Paramedics learn about SCAD

Paramedics learn about SCAD

Paramedics are often the first healthcare professionals to come to the aid of SCAD patients, so raising awareness in this area is important to ensure they ‘think SCAD’.

Trustee Karen Rockell takes every opportunity to educate people about SCAD, so when an ambulance was called to help her cousin after a bad fall in Oxford while Karen was visiting last September, she wasted no time discussing SCAD with the ambulance crew.

After paramedic Danny Warr and his trainee had treated her cousin, Karen asked if they knew about SCAD. Briefly explaining what it is, Karen gave Danny her contact details and pointed him to the Beat SCAD website for more information.

Fast forward to early 2019 and Emma Roberts from South Central Ambulance Service contacted Karen, having been told about SCAD by Danny. She invited Karen to give a talk about SCAD to 12 paramedics and trainees at the North Oxfordshire Station at Adderbury on 20 February.

Her talk included information about the mechanics and symptoms of SCAD, as well as treatment options. She also told some patient stories to highlight how SCAD affects young, fit people. This was followed by a very lively discussion covering many subjects including genetics, the SCAD research, recurrent SCADs and how paramedics can help SCAD patients by being aware of the symptoms in those who do not have the usual risk factors

Karen said: “Educating two paramedics in September was good, but I was so pleased Danny discussed SCAD with Emma, and that they were so proactive in wanting to learn about the condition.”

Danny told us: “The team really enjoyed it and learnt a lot. We will spread the word.”

 Pictured are the group of paramedics with Karen.


SCAD patient educates future doctors

Raising awareness among health professionals is a key mission for Beat SCAD and SCAD patient Louise Pearson has recently been educating medical students at the Royal Derby Hospital, Nottingham University School of Medicine.

Louise was one of four volunteers who took part in an education session for first-year students at the Medical School. The session gives students experience in taking medical histories, learning how to ask open and closed questions, showing empathy while retaining the information to feed back to the group for constructive criticism.

Louise talked about her ‘event’ to four groups of about 12 students and their tutors, without saying that it was SCAD. After her medical history had been taken, the students gave their diagnoses, which included Pulmonary Embolism, angina and an asthma-related attack. Louise then revealed to the group that she had actually had a SCAD.

She said: “There were some very shocked reactions and immediately all the pens were busy making notes!”

The group discussed the reasons Louise’s symptoms pointed to a heart attack and “on some occasions they picked up on how the medics ruled out a heart attack too early in my case”.

She added: “It’s one of the most thrilling experiences to tell the tutors too, because they are usually unaware of SCAD. I did this process four times, so informed around 45 students, half the yearly intake.”

Louise also handed out our SCAD for health professionals leaflet, so the students had a reminder of the unusual case they had tried to diagnose.

Well done and a big thanks to Louise for informing the doctors of the future!

Beat SCAD Trustees attend first UK FMD Information Day

Beat SCAD Trustees attend first UK FMD Information Day

The first UK Fibromuscular Dysplasia (FMD) Information Day was held in Salford on 19 January, hosted by the Fibromuscular Dysplasia Society UK & Ireland.

Many SCAD patients are also diagnosed with FMD so this was an excellent opportunity for the Beat SCAD Trustees to find out more about the condition.

The day was a great example of how patients and SCAD and FMD experts in the medical profession are collaborating in the search for answers.

Melton & District Model Show volunteers

Pictured above (l to r): Dr Martin Punter (Consultant Neurologist), Dr Rekha Siripurapu (Neuroradiologist), Tina Chrysochou (Consultant Nephrologist) and Dr Amit Herwadkar (Consultant Neuroradiologist), all from the Salford Royals Hospitals NHS Foundation Trust, with Karen Rockell (Co-Founder of the FMD Society of UK & Ireland) and Professor Alexandre Persu (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels and Lead for the European FMD Registry)

The day kicked off with Dr Tina Chrysochou, Consultant Nephrologist, Salford Royal Hospitals NHS Foundation Trust and Lead RADAR FMD Special Interest Group, explaining what FMD is. She explained that FMD causes narrowing and/or enlargement of one or more medium-sized arteries. This can reduce blood flow and affect the function of organs.

