Beat SCAD’s passionate and persistent quest for answers for the spontaneous coronary artery dissection community
By Charlotte Cooper
Rare Revolution had the pleasure of speaking to Karen Rockell, who was diagnosed with spontaneous coronary artery dissection (SCAD)—a rare and under-diagnosed heart condition—in 2010 at the age of 55. At the time, Karen was told that her condition was so rare it was likely she would never meet anyone else with SCAD. In fact, the condition was so rare that none of her healthcare team had any idea about what treatments they could offer her, or even where to signpost her to for advice and support. Determined to not feel alone in her journey, Karen took to social media in search of support groups for heart conditions in general. By the end of 2012, Karen had found two other individuals living with SCAD, including Rebecca Breslin (Becks) who would quickly become a significant figure to drive the quest for answers for the entire SCAD community
Karen shares with us the inspiring story of how a UK SCAD research project and SCAD charity came to fruition with the help of interventional cardiologist and researcher, Dr Adlam; the collaboration and determination of the SCAD community to fund research and support the community; and insights on research in the pipeline that is giving new-found hope to affected families around the world
Establishing the UK SCAD research project
When Karen met Becks through a social media forum, she had no idea of the impact Becks would soon have in bringing about a UK SCAD research project. Becks lived in Leicestershire, home to a Biomedical Research Centre. After discussing the matter with Karen and others in the forum, in 2013 Becks—who suffered a heart attack caused by SCAD in 2012 at the age of 34—contacted Dr David Adlam, associate professor in acute and interventional cardiology at the University of Leicester and interventional cardiologist at University Hospitals of Leicester NHS Trust.
Dr Adlam first delved into SCAD in 2010 with an article titled Management of Spontaneous Coronary Artery Dissection in the Primary Percutaneous Coronary Intervention Era, in the Journal of Invasive Cardiology.
With only a small section on the Mayo Clinic website about SCAD, Becks initially spoke with Dr Adlam about being put in touch with other global researchers who may have more information about the underlying causes and prognosis of SCAD. To the disappointment of Becks and the patient group, Dr Adlam told Becks he knew of no such further research being carried out on the condition.
Becks heard that a paper published on the statistical mortality rate of those with SCAD had meant researchers and healthcare professionals did not associate SCAD with a “living community”. Determined to change this, Becks went back to Dr Adlam and discussed the need for establishing a UK research project that would provide the SCAD community with the answers they deserved. This set in motion a patient-led campaign to find more individuals living with SCAD who would be willing to share their story with the British Heart Foundation, who had agreed to fund a research project if enough patients came forward. This campaign was successful, with around 100 affected individuals willing to participate.
“At this point, everyone started to realise that yes, it is rare, but there were many more people affected who were still alive than we had been told,” Karen explains.
In 2013 Dr Adlam, in collaboration with SCAD survivors in the UK and Ireland, launched the SCAD UK research initiative and became its clinical director. The initiative was supported by the British Cardiovascular Society and the British Cardiovascular Intervention Society. Karen says the research was slow to start, and they quickly realised it was not going to be enough to provide the answers the community needed. “At that point, it was decided that we wanted to raise more money, and that’s one of the reasons we established the charity,” Karen explains.
Establishing the Beat SCAD charity to fund research for SCAD UK
In 2015 Becks, Debbie Oliver and Karen co-founded the volunteer- and patient-led charity Beat SCAD, with a threefold mission:
- to continue the much-needed efforts to raise awareness of SCAD within the public and healthcare setting
- to provide support to individuals and families affected by SCAD
- to raise funds for the UK research now established at the Leicester Biomedical Research Centre
“The Beat SCAD patient charity has been doing a huge amount of work over the last few years. […] We’re letting people know about this condition across the spectrum of health expertise.” – Dr Adlam in the Not Your Usual Heart Attack podcast.
