SCAD patient uses art for health and wellbeing – and ‘gives back’ to the SCAD community

Two-time SCAD patient Giedre Calverley has been using art to maintain her health and wellbeing since her first SCAD in 2018. In February this year, she decided to help other SCAD patients do the same.

She told us that after her second SCAD in January she attended a webinar where Professor Neil Greenberg talked about occupational stress in the caring professions and measures that have been proved to help prevent lasting negative effects on health.

“The idea of psychological PPE – having a plan that includes personally effective things for staying well, ready for possible stresses in the future, and peer-support groups – having a group of people who share the same experience and help each other with problem-solving and encouragement – gave me the idea to start a creative group with SCAD ‘survivors’,” Geidre explains.

“I experienced the tremendous supportive power of a good peer group in my professional life over the years, and wondered if I could combine both elements that are instrumental in my own health and wellbeing, for the benefit of others – my peers with SCAD experience. I was keen to make connection with other human beings and support each other by sharing creativity together.”

So in February, she invited members of the SCAD UK & Ireland Survivors Facebook group to sign up for weekly creative and conversation sessions on Zoom.

She told the group: “The purpose is to have a peer group where we could ‘make sense’ of changes in our lives caused by SCAD in a safe, facilitated creative space. Similarly to peer groups in caring professions where people deal with difficult or even traumatic events by mutual reflection and support, this could be a confidential survivors’ group that helps with the same.”

She added: “What qualifies me? I’m a doctor who worked in the NHS for 15 years before my first SCAD event, obtained a Lifestyle Medicine Physician Diploma afterwards and started using visual art (with no previous experience or special ability) for my own healing with very positive results. I recently had my second SCAD and with that – a strong desire to connect with my SCAD peers in a positive, supportive and meaningful way.”

Beat SCAD Trustee, Sarah Coombes said, “Initiatives like this can be incredibly valuable for the recovery of SCAD patients. The chance to tell your story in a safe space. To be heard by others who know what you are going through. To be able share your experiences of life after a major health event and perhaps learn to put what happened into some kind of perspective. And, ultimately, to gain self-awareness and insight – it’s really powerful.”

Beat SCAD is very grateful to Giedre for sharing her expertise and encourage any SCAD patients who feel they could help to get in touch as there are many different ways that you can volunteer to support the work of Beat SCAD.

“Remember, it’s important to focus on healing ourselves first,” said Sarah, “but once we feel strong enough, giving something back to the community that has supported us can be a wonderful experience that further strengthens our own recovery as well as paying forward the support we received to help those who come after us.”

Looking after mental wellbeing after SCAD is just as important as healing physically.  Click here for further resources. Do consider requesting a SCAD Buddy if you would like to have someone to talk to one-to-one, someone who ‘gets’ what you are going through.

To see some of Giedre’s art, have a look on Instagram giedr_art and see Healing_scad_h_art for some of the art created by the SCAD patient group.

Giedre had a great response to her initial classes and if you’re interested in finding out more, please complete Giedre’s form here. If there is enough interest Giedre plans to hold more workshops.

Research study looks at connective tissue and inflammation in SCAD patients

Connective tissue abnormalities, coronary inflammation and coronary artery Fibromuscular Dysplasia (FMD) have all been suggested as potential causes of SCAD, but have not, until now, been systematically assessed.

This recently published paper, Vascular histopathology and connective tissue ultrastructure in spontaneous coronary artery dissection: pathophysiological and clinical implications is the largest study so far looking at SCAD coronary histopathology (the changes in tissues caused by disease). It is also the first systematic assessment of skin collagen ultrastructure, which is the fine structure that can only be seen at very high magnification, in SCAD patients.

Connective tissue

Although SCAD is associated with hereditary connective tissue disorders in a small number of cases and some SCAD patients display features of hypermobility, leading to theories that connective tissue abnormalities may be a cause of SCAD, the researchers didn’t find general differences between the skin connective tissue of SCAD patients and healthy volunteers. When looking at the elastin (a protein-forming the main constituent of elastic connective tissue, found especially in the dermis of the skin), the study found the suggestion of some subtle features of elastin damage might be different between healthy volunteers and SCAD survivors. The authors say these findings are helpful in identifying theories they can investigate further. 

These findings suggest that any connective tissue abnormalities common to patients with SCAD who do not have hereditary connective tissue disorders are probably subtle, transient or localised to the coronary arteries.

Inflammation

The authors conclude that in terms of inflammation, it is likely that SCAD causes an inflammatory response in the coronary artery wall as the body tries to heal itself, rather than inflammation being a cause of SCAD.

FMD

An association between SCAD and FMD in non-coronary arterial beds is well established but it is less clear if the microscopic changes in the arrangements of cells in the arterial wall of patients with FMD are also found in the coronary arteries of patients with SCAD. This study did not find evidence that changes like those described in FMD commonly occur in the coronary arteries of SCAD patients suggesting these findings are not a universal finding in SCAD and may not therefore be the primary cause of a coronary arterial weakness predisposing to SCAD in most patients.

Outside-in or Inside-out?

The study concludes that the immediate cause of SCAD is likely to be the development of a spontaneous intramural haematoma (the ‘outside in’ hypothesis) rather than an intimal disruption or ‘tear’ (the ‘inside out’ theory). This does not seem to be directly related to increased density of the small blood vessels that supply the walls of large blood vessels (vasa vasorum), coronary FMD or local inflammation (except as a response to injury).

SCAD in autopsy

The authors say that in cases of Sudden Coronary Death (SCD), it is important to assess coronary arteries during a post-mortem to exclude SCAD, especially where there is no evidence of myocardial necrosis (irreversible death of heart muscle following a lack of oxygen). And in cases where there is no sign of a heart attack, careful assessment should be made of the distal arteries for evidence of SCAD.

Low rates of atherosclerotic changes were seen in the autopsy cases. This may be because the SCAD patient population is mainly young/middle-aged females whose risk of atherosclerotic disease is low, but is also consistent with recent findings suggesting a common genetic variant (PHACTR1/EDN1) seen in SCAD patients reduces the risk of ischaemic heart disease. 

UK research

Thanks to everyone who contributed to this research, including those who have signed up for the UK research project, especially those who provided skin samples for analysis. Everyone who has allowed the researchers to access their medical records, study their scans and analysed their blood or skin samples is helping us get closer to answers, so please know that you are making a major contribution! If you haven’t yet signed up, please do.

The paper was a collaboration between researchers working on the UK SCAD project, including Dr David Adlam, plus Dr Mary Sheppard from St George’s Medical School in London, Jan Lukas Robertus from the Royal Brompton, Sarah Parsons from Monash University, Melbourne Victoria, and Jan von der Thüsen from Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.

Beat SCAD helped fund this research.

 

Physical activity and exercise in SCAD and FMD patients

A paper summarising the physical activity and exercise considerations for SCAD and FMD patients has been published in the European Heart Journal.

SCAD and Fibromuscular Dysplasia (FMD) are associated conditions. Many patients with SCAD have FMD but there are also many patients who have either one condition or the other. The precise links between these conditions are being studied but are not fully understood.

Following a SCAD, one of the questions many patients ask is what kind of exercise they can do? Some find cardiac rehab doesn’t challenge them enough, especially if they did a lot of exercise pre-SCAD. They also want to understand whether they can return to some of the exercise they previously did, such as running marathons, weight training and more.

It’s not only the patients who want guidance. Healthcare professionals, including cardiac rehab teams, are often unable to advise patients about what is ‘safe’ and what they should avoid.

Exercise has been associated with some SCADs, but it is not yet known if exercise actually causes SCAD. However, this association has led to caution in terms of advising what kind of exercise can be done.

The benefits of exercise, both in terms of physical and mental wellbeing, are well-known and the paper highlights that patients need to balance the theoretical risks of exercise after SCAD or FMD against the disadvantages of not exercising (both physical and mental) with all the known benefits that exercise brings.

The authors say there is a lack of data to help identify specific exercise programmes, however in their experience looking after SCAD and FMD patients, they recommend SCAD patients follow most of the usual advice given to the general public. However, they should avoid extreme exercise, favouring regular repeated activities over exercising to exhaustion and should rest if they become uncomfortable.

