Thread by @jilliannec

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz First, reaction to what #patients think about the new #UniversalDefinition ... A step forward ... ? But it is still #failure Should be #FunctionNotFailure /2

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz What about #CHD "Does this mean I was at risk when I was born?" ... "I could be at risk for HF, but how am I to manage my days is still missing ... " "It's nice that there are categories, but how do you translate that to people who need to process it?" /3

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz "You can go back and forth between stages" ... at least HF and Advanced HF. The NYHA classes seem to recognize the transient nature..." Heart failure should remain heart failure, but clinics should be #FunctionNotFailure /4

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz Question: Why does it seem that nobody knows about heart failure? "Unless you have the experience you don't know what it means" "People think your heart works or it doesn't" Yet. upward of 64Million people world wide suffer from it .. diagnosed or not ... /5

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz Not knowing what #heartfailure is, divided the #health agenda. It is invisible. You cannot see it. "The number of people who've I tried to explain it ... You don't look sick? How can you be walking around if your heart doesn't work?" "You look alright, you must be doing well" /6

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz Minimizing what you don't see is not helpful. You don't understand the 'regime' of medicine that I take, the adaptation and transformation I have had to make in the direction of my life ... you have no idea" "It still seen as an old person's disease ..." /7

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz "... the failure of the heart is still seen as something to do with age..." "Well, of course, your heart isn't going to work when you are old" "...just associated with the elderly..." "...clinical trials ... the majority are on those who are older .." /8

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz "... if you are only conducting clinical trials on the elderly that shape policy ... then everyone else falls by the wayside ..." #HeartFailure #clinicaltrials cc @hvanspall @JustinEzekowitz /9

@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz @hvanspall @JustinEzekowitz The @pumpinghearts and @HeartLifeCanada are committed to driving the #QualityOfLife conversation by providing #PatientInsights and #CarerInsights of #HeartFailure because this matters to us. #ItsAboutLife #BeatHF -- Next step: A Global Symposium of QoL in HF /FIN