Can you tell me little bit about your ARVC journey – from your diagnosis to where you are today?

I was 34 years old when I started to have symptoms like palpitations and nearly passing out while exercising. I had multiple tests and saw multiple physicians. I was diagnosed with v-tach, but they didn’t know what my actual diagnosis was. I had an ablation, which unfortunately failed, and also had an ICD placed.

For a few years after that, doctors tried to get me back into my normal life and regular exercise routines, but then I had a shock from my ICD. That prompted additional investigation. Three years later, I was diagnosed with ARVC. Since then, I’ve had two more ablations – one epicardial – and one more shock from my ICD. Like so many, I’ve had to modify my lifestyle and exercise level. I was a runner and cyclist, and now I do a lot of yoga and walking. It took quite a while to adjust to.

What has been the biggest challenge you’ve faced living with ARVC?

Initially, my challenges were exercise and lifestyle related – I didn’t know what I was going to do to relieve stress. The mental health challenges have also been tough. There’s a big mental health element to ARVC – many of us are young at the time we’re diagnosed, and have to make big lifestyle adjustments. That’s definitely been a part of my journey.

What encouragement or advice would you give someone who has just been diagnosed with ARVC?

Keep going – don’t look too far ahead, and know that every day is different. There are some days that even eight years on, I feel tired and feel the side effects of my medication, but you can life a fulfilling life after diagnosis. It’s actually better after diagnosis, because you often have less symptoms once treated – and I’ve made so many friends through this, have gotten involved with advocacy, and have slowed down and appreciated things more. It felt like everything was crashing down in the beginning, but there’s a light at the end of the tunnel.

What do you want other people to know about ARVC?

I want others to know we’re just normal people who happen to have a heart condition! We do have limitations – and it’s important for people to understand and respect them. Don’t judge us based on our limitations – we’re normal people doing our best with our heart conditions. And not all heart conditions happen in older people.