FMD is more common in women (approx 80-90%) but does occur in men too. Current figures indicate that it mainly affects arteries leading to the kidneys, but is also found in arteries leading to the neck and brain, heart, abdomen, arms and legs.

The cause is unknown, but it is not an inflammatory condition, nor is it caused by atherosclerosis (furring of the blood vessels). It is not known whether there is a hormonal factor. Some people who have FMD are asymptomatic but others may have complications such as high blood pressure or artery dissections.

Dr Chrysochou discussed the association of FMD with SCAD, saying some figures show 50-75% of SCAD patients also have FMD, but the converse is rare, ie fewer FMD patients have SCAD. Figures from the European FMD Registry show that out of 687 patients, just 78 had SCAD. FMD was familial in just 2% of cases and two-thirds of patients have FMD in more than one vascular bed.

As with SCAD, research is ongoing, and the first Consensus Statement, published recently, was a collaborative project that included FMD and SCAD experts.


Following Dr Chrysochou’s very informative presentation, Dr Neeraj Dhaun, BHF Intermediate Clinical Research Fellow & Honorary Consultant Nephrologist, Queen’s Medical Research Institute, Edinburgh, described an unusual presentation of FMD involving a 35-year-old man who was found collapsed in his hotel bedroom. He’d had seven weeks of daily frontal headaches and three weeks of blurred vision. He had very high blood pressure but was a non-smoker and was on no regular medication. He had recurrent seizures, had gone blind and had amnesia. Although a challenging case, the patient was diagnosed with FMD and, once treated, his blood pressure returned to normal and his sight returned.


FMD in the neck and head

Dr Amit Herwadkar, Consultant Neuroradiologist, and Dr Martin Punter, Consultant Neurologist, Salford Royals Hospitals NHS Foundation Trust, explained cervico-cephalic (neck and head) FMD. Symptoms of cervico-cephalic FMD are headaches, pulsatile tinnitus and neck pain. Dr Punter said up to 65% of FMD patients may have extracranial cerebrovascular disease (ie carotid or vertebral narrowing outside the skull), often affecting the bilateral internal carotid artery.

Dr Herwadkar explained how imaging (CTA, MRA and Duplex ultrasound) is used to diagnose FMD and ascertain the extent of the disease in the head and neck. He explained that CTA is the first choice imaging or contrast-enhanced MRA is an alternative. Ultrasound would rarely be used as a first diagnostic tool.



Dr David Adlam, Chair ESC-ACCA SCAD Study Group, Associate Professor of Acute and Interventional Cardiology, University of Leicester, who is leading the SCAD research project in the UK, presented on the link between FMD and SCAD.

FMD is one of the conditions found in some SCAD patients, along with cervico-cerebral artery dissection (CCeAD), aortic dissection, intracranial aneurysms and connective tissue diseases. The recent finding that a common genetic variant on the PHACTR1 gene is associated with increased risk of FMD, CCeAD, SCAD and migraine is a big step forward in the quest to understand these conditions.


Patient perspective

Sally Bee, celebrity chef and wellness coach and FMD and SCAD survivor, gave an uplifting talk to patients, saying it is up to individuals how they react to their diagnosis and that a positive attitude goes a long way. She described how her SCAD in 2004 was a devastating blow to her and her family, including three children under five, but despite the odds she recovered. She was also diagnosed with FMD and had a second SCAD in 2016. A positive attitude and healthy eating has been a cornerstone of her recovery and her daily life.



FMD Society of the UK & Ireland

Karen Rockell, Founder of the FMD Society of UK & Ireland and Beat SCAD Trustee, told delegates that the society aims to support FMD patients and families and encouraged people to get involved and offer their help.

