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Charity funding boosts myocarditis research and patient support

Researchers based at Royal Brompton Hospital are working on a project to help improve understanding of myocarditis. This condition causes inflammation of the heart muscle and in some people can be life threatening, resulting in sudden death.

 

Funding the project is the Alexander Jansons Foundation which was established by the family of Alexander Jansons, aged 18 years who sadly died suddenly of myocarditis in July 2013.

 

Andy Jansons said: “We set up the foundation after a very difficult time for our family. We needed to find out why Alexander died and the more we looked into myocarditis once it was found to be the cause, the more we realised there is little information about the condition and doctors know very little as well.

 

"Royal Brompton Hospital specialists helped confirm Alexander’s diagnosis and the foundation is now funding a research team looking at myocarditis led by cardiology consultant, Dr Sanjay Prasad.”

 

The funding includes two members of the research team: clinical research fellow, Dr Amrit Lota and research nurse, Rebecca Wassall.

[ Zoom ]
From left: Andy Jansons and Patricia Dean ( Alexander Jansons Foundation); Sanjay Prasad, Rebecca Wassall and Amrit Lota (research team)
From left: Andy Jansons and Patricia Dean from Alexander Jansons Foundation with researchers Sanjay Prasad, Rebecca Wassall and Amrit Lota

 

Dr Lota said about the research: “Myocarditis can affect anyone at any age and can have a devastating impact on the lives of young patients and their families. The main current challenges are lack of a specific diagnostic test and limited understanding of how to identify those patients at higher risk of developing problems, such as heart failure or sudden death.

 

"Our research study is looking at patients with acute myocarditis and those with a history of acute myocarditis to help understand why some individuals do well whereas others do badly. We hope this information will allow us to better predict who will need closer monitoring and early treatment due to their higher risk profile or genetic susceptibility. In this way, we hope to reduce the severity of their symptoms and improve long-term outcomes. Our aim is to enable clinicians to provide reassurance where they can but to intervene early where it is needed.”

 

Patients and relatives attending myocarditis information day at Royal Brompton Hospital
Myocarditis patient and relatives information day held at Royal Brompton Hospital in September

In September, the charity funded the first myocarditis information day at Royal Brompton Hospital for patients and relatives.

 

The event was very well attended  with audience questions about the causes of myocarditis, recurrence risk, medications and information on living with the condition such as exercise, lifestyle and psychological impact. 

 
Lucy Daly who attended the event said: “I heard about this event on Facebook. There's not much information out there about myocarditis so this day is fantastic. For me, it has been important to meet other people living with the condition and for us to share experiences.”

 

Rebecca Wassall was pleased with how the day went: “We organised the day as many people who have had myocarditis are concerned about the risk of recurrence and the impact this will have on their daily lives.

 

"Many of our patients are no longer being seen clinically, so being able to have some of their questions answered and meeting other people who have had a similar experience has been very helpful and reduced their anxiety. We hope our research will be able to answer more of their questions in future, particularly around early diagnosis and better management for those patients most at risk of developing acute symptoms.”