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Patients share experiences of myocarditis at information day

myocarditis event may 207

20 June 2017


Patients and family members came together with heart researchers and clinicians to discuss myocarditis - an inflammatory heart condition that for some people can be life changing.  

 

The event, held on 19 May at Royal Brompton Hospital and funded by the Alexander Jansons Foundation, focused on important issues for patients with myocarditis and their families. The programme included: diagnosis, treatment, lifestyle and exercise; how research may make a difference to future patient care; psychological impact and managing stress.


One major challenge for patients is the lack of opportunity to meet and share their experiences of living with the condition. The programme included a discussion led by research nurse, Rebecca Wassall, and two young participants, Matthew and Chris, on their experience of living with myocarditis. They talked about what it had been like to receive their diagnosis, including the initial symptoms and how this affected them, as well as how they live with the possibility of reoccurrence.     


Participant, Jurij Zykov was enthusiastic about the event, saying:"It was good to see that I am not alone in this struggle. Others are going through the same challenges and we can help one another."


There was also much interest about the myocarditis research at Royal Brompton Hospital, funded by Alexander Jansons Foundation and British Heart Foundation. This study aims to improve early diagnosis and how to predict who needs closer monitoring and early treatment. It is also looking at how diagnosis affects patients psychologically to identify need for psychological support - highlighted at the event as an important issue for people with myocarditis. 


Stephanie Newborn and her husband found the event enlightening. Stephanie said: “It was fantastic to hear from different speakers covering a range of topics, and we felt much more informed as there is such little information on the internet.

 

“We really appreciated Dr Prasad and the team answering our questions. It was reassuring to know that this highly skilled team are spending time conducting research into myocarditis.”

 

Consultant cardiologist, Sanjay Prasad, summed up why the event was also important to his team: “Our research team really valued hearing patients and carers discuss what they most valued as key priorities for improving current myocarditis care. Listening to their experiences is essential in helping guide the future direction of our research; making sure we focus on issues that are important to patients.” 

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