The Alexander Jansons Myocarditis Fund has pledged a minimum of £80,000 per year to fund research into the causes, prevention and cures for Myocarditis and ultimately to produce a research paper to be published in medical journals. The knowledge gained from the research will add to the body of existing knowledge and increase the understanding of the Myocarditis disease and how it can be prevented and cured, therefore saving lives in the future.
What is Myocarditis:
- An inflammatory condition affecting the heart.
- Usually due to a virus but increasingly is recognized to have a genetic basis.
- This disease may affect individuals of all ages although it is most frequent in the YOUNG.
- Causes heart-failure, sudden death and major rhythm disturbances.
- It appears to do this through an effect on the body’s immune system.
- Much is still not understood about the condition including how common it is and why a virus causes the condition.
How many People Does Myocarditis Affect in the UK Each Year ?
Within the UK every year, several thousand patients are diagnosed with this condition and one of the tragic consequences is that it can affect, otherwise very healthy people.
How does Myocarditis present?
Patients usually present with a combination of chest pain and or shortness of breath as the heart function deteriorates. They may also develop rhythm disturbances, which in some cases can be serious and lethal. Approximately 1/3 of patients will go on to recover, 1/3 of patients will have some dysfunction that is stable over a period of time and 1/3 of patients will show progressive deterioration. The Foundation has been set up to gain insights into the scale of this problem and potential mechanisms. Royal Brompton Hospital aims to look at early markers to guide who may be at risk of developing the condition or of adverse outcomes.
- To gain insight into the incidence and prevalence of myocarditis in the UK
- To understand how myocarditis is presently diagnosed assessed and treated within the UK
- To establish an initial pan-London outcomes Registry for myocarditis with subsequent national roll-out if the pilot is successful
- To biobank patients with myocarditis to determine risk markers (including genetic) of adverse outcome at 3 years.
- To understand if certain candidate genes predispose to greater adverse remodeling after disease onset.