“There are a number of resources now, which is a great advancement over the last few years and, again, a testimony to the work done by Beat SCAD and the patient advocacy group,” Dr Adlam explains in the podcast. Dr Adlam and the Beat SCAD community are also proud to announce that SCAD recently made its first appearance in international guidelines in the European NSTEMI guidance. An NSTEMI (non-ST-elevation myocardial infarction) is a type of heart attack that happens when the heart needs more oxygen than it’s getting.
Thanks to the tremendous hard work and fundraising of Beat SCAD, new research which has largely focused on patient-reported outcomes has uncovered a greater understanding of symptomology, the diagnostic journey and the emotional strain individuals feel after surviving SCAD with fears of recurrence. Research has also uncovered new awareness for the prevalence of SCAD: “We know now that SCAD can affect all ages. I know a girl with SCAD who is 17, and I know of another lady who is 87. We also know that 90% of those affected are female,” Karen explains.
Karen shares that there is ongoing research into preventing the recurrence of SCAD and identifying the people that could have SCAD in the future, through for example, genetic causes or environmental factors. Research into the connection between individuals who are pregnant or have recently given birth and have had a SCAD is also a top priority for researchers. “One of the first things identified in research was that hormones seem to play a key part,” Karen explains.
Research has have identified a high prevalence of extra-coronary fibromuscular dysplasia (FMD)—a condition that causes narrowing and enlargement of the arteries—in patients with SCAD, but the data demand caution in equating the two.1
Karen also tells us that thanks to awareness efforts by Beat SCAD and other patient groups and SCAD clinicians across the world, SCAD has now been given its own code in the eleventh revision of the International Classification of Diseases (ICD-11). ICD-11 is a digital resource from the World Health Organization that provides a common language for health professionals across the world to share standardised information about health and causes of death. SCAD having its own code is a big step forward in terms of capturing its prevalence and helping with the documentation of research.
Karen and the rest of the Beat SCAD community are proud to be part of a national and global collaboration which pulls together expertise and new understandings for a diversity of research pathways. Karen explains that since the launch of the UK research project, Dr Adlam has gone on to launch the European SCAD Study Group, supported by the Association for Acute CardioVascular Care (ACVC), a registered branch of the European Society of Cardiology.
“We don’t have all of the information at the moment on the causes of SCAD, and that’s a very key aspect and element of rare disease work—in that much more research is needed. And that’s one of the reasons why you need to have national centres to coordinate that and to bring together patients and expertise so that you can advance understanding of this condition.” – Dr Adlam in the Not Your Usual Heart Attack podcast.
The Leicester Cardiovascular Biomedical Research Unit was awarded a grant by the British Heart Foundation in January 2014, which allowed assignment of a dedicated research fellow to SCAD-related research. The centre is now known as the leading centre of excellence for SCAD in the UK. Further funding support has been awarded by the NIHR (National Institute for Health and Care Research) Rare Diseases Translational Research Collaboration and Beat SCAD.
A note from Rare Revolution
It is wonderful to see the collaborative efforts of the SCAD patient community, whose commitment has changed the future path for those affected by SCAD now and those who will be affected in the future. The achievements made possible because of the existence of Beat SCAD—established by just three individuals determined to find answers—truly highlights how big achievements are possible, even with the smallest of teams. We admire their passion and persistence, which has led to such positive outcomes in terms of new understandings uncovered, and we are keen to follow up with Karen and the Beat SCAD community in the future and learn where their journey has taken them.
[1] Adlam D, Alfonso F, Maas A, Vrints C; Writing Committee. European Society of Cardiology, acute cardiovascular care association, SCAD study group: a position paper on spontaneous coronary artery dissection. Eur Heart J. 2018;39(36):3353-3368. doi:10.1093/eurheartj/ehy080
Web: beatscad.org.uk
Facebook: facebook.com/beatscaduk
Instagram: @beatscad
Twitter: @beatscaduk
Not Your Usual Heart Attack podcast: beatscad.org.uk/world-heart-day-podcast-raises-awareness-of-scad
