Rebecca Breslin, 36, from Melton Mowbray in Leicestershire, was struck down in March 2012 by spontaneous coronary artery dissection (SCAD) – a condition that results from an abnormality in the coronary artery causing the lining of the wall to tear resulting in a heart attack. Despite her diagnosis, her condition is so rare that cardiologists were unable to answer many of her questions and so she took to the internet to find more information.

She discovered just one research project in the world into the condition run by the Mayo Clinic in Massachusetts, USA.

As part of the US study, the research team were trying to establish a virtual registry of SCAD patients. Keen to share her case, Rebecca joined this registry but also saw the potential for other researchers to collaborate with this study, so she also began searching for other British female patients with the hope of establishing a project here in the UK.

Thanks to her efforts in identifying more than 100 patients from the UK, and a further 80 internationally, a grant from the British Heart Foundation (BHF) is now funding a two year study into the condition. The study will be undertaken by a team of researchers at the NIHR Leicester Cardiovascular Biomedical Research Unit, part of the University of Leicester, based at Glenfield Hospital.

Rebecca said: “This is a great example of people power. SCAD is a devastating condition; some sufferers have been left with heart failure and in other cases, sadly it’s proven fatal. We need answers as to why this happens to people and we hope this project will deliver on that. I’m delighted that we as patients have been able to get this off the ground.”

Dr David Adlam, cardiologist at Leicester’s Hospitals and lead researcher for the project, added: “This situation is unique. We usually struggle to find patients for our studies but this is a highly motivated group of patients who are understandably committed to finding out why this has happened to them and what it means for them and other people in the future.

“What we currently know about SCAD is largely anecdotal. The grant from the BHF will allow us to provide information based on solid science to the medical community and patients, improving diagnosis and management of the condition for patients in the future.”

SCAD is known to affect mostly women and in the majority of cases occurs in women under 50 who are otherwise healthy. In a significant number of cases, the condition occurs around the time of pregnancy or recently after giving birth.

Senior Cardiac Nurse at the BHF, Maureen Talbot explains: “Thankfully this condition is rare. But it can have devastating consequences – particularly in younger women who’ve probably never thought about their heart health before. We hope this research will help to understand this condition better, so we can develop better treatments for it and perhaps even prevent it in the first place.

“In the meantime, if you’re a woman and you’re worried or curious about your heart health, you can visit our Women’s Room – a dedicated online hub full of practical information and where you can talk to other women, just like you. Just visit www.bhf.org.uk/women.”

Patients with this condition can also register their interest in the research program on the SCAD-UK/EU website http://scad.lcbru.le.ac.uk/ or visit http://www.bhf.org.uk/publications/view-publication.aspx?ps=1002532 for further information on SCAD.