The delegates finished the day with a workshop to identify what they would like from an FMD clinic and research.

Feedback from the day was very positive and the Beat SCAD Trustees certainly learnt more about FMD and its potential links with SCAD. The presentations have all been filmed, so keep an eye on our Facebook page and that of the FMD Society of UK & Ireland for further information.

The Information Day is a great example of collaboration between SCAD and FMD experts. Pictured below (l to r): Dr David Adlam (Chair ESC-ACCA SCAD Study Group, Associate Professor of Acute and Interventional Cardiology, University of Leicester, who is leading the SCAD research project in the UK), Dr Caitriona Canning, Consultant Vascular Medicine, St. James’s Hospital, Dublin, who has established an FMD and SCAD Clinic, Dr Tina Chrysochou (Consultant Nephrologist) and Professor Alexandre Persu (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels and Lead for the European FMD Registry)

Melton & District Model Show volunteers
Beat SCAD Charity Golf Tournament raises over £1200

Beat SCAD Charity Golf Tournament raises over £1200

On Sunday 16 September 22 golfers tackled the Collingtree Park Golf Club course in Northampton in the first Beat SCAD Charity Golf Tournament. Paul Bone, husband of SCAD survivor Robyn, organised the event to raise money for research into Spontaneous Coronary Artery Dissection after Robyn’s dramatic SCAD event.

Paul and Robyn Bone

Paul and Robyn Bone

Earlier in the year Paul and his sister Loren had run the Milton Keynes marathon and raised a brilliant £1,900 for Beat SCAD. Having recovered from that, Paul decided on a golf tournament for his next fundraising effort. He began planning the competition, and obtaining prizes for an auction to be held at the post tournament dinner.

Collingtree Park has been a PGA EuroPro Tour venue, so the course was challenging for some. Luckily, on the day the sun shone and although a little bit windy, the weather was kind enough to the golfers as they played in teams of four around the Collingtree Park course. With a variety of abilities among the players the tournament was played under Stableford rules.

At the end of the day, several supporters joined the golfers for a delicious dinner. This was followed by a brief speech by Beat SCAD Trustee Karen Rockell. The winner’s trophy was awarded to Lee McAlister (pictured above with Paul), who also won the Longest Drive competition. The Nearest the Pin trophy went to Brian Juffkins and the final prize went to Lee Ives coming in with the lowest Stableford score of the day.

Finally the evening ended with a Charity Auction. Amongst the prizes Paul obtained was a signed football shirt from Gazza, and various other prizes including several vouchers to play at a variety of golf courses in and around Northamptonshire.

It was a great day, enjoyed by all and a brilliant £1220 was raised for Beat SCAD.

The second Beat SCAD Golf Tournament will be held in May 2019. Keep an eye on the Beat SCAD website, Twitter or Facebook page for more information. Individuals, teams of two or four are invited to enter. For more information please email

Beat SCAD donation leads to genetic breakthrough by UK researchers

Beat SCAD donation leads to genetic breakthrough by UK researchers

In January 2018, a donation of £3,000 was awarded following the Beat SCAD Prize Draw that ran between September and November 2017. These funds were used to purchase and distribute blood sample tubes to SCAD patients who were registered for the research but had not participated in any research assessments.

SCAD patients took the blood tubes to their GP or local hospital for samples to be taken and shipped to Leicester. Almost 400 patient samples plus a further 50 samples from relatives were returned, which was a fantastic return rate and was hugely appreciated by the research team.

Dr Adlam said: “The blood samples have led directly to the identification of the first genetic risk locus associated with SCAD. This should not be considered as an indication that SCAD is strongly inherited as the evidence suggests SCAD does not usually run in families, but it provides international research groups with the first opening into understanding how our genes affect the risk of SCAD.”

The publication of the first SCAD genetics paper in the prestigious Journal of the American College of Cardiology (JACC) is imminent and the funding support of Beat SCAD is acknowledged in the manuscript.

