Life with LQTS and LVNC

Life with LQTS and LVNC

by Abi Edwards

October 2018, aged 14 and asymptomatic – I was taken to a CRY screening as a precautionary check by my mum at St George’s Hospital. Little did I know that that test would be the beginning of a whole new journey in my life. I was told that they had picked up an abnormality and they thought it would be LQTS, something I had never heard of nor had I expected when I went in for the screening. I was then referred to the Royal Brompton for further tests such as ECGs and echos and it was confirmed that I had LQTS. I was then prescribed Bisoprolol and continuous check-ups at the Brompton.

Following an MRI around a year later, I was found to have Left-Ventricular non-compaction alongside the LQTS. This meant that I was now under two clinics at the Brompton, Cardiology and Cardiomyopathy, both of which were incredibly supportive.

My worries further expanded when I discovered other family members had the LQT gene but it didn’t present itself. While this made me feel more alienated as I felt like it was only me who had these conditions, I was determined not to let it beat me and I continued taking it in my stride and accepting the new journey my life had taken me onto.

Whilst both of these came as a huge shock to me, I understood that this was how things were going to be and I learnt to take it in my stride and make the most of what I can do rather than what my conditions prevent me from doing.

Also, being so young when diagnosed, I was eager to understand more about cardiac conditions, particularly my own, and so I turned to CRY and the myheart network to use the resources they provided to both cope and learn about my conditions.

My life will never be the same as it used to be and I may have extra precautions than the average person. However, this is what makes me me, and I am using my own experiences to help others going through something similar as I know first-hand how daunting it can be.

Abi at the 2019 CRY Heart of London Bridges Walk

CRY has saved my life and I could never be more grateful. This is why I took part in the 2019 Heart of London Bridges Walk to fund raise for CRY and see just how many people they have also had an impact on – this in particular made me realise I am not alone.

I am looking forward to a bright future and even further acceptance and understanding of my conditions. For everyone with cardiac conditions, we are not alone.