The third Beat SCAD conference was held on Saturday 9th June at Queen Elizabeth Hospital Birmingham, where the charity proudly celebrated a hat trick of ‘personal bests’:
1) Increasing the total number of delegates attending (116 vs 110 in 2016 and 88 in 2015), including healthcare professionals from cardiac rehabilitation services.
2) Increasing the number of SCAD survivors together in one place (68 vs 61 in 2016 and 49 in 2015), including five male survivors.
3) Doubling the amount of money previously donated to the research project.
Rebecca Breslin, Trustee Chair, kicked off the day by launching the charity’s new short film Together we will beat SCAD. This was followed by a summary of important milestones achieved since the last conference in November 2016, including publication of the second annual report, updated leaflets and growth of the trustee board.
Rebecca said: ‘Almost half of the SCAD patients attending this year experienced their events in 2017 or 2018, after our last conference. Launching the film at the conference was a perfect time to share the background of how Beat SCAD began, the work the charity is doing and some of the achievements of our amazing group, as well as let the wider community know how they can help Beat SCAD to fulfil our mission to raise awareness, provide support and fund research.’
During the opening presentation, Rebecca thanked the many amazing fundraisers who have completed a variety of challenges, and their supporters who have all contributed to the charity’s next research donation: an incredible £50,000.
Rebecca said: ‘After Beat SCAD’s first research donation of £25,000 in July last year, the charity set about raising the next £25,000 and the trustees agreed to present this amount at the conference. But then there was a flurry of fundraising activity surrounding challenges taking place in May, which meant we could double our donation. The One Community cycle challenge, in particular, enabled us to double our donation. It was an honour to announce the £50,000 donation at the conference and it really is a credit to the dedication and support of our amazing SCAD community.’
Dr David Adlam, Senior Lecturer, Department of Cardiovascular Sciences, University of Leicester, Cardiovascular Research Centre at Glenfield General Hospital, who is leading the research said: ‘This is a brilliant boost – well done and a massive thank you to all. The £50K will be used to continue to support the salary and PhD work of our Clinical Research Fellow, Dr Alice Wood.’
The day continued with a packed agenda of research-focused talks by Dr David Adlam and Dr Alice Wood (SCAD Research Fellow) from Glenfield Hospital, Leicester and Dr Abi Al-Hussaini, Consultant Cardiologist, Chelsea & Westminster Hospital, London.
Dr Adlam delivered a fascinating first talk with his usual charisma and humour, whilst always aiming to explain complex medical content in less complex terms, so it was relatable by all delegates (not an easy task, SCAD is complicated!) As research progresses and theories evolve, the ‘SCAD 101’ content is adjusting accordingly. This time, delegates heard more about the two mechanisms described in the European Position Paper: ‘inside-out’ (is SCAD a tear?) and ‘outside-in’ (is SCAD a disrupted micro-vessel?).
In his second talk, Dr Adlam updated delegates on the advancement of international collaborations including:
- The increasing partnership between SCAD and Fibromuscular Dysplasia (FMD) research to investigate the association between these two overlapping non-atherosclerotic arteriopathies (arteriopathy = disease of the arteries);
- An imaging study to explore the use of Computed Tomography (CT), an x-ray method, in SCAD diagnosis and follow-up;
- A vascular ultrasound study being conducted primarily in Italy (which UK SCAD patients have participated in) investigating vascular structure to identify any evidence of abnormalities that could be connected to SCAD;
- A pregnancy SCAD (P-SCAD) study being conducted at Stanford University, USA which UK patients are participating in via Dr Adlam by completing questionnaires;
- Laboratory studies looking at fibroblasts (the most common cells found in connective tissue);
- Plus the emerging genetics work involving the commencement of a GWAS (genome wide association study), which a Beat SCAD donation is helping to fund.
