Last Saturday, I spent the day at the Cardiomyopathy UK National Conference (my first ever)! Its aim is to help people with Cardiomyopathy and their families, by sharing personal experiences and having access to information from experts. What a fantastic event, organised by a wonderful charity, giving support and comfort to so many, who can easily feel isolated and alone. I learnt so much in one day and came away feeling empowered.
'Knowledge is key' was the stand out phrase from the day. The more you understand your condition, the less you fear it - so true. You can then begin to take control of your illness and learn how to manage it.
One speaker in particular, gave a speech that resonated with everyone in the room. Although we didn't all have the same condition, and even those that do are affected in different ways - there was a feeling of being united, which moved us all in that moment. Her doctor told her something that I feel needs sharing. It's probably common sense, but I wish I was told before I left hospital. One third of what you are dealing with is your condition, another third is your medication, the final third is the mental anxieties that come with it.
This assured me that my project is worthwhile, to try and combat those anxieties by sharing information, providing support and building invaluable networks.
It also confirmed people need to be made more aware of the symptoms. A study of sudden deaths from my condition showed, out of 74 individuals 51.4% had shown symptoms prior. This reminds me how lucky I was - on a couple of occasions I experienced palpitations during exercise, which I just ignored. In hindsight, I was probably having an arrhythmia. PLEASE GO TO THE DOCTOR if you encounter this. It is not worth the risk!
GPs also need to be made more aware of the symptoms, to help make sure things like this aren't missed. There is still so much more to learn about my condition, and the reality is, not enough people have been diagnosed for them to be studied.
This makes me all the more determined to drive my project on, to raise much needed awareness and hopefully, prevent more sudden deaths.