When will World Myocarditis Day be celebrated? August 17th of each calendar year.
What is World Myocarditis Day? Those affected by myocarditis are as diverse as the symptoms of myocarditis…which is what makes this so tricky to diagnose! But, with more awareness of the symptoms and knowing what questions to ask, we have saved lives and will continue to do so as we increase awareness of what it is amongst both the public and the medical sectors.
How should World Myocarditis Day be celebrated or observed? There are no rules to celebrating myocarditis – just do it! Many people will use this day to remember loved ones who have passed due to myocarditis or celebrate those who have made a full recovery. In the past, we have celebrated this with football matches, cake sales, cooking classes, dance parties, marathons …in short, the list is as diverse as those affected by myocarditis. We believe that each life saved is worth celebrating and we chose to have events thats showcase fun, vitality and energy – something that is taken from those suffering with it and sadly, from those who don’t recover at all. Our charity uses the West Ham colours as Alexander was a huge West Ham fan so bonus points to any celebrations showcasing the colours but really, we just want people to talk about it and to understand that heart health affects everyone – not just “old people.”
Why was World Myocarditis Day created? Alexander Jansons died suddenly from heart failure due to undiagnosed myocarditis. He was 18. At the time, there was little to no information available on myocarditis at all and it was not being researched in the UK at all. The Jansons family started the Myocarditis UK charity in 2013 vowing that no one else should suffer as they did with no answers to their questions.
Myocarditis is responsible for the sudden death of one young adult each week in the UK.
Myocarditis is the 3rd leading cause of sudden death amongst young adults in the developed world.
Myocarditis, currently considered a rare heart condition, but the latest research is proving it to be more prevalent than previously thought – it was so under researched that many in the medical profession didn’t and still dont know what it is, making many of these cases simply being labelled as Sudden Death Syndrome. Myocarditis can affect any one of any age but it is is statistically more prevalent in young men, especially healthy young men. Myocarditis is one of the leading causes of athletes who collapse during sporting events.
The charity has been going for ten years and has achieved incredible results. The first ever myocarditis research program in the UK was started by them and this research program now has cohorts based in the Netherlands, Germany and the United States. Alexander Jansons Myocarditis UK played a pivotal part in UK government advice to all general healthcare practitioners in the UK post COVID and is currently the leader in research determining the links between genetic markers and myocarditis. The charity has also funded research into stem cell technology that allows genetic testing to be done on stem cell hearts with all the characteristic of a human hearts.
We are aware that there are world heart days but they all focus on cardiovascular heart health and more well know heart conditions but with myocarditis being a rare condition, general heart days do not draw attention to this. We believe that it deserves its own special day as being aware of it saves lives.
Who created this day? This day was created by Sarah Baker in 2024.