"My name is Steffi and I live in Surrey. I was diagnosed with Hypertrophic Obstructive Cardiomyopathy (HOCM) when I was 18 years old. Originally I was misdiagnosed with Asthma but after multiple tests, the hospital didn't believe that this was the reason behind my fatigue as I started to get unbearable chest pain, tightness and light-headedness, and I could feel an abnormal heart rhythm from time to time. I had an ECG where they spotted an irregularity with my heartbeat and was given an echocardiogram appointment for 2 days later. This resulted in finding out I had HOCM, followed up by an immediate admission to hospital and a lengthy week stay, where it was decided I would need an ICD (Implantable Cardioverter Defibrillator). This was 4 days after admission.
I struggled with the diagnosis at first emotionally and physically as I had gone from being very active, optimistic and confident, to ashamed, tired and drained. It was hard because I had never heard of the condition and felt rubbish and exhausted all the time. I had to get my head around taking tablets every day for the rest of my life, being monitored and frequent hospital visits quite quickly, but I managed with the support of my nurses, family & the charity.
However it didn’t stop there, after I was diagnosed we found out that my mum also had the condition, and my brother was at risk of it - which is horrible because you don’t want anyone to go through what you are experiencing. I had to stop certain activities and even put off going to Uni as I wanted to be near home. A lot of my friends didn’t know what an ICD was or why I would have good or bad days but they soon started to learn alongside me. This made my life easier by understanding the condition, how it is caused and more information surrounding the topic.
Every year I undergo a transplant assessment where I have multiple tests & conversations with medical staff. Talking about having a new heart over the next few years is scary but for now I am living life to the full by travelling, meeting new people and challenging myself (sensibly). I have had such wonderful support from my family, friends and boyfriend, as well as Cardiomyopathy UK. Being part of this panel is such a privilege and I look forward to working with many more young people in the years to come!"