Exercise that is recommended for SCAD patients includes:

  • Cardiac rehab
  • Moderate aerobic exercise – 30-40 minutes a day/150 minutes a week
  • Interval training
  • Resistance training using lower resistance and higher repetitions

Patients are advised to be cautious when doing high endurance aerobic training, muscle-building exercises or Yoga poses that involve extreme head and neck positions.

They should avoid abrupt high-intensity exercise, contact sports and extreme head positions. Muscle toning type weights work is reasonable and the authors don’t recommend specific weight limits as some patients may find this too restrictive. Any weight lifting should be completed within a normal regular breathing pattern avoiding the Valsalva manoeuvre (holding your breath and straining during lifting of heavy weights).

The advice, based on expert opinion rather than data or controlled trials, for FMD patients is the same as for SCAD patients, but those with carotid or vertebral dissections should avoid resistance training during the first three months. Anyone with aneurysms should avoid anything that requires straining or Valsalva (eg sit-ups, planks) or anything that quickly increases blood pressure.

Dr David Adlam, who leads the UK SCAD research and is one of the paper’s authors, said: “We are excited to share a first set of published suggestions on how to exercise safely after SCAD and FMD. The main message is that exercise is good for the heart and good for the head and most activities with a few common-sense limitations can be continued safely.”

The paper is a collaboration between SCAD researchers Dr David Adlam, who is leading the UK research in Leicester, Dr Marysia Tweet, Dr Sharonne Hayes and Dr Amanda Bonikowske at the Mayo Clinic, and Dr Jeffrey Olin at the Icahn School of Medicine in New York. Beat SCAD funding has supported this research.

SCAD chapter added to textbook for interventional cardiologists

A textbook for interventional cardiologists now includes a chapter on SCAD. This is great news for the SCAD community as it provides up-to-date information about SCAD, its diagnosis, management and aftercare to interventional cardiologists.

The new chapter in the PCR-EAPCI Textbook Percutaneous Interventional Cardiovascular Medicine, has been written by cardiologists and SCAD experts Dr David Adlam, who is leading the SCAD research in Leicester, Fernando Alfonso from Spain, Angela Maas from The Netherlands, Alexandre Persu and Christiaan Vrints from Belgium.

“It’s the first chapter dedicated to SCAD of any textbook of this sort,” said Dr Adlam, who added that the textbook will be continually updated with new information as it emerges.

The chapter defines SCAD and discusses two theories for how SCAD occurs, the ‘inside out’ and ‘outside in’ hypotheses. ‘Inside out’ suggests there is a ‘tear’ in the artery wall that allows blood to enter a false lumen that develops between the artery walls, disrupting blood flow. ‘Outside in’ suggests that the initial event is a bleed within the artery wall, where an intramural haematoma (bruise) builds up and slows or stops blood flow through the artery.

SCAD bruise

Progress in the genetics area is discussed, including common and rare genetic variants that are associated with SCAD. Click here and here for more on recent research.

Incidence of SCAD is, the authors say, hard to estimate due to under- and mis-diagnosis, but estimates range from 0.8-4%.

Around 90% of cases are in women and SCAD accounts for 23-36% of Acute Coronary Syndrome (ACS) in women under 50-60 years of age, with the average age being 50. Only around 5-10% of SCADs happen during or after pregnancy (P-SCAD).

Issues with diagnosis are covered, including the increased risk of further dissections being caused by angiography. The authors also list some conditions that can mimic SCAD on invasive angiography so, for accurate diagnosis in these cases, the authors suggest other options including intracoronary (OCT) imaging and CT coronary angiography.

Other areas covered in the chapter include conservative management and healing, risks and outcomes of stenting (which is also discussed in a recently published paper) and bypass surgery.

Contraception, HRT and ongoing chest pain

In a section about contraception and HRT, the authors say if unplanned pregnancy and menopause symptoms can be managed without hormone therapy, this is the easiest option, but if not, they suggest preferred contraception and HRT methods. They also offer various management approaches for SCAD patients who suffer from migraine, which they say happens with increased frequency in SCAD patients.

Many SCAD patients have ongoing chest pain and the authors suggest this happens more frequently in women, those who have migraine and those who experienced previous psychological or chronic pain issues. In most patients this improves over time, but this can take up to two years.