The heritability of SCAD is one of the key questions arising from SCAD patients, with many concerned that their children or other family members could be at risk. Dr Adlam delved a little deeper into this topic and said that most cases of SCAD appear to be sporadic and, while a few familial cases (eg siblings; mother-daughter) are documented, they are rare (<5% of total cases) and do not currently imply a strong heritability of SCAD.
Dr Adlam closed his talk with a summary of his research strategy, plans for further awareness raising, thanks to all involved and an appeal to the SCAD community to continue their amazing support of the research.
Dr Wood introduced the audience to the PhD work she is embarking on to investigate some of the subgroups, including male SCAD patients and recurrent cases, as well as exploring the role of female hormones in peri- and post-partum cases, and why some patients continue to experience post-SCAD chest pain.
Dr Wood described how the research protocol is evolving to look into patient reported aspects such as intense psychological or physical stress preceding their SCAD and implications regarding coronary spasm, as well as the concept of SCAD being a vulnerability of the artery in combination with some sort of ‘trigger’.
SCAD & FMD
Dr Al-Hussaini’s first presentation focused on the growing association of SCAD and Fibromuscular Dysplasia (FMD), describing what FMD is and how it is diagnosed and managed. Dr Al-Hussaini discussed the SCAD and FMD clinic she has established at Chelsea & Westminster since her move from Leicester last year. The afternoon talk covered pregnancy-related SCAD events and again included information about Dr Al-Hussaini’s specialist clinic comprising a multidisciplinary team aimed at helping SCAD patients make an informed decision about pregnancy after SCAD and offering health review and support pre-conception and during pregnancy.
At the end of both morning and afternoon sessions the three SCAD specialists took questions from the audience and from those unable to attend the conference, who had sent questions in advance.
Sally Bee, Motivational Speaker in Health and Wellbeing, ITV healthy cook, best-selling author of six healthy cookbooks and two-time SCAD Survivor, delivered an inspiring talk about her SCAD experience and shared important pearls of wisdom about recovering from SCAD, including understanding the grief process, listening to your body, being your own advocate and coping if SCAD strikes again.
Trustee and conference organiser, Sarah Coombes said: ‘Sally is a natural story teller with a great story to share. I spoke to some of our delegates after her talk and all said it really resonated with them.‘
Delegates enjoyed networking time in the refreshment breaks and over a long lunch. Many of the SCAD community have become great friends via social media and, for some, the conference was the first opportunity to meet in person.
The trustees were pleased to welcome a number of healthcare professionals as delegates this year. Cardiac rehabilitation nurses attended from Blackpool and Sandwell & West Birmingham, who enjoyed the opportunity to hear research updates and speak with patients about their experiences.
Rebecca said: ‘It’s fantastic that we are starting to welcome more healthcare professionals to our conference. Drs Adlam and Al-Hussaini already do a great deal to raise awareness when attending cardiology conferences. But the Beat SCAD conference adds another level to the experience, because doctors, nurses, paramedics etc. attending will benefit from meeting patients and hearing exactly what we have all been through and how we are trying to change the misconception of what a heart attack patient looks like, so that SCAD is never missed in the future.’
Some delegates joined the Beat SCAD trustees and Dr Adlam at an evening meal after the conference, giving them a further opportunity to network and learn more about SCAD.
On the Sunday, some delegates and their families made the most of a lovely sunny day and joined 1km and 5km guided walks around the University of Birmingham campus. The walk was organised by SCAD survivor Colette Soan and some of her colleagues, who also provided some very welcome tea and cakes after the walk.
Rebecca said: ‘Thank you to everybody involved in the conference, meal and walk this year – it was a fantastic weekend and I think each Beat SCAD conference gets better and better. The SCAD community is amazing, especially my fellow trustees who volunteer so much time and effort to keep pushing forward with our charity mission.’
All presentations were filmed, footage is being edited and will be shared as soon as possible. In the meantime, take a look at the photo gallery below, highlights video and the slide decks. And don’t forget to take a few minutes to watch and share Together we will beat SCAD.