Alexander Jansons Myocarditis UK

Welcome to
Myocarditis UK

Supporting Those Affected by Myocarditis and Promoting Awareness

In memory of Alexander Jansons

About Myocarditis UK

Who We Are

Myocarditis UK (formally The Alexander Jansons Fund) was set up after the death of Alexander Jansons from myocarditis in July 2013, at the age of 18. With little to no information provided on this inflammatory condition affecting the heart, the charity was founded to research the causes, prevention, and cures for myocarditis. The charity has raised over £1,000,000 towards research and to generate greater awareness about this often-hidden condition.

Today, we remain focused on raising awareness, finding answers and saving lives. So, we are delighted to be Shedmasters’ nominated charity for 2025.

"We are truly honoured to be selected as the main charity for this incredible event. This partnership will amplify our shared mission, driving change and creating lasting impact where it's needed most.”

Andy Jansons, Founder of Myocarditis UK

What is Myocarditis?

Myocarditis is an inflammation of the heart muscle (myocardium). Myocarditis can affect the heart muscle and your hearts electrical system, reducing the heart’s ability to pump effectively and 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, or 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.

Common symptoms of myocarditis include:  chest pain or discomfort, or 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, joint pain, or sore throat or swelling in hands, legs, ankles or feet.

Find Out More

Get Involved

Donate Now​

Each donation helps us to support and deliver vital research, educate healthcare professionals and the public, and importantly to fund outreach.

Start Fundraising

We welcome opportunities to get involved in fundraising campaigns for the charity and we also offer fundraising events during the year.

Go Volunteer

Speak to Sarah Baker our Head of Fundraising to find out how you can best volunteer time and expertise to the charity.

Help Raise Awareness

We welcome opportunities to get involved in fundraising campaigns for the charity and we also offer fundraising events during the year.

Stories from the Heart

Marcus White’s case study takes you through the journey of a patient who faced the challenges of diagnosis, treatment, and recovery. By sharing personal accounts, we hope to inspire understanding and support for those affected by this often misunderstood condition.

REad Case Study

Find Help & Information

Whilst many people who get myocarditis do go on to make a full recovery, fast and accurate diagnosis helps patients to get the care they need when they need it. Myocarditis UK, through research, is improving early diagnostic statistics and making significant steps towards a cure.

What We Do

Alexander Jansons Myocarditis UK is the UK’s only dedicated myocarditis charity. This disease affects all ages but specifically the YOUNG. We work tirelessly to raise the money to Find Tomorrows Cures Today.

Raising Awareness

Making Myocarditis a household name and helping the public, general medical practitioners, A and E centres and medical personal to know and understand what to look out for is a key step in identifying, diagnosing, and treating myocarditis. Increased awareness of myocarditis helps us engage with more both the public and corporate arenas to improve our funding and our reach.

Early Diagnosis

The earlier that myocarditis is identified and treated, the better the outcome for the patient. Myocarditis is difficult to diagnose due to the symptoms which present as other ailments (especially in the young) and the more questions we can answer, the closer we are to a cure. We are committed to making myocarditis easier to understand, to diagnose and ultimately, to cure.

Prevention & Treatment

We do know that we are a long way away from finding a cure for myocarditis, but we have made significant progress in identifying blood proteins and specific genetic markers that may make a person more susceptible to myocarditis and helping us to understand why.

For Clinicians

We have come a long way since we began in 2013 where there was hardly any information available on myocarditis and no one in the UK was conducting any formal research into myocarditis along with the possible causes of why some hearts are susceptible and how to treat them.

News & Updates

Stay connected with the latest updates from Myocarditis UK by signing up for our newsletter. We’re committed to keeping you informed about the latest research, events, and support initiatives related to myocarditis. Whether it’s new breakthroughs in treatment, upcoming fundraising activities, or stories from the community, we’ll ensure you never miss an important update. Join us in raising awareness and making a difference in the fight against myocarditis.

Subscribe to our newsletter for updates

Be Part of Our Community

Being part of our charity’s community means more than just making a donation – it’s about joining a collective effort to create lasting change.

As part of our community, you become an integral part of a compassionate network of supporters, volunteers, and advocates working together to make a real difference. Your involvement, whether through giving your time, resources, or simply spreading the word, helps amplify our mission and drives meaningful impact.

Together, we’re building a stronger, more caring world—one action at a time.

Facebook X-twitter Instagram
Quick Links
Contact Us

OUR OFFICE

SAY HELLO

STAY CONNECTED

Charity Registration Number: 1186345. All Rights Reserved.

POWERED BY BIG GUN DIGITAL

Marcus White

“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.

Privacy Overview

This website uses cookies so that we can provide you with the best user experience possible. Cookie information is stored in your browser and performs functions such as recognising you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful.