WHEN the weather is warm, many of us will notice our hands, ankles and feet start to swell a little more than normal.
Most of the time, this is nothing to worry about, but it can be a sign of myocarditis – a condition that kills one young person suddenly every week in the UK.
Worryingly though, most Brits wouldn’t see a doctor if they noticed such symptoms, according to research.
Andy Jansons, chair of the charity Myocarditis UK whose son Alexander died from the condition aged 18, tells Sun Health: “It’s so important to be aware of the symptoms and know that it’s OK to seek medical help if you’re experiencing them.”
Myocarditis is inflammation of the heart muscle which reduces the heart’s ability to pump effectively over time.
It can cause rapid or abnormal heart rhythms, but this isn’t always noticeable.
Symptoms generally can be subtle and sometimes won’t be present at all.
But left untreated, the condition can be deadly. In the UK, one young person dies suddenly each week due to undiagnosed myocarditis.
“In young adults, myocarditis is among the most common causes of sudden cardiac death,” Sindy Jodar, senior cardiac nurse at the British Heart Foundation, says.
“There were also 632 hospital admissions with myocarditis as the primary diagnosis in England in 2023/24.”
It can affect anyone at any age, though it is most prevalent in men aged 15 to 25.
“Young adults, especially fit and healthy males, are more at risk – although we still don’t fully know why,” Andy says.
“Myocarditis is often the cause of on-field related incidents where sportsmen collapse.”
It is usually related to a recent viral infection, such as flu or Covid.
The virus may have gone, but the immune system overreacts, causing inflammation that can persist in the heart.
“Other causes include bacterial infections, like a sore throat or chest infection, fungal infections like athlete’s foot, and, rarely, reactions to medicines and vaccines,” Sindy says.
“People with autoimmune diseases like lupus may be more at risk, as may drug users, with myocarditis occurring in reaction to harmful substances including cocaine.”
Early intervention is crucial as it can be only a matter of weeks between the onset of symptoms and development of heart failure
Sindy Jodar
Because it is commonly caused by a virus, people with myocarditis may first experience flu-like symptoms.
“This includes but is not limited to aching muscles, fatigue, a sore throat and shortness of breath,” Andy says.
“Many patients mention chest pain that comes and goes, and pain along their left side – especially when resting or lying down – as well as heart palpitations.
“Some also report swelling in their hands, ankles and feet.”
Sindy adds: “Inflammation can cause extra heartbeats, which feel like a flutter in the chest, and if several of these extra heartbeats run together, it can cause light-headedness.”
Alexander Jansons’ story
ALEXANDER Jansons died from myocarditis in July 2013, at the age of 18.
He loved life and in particular, enjoyed sport, music, family and his mates.
His biggest passion was for football. He represented his school sides and numerous local teams, making so many friends along the way.
Alexander’s school football team at John Hampden Grammar School actually won the English Schools national title one year, technically making them the best school football team in England, and he played a major role in that.
Another major passion for Alexander was the gym, where he would spend untold hours working on his health and fitness.
A mainstay in Alexander’s life was attending West Ham games with his family every other weekend at Upton Park, something that produced some memorable and unbelievable days out.
All of this he carried forward to Sussex University, where he studied for a mathematics degree and played football for the first eleven, loving every second of the student lifestyle.
Everyone who came into contact with Alexander along the way provides the same feedback – that he was a caring, kind, thoughtful and funny soul who would have helped anyone out in any situation.
Source: Myocarditis UK
A report last year found 82 per cent of people wouldn’t see a GP or nurse if they experienced any of these symptoms.
And 27 per cent had never heard of myocarditis in the first place.
Sindy says: “While the majority of people recover completely, early intervention is crucial when treating myocarditis as, in some cases, it can be only a matter of weeks between the onset of symptoms and development of heart failure.
‘It can turn problematic very suddenly’
“Myocarditis can irreversibly scar the heart muscle, which then becomes enlarged and weaker – this is called dilated cardiomyopathy and it can lead to heart failure.
“In very extreme cases where there is severe damage to the heart, people may be considered for a heart transplant.”
Andy adds: “Myocarditis can turn problematic very suddenly.
“The earlier that diagnosis is made, the sooner patients can be given medication to help alleviate the strain on the heart, as well as guidance on what lifestyle changes to make should that be necessary.
“Early detection and treatment can lower the risk of long-term complications or fatalities from the condition.
“With increased awareness, members of the public are better informed to monitor their own health and ask the correct questions of their GP if they are concerned.
“Making myocarditis a household name and helping the public, general medical practitioners, A&E centres and medical personnel to know and understand what to look out for, is a key step in identifying, diagnosing, and treating myocarditis effectively.”
If you think you have symptoms of myocarditis, call 111 or speak to your GP.
But ring 999 immediately if your chest pain feels tight or heavy, lasts more than 15 minutes, spreads to the arms, back, neck and jaw and is accompanied by shortness of breath and/or sickness.
How myocarditis is diagnosed and treated
MYOCARDITIS is inflammation of the heart muscle, usually following a virus.
It reduces the heart’s ability to pump effectively, causing rapid or abnormal heart rhythms (arrhythmias).
This inflammation enlarges and weakens the heart, creates scar tissue (fibrosis) and forces it to work harder to circulate blood and oxygen throughout the body.
Myocarditis can affect anyone, at any age, and can occur in people with no history of previous illness.
Most commonly, patients experience chest pain, breathlessness or have a heart rhythm abnormality that makes them collapse or feel as though they are going to collapse.
This is often but not always after a viral infection or an adverse drug reaction.
Other common symptoms of myocarditis include:
- A feeling of tightness in the chest
- Shortness of breath (either at rest or when active, or in certain positions, such as lying down)
- Unusual tiredness
- Palpitations (like your heart is fluttering, racing, or pounding)
- An irregular heartbeat
- Feeling light-headed or fainting
- Recent flu-like symptoms (such as high temperature, headaches, body aches, or joint pain)
- A sore throat or swelling in hands, legs, ankles or feet.
To diagnose myocarditis, a doctor will look at any recent illnesses you may have had, your exposure to certain drugs and other risk factors, like whether you’ve recently had a baby.
You may also have tests, like an ECG, chest X-ray or blood tests.
Treatment will depend on your symptoms and the cause of them, but may include painkillers, antibiotics and rest.
Most people will have one episode of myocarditis and will get better with rest, medication and avoiding high intensity exercise while their heart recovers.
But for some people, the condition can last longer or return, so doctors will check your progress closely.
If your symptoms return, you should see a doctor or phone 111.
Source: Myocarditis UK and the British Heart Foundation
