGIdoctellshershehasIBD.Nowwhat?Anddoesthatdiagnosisexplainherhippain?Judyisinthetroughofdisillusionmentfeelingfrustratedandalone.
8
CannewdiscoveriesinimmunologyandthemicrobiomemoveJudyFromtheTroughofDisillusionmenttotheSlopeofEnlightenmentandthrowalifelinetoherandothersintheautoimmunecommunity?Aswediscussedlastyear,wearenowndingthattheGItractisamajororganofimmunityaec2ngbothhealthanddisease.Throughthegut-brainconnec2onourGIseveninuenceourmentalhealth!Thereseemstobecrosstalkbetweenourinternalmicrobialcommuni2esandourhostimmuneresponse.Newresearchsuggestslinksbetweenthemicrobiomeandautoimmunediseases,notjustGIones,butalsoLupusandRA.
9
ForJudy,woulddiagnosinghergutproblemsearlierhaveshortened2metotreatmentandpreventedprogression?Judydoesntreallyunderstandhertreatmentop2ons:oralcor2costeroidswithuglyside-eects,scary-soundingan2-inammatoriesormysteriousmonoclonalan2bodiesthatneedtobeinjected.ItshardtobelievethatevenforIBDandCrohns,thestandardofcaredoesnotyetincludedietaryinterven2ons.
SononeofJudysdocsevensuggestexperimenta2onwithdiet,exerciseorstresscontrol.But,manyautoimmunepa2entsandanincreasingnumberofdoctorsnowbelievedietiscrucial,notjustforGIautoimmunediseases,wheretheconnec2onseemsobvious,butalsoforHashimotos,RA,MS,Lupusandothers.Withlimited2mespentwithherMDs,shefeelslostandaloneduringthelongintervalsbetweenappointments.
10
SoJudy,baedandconfused,turnstoonlinepa2entcommuni2esforinforma2onandsupport.Incommuni2essuchasmyHealthteams,Chronology,autoimmunemom,PaleomomandFurtherfood.andothersJudycanndfolksexperimen2ngwithdiet.
Inothercommuni2es,likeSmartPa2ents,shendsinforma2onondrugandclinicaltrialop2ons.AndshendsuBiomeoeringtohelphertesthermicrobiome.Fromotherpa2ents,shehearsaboutYehudaSchoenfeldsautoimmunitycenter,wherepa2entsareseenbyautoimmunologistsandwonderswhyshecantndanautoimmunitycenterintheUS.
11
Butwhataboutherhippain?Hermusculo-skeletalproblemspersist.Shefeelsincreasinglydiscouragedas--shegetsreferredtoatrigger-pointPT,asoX-2ssuePT,anorthopedist,apodiatrist,ayogatherapist,awalkingtherapist,allwithoutmuchoverallimprovement.S2llfrustrated,shehearsabouttheworkofLarrySmarrandtheQSCollec2veandthinksthattrackingherowndatamayhelp.Soshebeginstotrackwhatsheeatsandhowshefeels,notjustGIsymptoms,butmusculo-skeletalones,too.
JudyisintriguedbymyNutri2onHealth,anappthatallowshertotracksymptomsagainstfoodtoexperimentwithanelimina2ondiet.
12
Wonderfully,Judydiscoversthatsomesimpledietarychangeselimina2onofnightshades:tomatoes,peppers,eggplantreduceshermuscular-skeletalpain.Inspired,Judywantstogofurtherexploringhermind/bodyconnec2on.ShendsJiyo,apersonalwell-beingcompanionviaacomprehensivedigitalplayorm.Thisplayormgivesyouwaystoengageandlearnfromothershowtobefeelwell.Basedon20yearsofworkofLeeHoodandtheIns2tuteofSystemsBiology,ArivalegivesJudyachancetounderstandhergenome,microbiomeandlifestyle.Bygatheringdatafromblood,salivaandthemicrobiome,shereceivespersonalizedroadmapalongwithcoachestoguideherwhattodotomaintainherhealth.Butwait,atthesame2meJudyreadsabouttheUCLAdatabreachandbeginstowonderaboutherowndata,whoownsitandwhathappenstoit.
13
Sogoingbacktobasics,Judythinksthatmaybeasystems-orientedapproachthatlooksattheunderlyingcauseofdiseasemayhelp.Unfortunately,YehudaSchoenfeldsautoimmunitycenterisbasedinTelAviv.PerhapsshecouldndaUS-basedprac2cefromtheIns2tuteforFunc2onalMedicine.OnautoimmunesummitshendstalksbyDrs.MarkHayman,SusanBlumandTerryWahls,whoallhaveautoimmunediseasesthattheycontrolledwiththeirowndietandlifestylechanges.ButshedoesnotknowwheretondFinally,shendstheOpenMedicineIns2tute,whereshendsour3themes-pa2entpower,newformsofcollabora2onandsharingaswellasnewdatainsights-putintoac2on.Builtfromthegroundupwiththepa2entatthecenter,pa2entsowntheirdatasupportedbyanopen-dataplayormcalledOpenMedNet.ThebackendoftheOpenMedicineIns2tuteisanopen-source,mobile-enabledintegra2onplayormthatallowsdatasharingfrommanyfeeds:smartphones,emails,texts,fax,Webandsoon.
14
Thiscollabora2veapproachconnectsallthoseinvolvedinJudyscare-physicians,casemanagers,imagingservices,andclinicallabs.(collabora2onanddatasharing)Attheclinic,doctorsperformadvancedlabtes2ngincludinggenomicsandmicrobiomics.Importantly,thisdataiscollectedover2me,allowingJudytotrackherprogress,supportedbynutri2onistsandotherspecialists.
Furthermore,whileattheclinic,Judyndsoutaboutclinicaltrialsandhowshecandonateherdatatoresearch.(helpingtoturndataintoinsights)
ThegoodnewsisthatJudyhasleXthetroughofdisillusionment.Sheisnowenteringtheslopeofenlightenment,throughpa2entpower,newformsofcollabora2onanddatasharing.Judyisnolongerfeelingisolatedandalone.Judyfeelsempoweredandcomforted.
15
WhatelsecouldhelpJudyandpa2entslikeher?Howcanwecreatenewcenterswhereshefeelssupported,encouragedandempowered?Whatifwecouldtakethebestoffunc2onalmedicine,lookingattherootcauseofdiseaseandcombineitwiththeopendatasharingandanaly2ccapabili2esoftheOMI
AndgiveJudyandherteamanexpandedtoolkitwhichusesthebestofconven2onalandcomplementaryapproachesshownhere.Thisapproachwouldbeinanopenandsharingsystemthatfostersthegrowthofaglobalknowledgesharingcommunityforautoimmunepa2ents.Wewelcomeallofyourhelpasweworktogethertomakethelonelyvoicesofautoimmunediseaselesslonely.Link:hTp://bit.ly/20xRCXOHelpushelpyouandothersadvancefromndingproblemstotakingac2on.Joinusintheworkshopat1:20today.
16