When I was 18, I was a student at John Hampden Grammar. Like all 18-year-olds, I was on the verge of starting a new chapter in my life when, out of the blue, one of my good friends died.

Alexander Jansons died suddenly and unexpectedly – the shockwaves of this tragedy spread amongst his friends, his peers, and the school. As you can imagine, there were so many questions – way more questions than there were answers  – but it was then, for the first time like so many others, I heard the term “myocarditis.”

All of us who were affected by Alex’s death researched this foreign term and together with Andy’s (Alex’s dad) determination to start telling the world about myocarditis and its symptoms we became aware of this rare heart condition. The years passed and before I knew it, I was 24 and working. I can’t remember exactly when it was, but at some point, I developed a fever – nothing exotic or special – however, the aftereffects really lingered.

I was tired all the time with intermittent chest pains and couldn’t quite seem to shake it and soon I was feeling continuously poorly. No fever but just unwell and went to stay with my parents for a while. It was here, one night with severe chest pains, that my parents rushed me to hospital. The hospital ran a few checks and although I told them that I was experiencing severe chest pains, they assured me I was ok, that it was probably a muscular injury and sent me home.

A few nights later, maybe a week or so, I woke up in the night with terrible chest pains. My then partner, Lauren, dialled 999 in a panic and they sent a team out who ran ECG test. The ECG picked up an irregularity with my heart and I was rushed to hospital. The Dr’s did a few tests and were about to send me home when I remembered Alex’s story. I realised with frightening clarity that my symptoms were exactly the same as what Alex’s had been. I insisted on having more tests done and told the Dr’s about Alex’s case, the research that the Alexander Jansons Foundation* had just started to reveal and that I suspected myocarditis. I was then given a blood test where they checked specifically, amongst other things, my Troponin** levels.

I don’t remember what the exact numbers were to indicate healthy or not, but my Troponin levels were off the chart! The Drs did some scans and it was confirmed – I had myocarditis. Pericarditis to be exact (which is a form of myocarditis).

I was immediately ordered to stop all exercise and put on an intensive dose of Beta Blockers and other medication for the next few months. I firmly believe that had I not been aware of Alex’s story, of myocarditis and of its symptoms, I would have died that night or shortly after.

I am now 29, in the best shape of my life and so immensely grateful to the Jansons Family. They took an unspeakable tragedy and found a way to make a positive outcome. I don’t know how many lives have been saved by the charity – no one will probably ever know – but they saved mine.

I am one of the lucky ones. I hear so many stories of people who take much longer to recover and I have made a full recovery with no damage to my heart. I do have scans annually to monitor my heart health, but yes, I am definitely lucky to be here today.

– Marcus White –

*Alexander Jansons Foundation was the name under which the charity was founded but was changed when the charity merged with Cardiomyopathy UK and again to its current name Alexander Jansons Myocarditis UK when the charity rebranded in 2019.

**Troponin is an enzyme found in the blood when the heart is under attack or inflamed in any way. Certain levels are acceptable as this enzyme is released when our immune system is doing its job however, high levels indicate that the heart could be in danger.