Welcome to Myocarditis UK
Supporting Those Affected by Myocarditis and Promoting Awareness
Introduction to 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.”
What is Myocarditis?
Understanding 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.
How You Can Help
Get Involved
There are many different ways you can get involved and support Myocarditis UK:
- Donate Now: each donation helps us to support and deliver vital research, educate healthcare professionals and the public, and importantly to fund outreach.
Donate now » - Start Fundraising: we welcome opportunities to get involved in fundraising campaigns for the charity and we also offer fundraising events during the year.
Start Fundraising » - Go Volunteer: Speak to Sarah Baker our Head of Fundraising to find out how you can best volunteer time and expertise to the charity.
Go Volunteer » - Help Raise Awareness: From sharing educational materials from our website to participating in awareness campaigns, this is an easy way to get involved today.
Help Raise Awareness »
Real Stories
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.
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 Ame 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.
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.
READ MOREResources and Support
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.
Provide links to valuable resources:
- Information about myocarditis diagnosis and treatment.
- Support services for patients and families (e.g., helplines, counselling).
- Educational articles or video content on heart health and managing chronic conditions.
News and Updates
Stay Updated
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.
Join the Community
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.
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