Recurrent SCAD

Around 10% of patients have a recurrence within five years of the first event. Recurrences usually happen in a different location to the first SCAD and, in observational studies, the authors say increased coronary tortuosity, FMD (Fibromuscular Dysplasia), migraine, uncontrolled hypertension and non-use of beta blockers have been associated with increased risk of recurrence.

The authors also say current data suggest there is a risk of recurrent SCAD with unplanned pregnancy following an initial SCAD.

However, there is no evidence that exercise after SCAD increases the risk of recurrence and cardiac rehab is safe and beneficial, both physically and mentally, but isometric and extreme exercises are not recommended.

Mental health

Due to the younger patient population, SCAD patients are at high risk of post-traumatic and other mental health problems and the authors advise early referral to counselling or other therapies.

Dr Adlam says in the chapter: “Once considered ‘rare’ and largely a disease of pregnancy, the advent of high-sensitivity cardiac biomarkers, early angiography and intracoronary imaging has demonstrated SCAD is a very important cause of ACS in woman and although most patients are not pregnant or post-partum, SCAD remains a key cause of ACS in this context.”

Click here to see Dr Adlam discuss the chapter with Trustee Rebecca Breslin (at 13 mins). 

And he talks with Rodney De Palma, one of the editors of the textbook in this video.

The chapter is here (behind a paywall).

The PCR-EAPCI Textbook Percutaneous Interventional Cardiovascular Medicine is the main European textbook for cardiologists and trainees across Europe and the world who work in the cath lab. It is published by the section of the European Society of Cardiologists that deals with intervention.

Risks and benefits of PCI intervention in SCAD

A new study investigating the practice and complications of PCI (invasive angiography and placing of stents) in SCAD patients has been published.

Using data from SCAD patient registries in the UK, Netherlands and Spain, this study, co-written by Dr David Adlam and colleagues on the UK research project, is the largest international observational study of PCI in SCAD. It looked at 215 SCAD patients who had undergone PCI and 221 who had been managed conservatively.

Although conservative management is preferred where possible, some patients may need intervention to reduce the risk of greater heart injury. However, there is a higher risk of complications when PCI is used in SCAD and patients sometimes need longer stents than might be used for atherosclerotic heart disease.

“While a conservative approach to revascularisation is favoured, SCAD cases with higher risk presentations may require PCI. SCAD-PCI is associated with longer stent lengths and a higher risk of complications but leads to overall improvements in coronary flow and good medium-term outcomes in patients,” said the study.

Dr Adlam, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventional Cardiologist at University Hospitals Leicester and lead SCAD researcher, added: “There are definitely situations were stenting is the right thing to do. We don’t want the pendulum to swing too far in favour of conservative treatment when you have a more serious scenario, greater risk in terms of the heart muscle, and maybe in those cases you should, accepting those extra risks, still intervene in a careful and appropriate fashion.”

Beat SCAD asked Dr Adlam about the significance of this paper and the new chapter on SCAD in the PCI textbook. He said it’s important that clinicians who are reading the guidelines for healthcare professionals (eg NICE guidelines) are aware that SCAD is different in terms of PCI, so it’s important that this information keeps being shared and is available to clinicians dealing with SCAD.

Thanks to everyone who has signed up for and taken part in the research. Dr Adlam said: “A huge thanks to all volunteers – SCAD patients, families and healthy volunteers – because without you we wouldn’t have any of these data to analyse so we couldn’t publish these papers that take us forward with SCAD.”

Beat SCAD would also like to thank all the researchers across the world who continue to search for answers and establish best practice for managing SCAD patients.

Click here to watch Dr Adlam discuss the paper with Trustee Rebecca Breslin. 

 

SCAD patients benefit from creative workshops

When SCAD patient Giedre Calverley decided to run some creative workshops for other SCAD patients, she had a great response.

She told SCAD patients: “The purpose is to have a peer group where we could ‘make sense’ of changes in our lives caused by SCAD in a safe, facilitated creative space. Similar to peer groups in caring professions where people deal with difficult or even traumatic events by mutual reflection and support, this could be a confidential survivors’ group that helps in the same way.”