The blood samples are now undergoing gene sequencing and will soon provide a valuable dataset for the research team to investigate, including looking for known genes for connective tissue disorders.

The blood samples are also enabling important laboratory work to be conducted which aims to investigate some of the underlying ‘why’ questions about SCAD.

Samples from SCAD patients and healthy volunteers are being used for a proteomics study in which the structure and function of proteins are being analysed. The expression of proteins by cells and tissues can change in relation to disease so this study is looking for any patterns that may be linked to SCAD.

Beat SCAD attend Genetic Alliance Rare Disease Patients’ Network in Cardiff

Beat SCAD attend Genetic Alliance Rare Disease Patients’ Network in Cardiff

On Thursday 18 October, Beat SCAD Trustees Sarah Coombes and Harriet Mulvaney attended the Rare Disease Patients’ Network in Wales event in sunny Cardiff. This was the fourth such annual event and the first one Beat SCAD had attended.

The day was organised and hosted by Genetic Alliance UK (the national charity of 200 patient organisations supporting those affected by genetic conditions and the umbrella body for Rare Disease UK, the national campaign for people with rare diseases and all those who support them) and Wales Gene Park. It brought together many patients, all of whom had a rare disease, their carers and families, healthcare practitioners and other interested parties, to enable networking, sharing of stories, listening to updates on research projects and progress on the Welsh Implementation Plan for Rare Diseases.

The aims for Beat SCAD were to:

  • Raise awareness of SCAD
  • Secure interest in the work Beat SCAD are doing by asking people to sign up for our newsletters
  • Make useful contacts that can support us in our mission in Wales
  • Network with other patients and researchers, hear their stories and listen to updates on work

There was a steady of flow of visitors – patients and their families, healthcare practitioners, researchers, representatives from other charities and organisations. It was a fantastic feeling to be sharing our stories, the power of patient-led/inspired research and the amazing work that is going on in research programmes. We sensed a genuine interest in our condition.

There was also the opportunity to attend some of the organised speaking slots throughout the day. Hearing stories from those affected by a rare disease was very moving, and it was a real honour to talk to them when opportunities arose.

Whilst all our experiences were different, there were lots of issues and challenges that were shared: including: difficulty and/or delay in getting a diagnosis, limited information about the condition finding the right person to treat your condition, constantly self-advocating and retelling your story in order to get access to the right treatment, plus dealing with the challenges a rare disease throws at you in addition to ‘just life’.

Sarah was able to attend a session giving an update on the SIGNAL Project (Studying the Implementation of GeNomics in wALes) – click here to read her report.

Harriet heard an update from the Senior Policy Manager at the Welsh Government, responsible for progressing the Welsh Implementation Plan for Rare Diseases, Caroline Lewis. This is a five-year plan, first published in February 2015.

Of the 3.1 million people in Wales, they estimate 150,000 are living with a rare disease.  Reference was made to the large number of referrals and treatment outside of Wales but they were not able to provide detail at this event. By Caroline’s own admission, progress against this plan has been slow and the first year was spent identifying leads within each of the Welsh Health Boards, securing engagement with the plan being their first major hurdle. They then identified the plan ‘as was’ wasn’t deliverable so it was re-published in July 2017.  Their immediate priorities now are to:

  • identify the approach to treatment for patients with unknown diagnosis
  • promote these treatment ‘pathways’ throughout primary and secondary care
  • analyse in detail the events following all diagnosis of a rare disease and make this available widely
  • set out how feedback from patients contributes to rare disease treatment and work.

In summary, some progress has been made in improving the care of people with rare diseases in Wales, but more still needs to be done. Continued exposure and the raising awareness of the Rare Disease Implementation Plan and the Implementation Group with senior management within health boards continues to bring positive returns, however there is ample room to build on this.

Click here to read more about the progress being made in Wales in the latest Annual Report (2017).

Yet again, the day provided numerous opportunities to reflect on the collective power of our individual stories.