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.