The idea to run the workshops came to Giedre because “Several months after my first SCAD in November 2018, I took a break from being a consultant psychiatrist in the NHS and started as a fine art student at my local college. Making art has become my main avenue for problem-solving, expression and maintenance of my health and wellbeing,” says Giedre.

“I explore ideas, think and make sense, develop meanings, tell and re-tell stories whilst drawing. I used to play music and sing as an amateur musician but in visual art I get to be a creator myself. It is as invigorating and mind-clearing as going for long walks in nature but with the added benefit of getting things off my chest. Making art takes me to a space where my mind wanders freely and I feel present and alive.”

Having benefited from making art herself, Giedre decided to share her experience with other SCAD patients. The weekly online workshops started in early March and ran for eight weeks. Five SCAD patients joined Giedre for the sessions.

Giedre explains, “Each week we had a different theme and activities to start us off: a warm-up activity and the main activity loosely based on a theme. We looked at making time to care for ourselves, being present and journalling. We explored our connections with others, looked at our strengths, explored our senses with a particular focus on touch (this session was beaming with laughter) and made drawings in response to our favourite text. We shared illustrated recipes of meals that are good for our hearts and took time to dream about our future.”

No previous experience in creating art was needed and during the workshops the group members made collages, painted with watercolour, did charcoal and pencil drawings and played some games with words and associations.

Giedre says, “An open mindset and willingness to learn, try something new and connect with others are much more important than any experience in art.”

Some of the participants said doing these sessions via Zoom meant that they could create in the privacy of their own home, and not feel they had to compare themselves and their art to others. “At the end of each session we discuss our experience in the session but image sharing is entirely optional and some people do not show what they make,” says Giedre.

Having a SCAD can shake your confidence and lead to anxiety and depression, but having a creative outlet can help recovery. One participant, Kay Deadman, said: “Giedre makes you feel so welcome and kept checking that you understood what you were doing but without any pressure to do it any particular way but to do it how you want to. This really challenged me as I had felt I had lost confidence of who I was and what I wanted when I had the SCAD and, at first, thought I wouldn’t be able to think of anything [to draw], but with Giedre’s gentle nature and guidance I was amazed with what I had done. I really enjoyed engaging with the others while doing art and we chatted and talked about our experiences and worries of SCAD, which helped me immensely.”

Giedre asked whether the workshops had improved participants’ confidence and everyone who responded to her feedback survey said their confidence had improved and they felt inspired to carry on creating, which is a great endorsement for the workshops.

Kay said the benefits of the sessions included: “Engaging with others who have experienced SCAD and starting to form friendships through art. There was something special about engaging in the same activity but each creating something totally different.”

Another participant said, “The SCAD stories and others’ advice and experience has been great in helping me deal with my own. The laughing is an additional medicine!”

Improving wellbeing was one of the aims of the workshops and, when asked if participants had seen any change and whether their feelings about SCAD had changed, the answers were extremely positive. “I have more confidence that I will be OK having met some lovely people who are further down the line than I am and are doing great,” said one.

Kay added, “Talking to other people who have experienced SCAD really helped me see that we can get our life back and to not be so scared of the future.”

The group members enjoyed the workshops so much they agreed to continue for another eight weeks and would thoroughly recommend other SCAD patients to take part in future workshops. Lucie Haddon, whose artwork is pictured here, said: “These wonderful sessions have been really beneficial for me. I have loved meeting the other SCAD ladies, including Giedre, and I have rediscovered the creative side of me. We have lots of laughs as well as the more serious conversations about our shared experiences.”

Giedre says she learnt a lot during these sessions. “The biggest and most gratifying experience for me was one of a human spirit – the depth and wisdom, the ability to create, transform, problem solve, draw and evolve meaning, see and create beauty, endure uncertainty, tolerate ambiguity, move forward despite discomfort, reflect and learn, share generously, care about others and laugh together! Each woman in the group brings her unique viewpoint, style, a collection of strengths and experiences yet underneath all the superficial differences beats a warm, brave and vast human heart.”

To see some of Giedre’s art, have a look on Instagram @giedr_art and see @Healing_scad_h_art for some of the art created by the SCAD patient group.

If you’re interested in finding out more, please click here to complete Giedre’s form. If there is enough interest Giedre plans to hold more workshops.