Study reveals majority of SCAD patients have little lasting damage to their heart

An important study to investigate the extent of heart attack (myocardial infarction) and its impact on left ventricular systolic function in SCAD patients was published on 3 January by the European Society of Cardiology European Heart Journal, the highest ranked cardiology journal globally.

Authors of the study include Dr David Adlam, who is leading the UK SCAD research, Dr Alice Wood, Research Fellow on the SCAD research project in Leicester, and Dr Abtehale Al-Hussaini, cardiology consultant who also worked on the SCAD research project.

158 SCAD patients from the UK SCAD Registry, and 59 healthy controls underwent CMR (cardiac magnetic resonance imaging) to look at their hearts and heart function.

  • The patients were 98% female with an average age at the time of SCAD of 45.8 years
  • 15 patients had a SCAD during or after pregnancy (P-SCAD)
  • A third of SCAD patients had STEMI (ST-Elevation Myocardial Infarction), which are more serious than NSTEMI (Non- ST-Elevation Myocardial Infarction)
  • 9% had had a cardiac arrest.

The study found that:

  • The left anterior descending (LAD) artery was the most commonly affected (68.6%).
  • Type 2 SCAD (a long diffuse and smooth narrowing mainly in the mid-to-distal) was the most common (72.9%).
  • 56 patients were managed with PCI (percutaneous coronary intervention – ‘stenting’), of whom 25 had complications following the procedure.
    • The most common complication was due to the haematoma (bruise) extending, and the rest were due to distal coronary or branch blockages resulting from stenting
  • 8% of patients had emergency coronary artery bypass grafting, half after an initial attempt at PCI.
  • SCAD patients in general had a very small reduction in ejection fraction (a measure of left ventricular systolic function), preserving cardiac function well in most cases.
  • A large proportion of patients (39%) do not have a detectable heart attack and a minority (6.4%) had a very large one.
  • P-SCAD was associated with larger heart attacks.

Key messages in this study include:

While a small number of SCAD survivors will be left with a larger heart scar, in most cases the lasting damage to the heart is small and in almost 40% of cases there is no detectable scar on MRI scanning after the heart has been allowed time to recover.

The paper also identifies the things associated with larger heart injuries which are:

  • ST-elevation (a feature on the ECG) at any point after presentation
  • Poor blood flow in the affected coronary artery
  • Muti-vessel SCAD
  • Hypermobility
  • There is also a signal for P-SCAD with this likely due to P-SCAD causing more extensive dissections

Dr Adlam said the paper has important implications. Firstly, the fact that 40% of cases have no detectable scar suggests that for a significant number of SCAD survivors the requirement for medications usually given after heart attacks leading to heart damage (particularly the ACE-inhibitor (-pril) and ARB (-sartan) group may be less strong (unless these medications are needed for other reasons such as high blood pressure).

Secondly, while this study confirms previous findings of high complication rates with coronary intervention (including stenting), it also identifies the key features which determine heart injury after SCAD. Knowing these features is helpful as it may be that these are features that cardiologists can use to identify SCAD patients at higher risk and in whom coronary intervention is still the best strategy despite the inherent risks.

It needs to be noted that this is observational data not a clinical trial, but it is an important step forward in our understanding of the impact of SCAD on the heart and what factors cause larger heart injuries in SCAD.

Dr Adlam said: “We are hugely grateful to the SCAD survivors, healthy volunteers and heart attack survivors who gave their time to allow this research to be carried out. We are also grateful to our funders and particularly Beat SCAD for their support, without which we would not have been able to continue our research.”

Chair of Beat SCAD, Rebecca Breslin said: “This study is an important step forward in our understanding of SCAD. The fact that the majority of SCAD patients have no or small heart attacks and preserved ejection fractions is very positive. This, and the identification of factors that are more likely to lead to larger heart attacks, including multivessel SCAD hypermobility features, will help health professionals in their treatment and management of SCAD patients.”

Click here to read the complete study.

 

 

 

SCAD survivor completes 12th 10K to raise money for Beat SCAD

SCAD survivor completes 12th 10K to raise money for Beat SCAD

Diana Walker was 49 in November 2016 when she had a heart attack caused by SCAD. She had none of the usual cardiac risk factors – no furred arteries, high blood pressure or cholesterol.

At the beginning of the year, Diana pledged to run a 10K every month in 2019 to raise money for Beat SCAD and the BHF. She wasn’t a runner before her SCAD but in April 2017 she did a zero to 5K nine-week challenge run by the Acre Street runners – and nine weeks later ran her very first 5K.

This year she did the Heaton Park 10K in January, Valentine’s Day 10K in Sheffield, Bradford 10K in March, the Sheffield neon night run and Kirklees 10K. Her challenge was not without its hiccups. At the Lindley 10K she got a groin strain half way through but still managed to hobble to the finish line. This put her out of action for a few weeks but she returned to run her seventh 10K of the year in Tinsley.

Her eleventh 10K was Rother Valley in November. Diana said: “I’m sure it’s nice in Summer but today was very very muddy and pouring. Drenched and cold but we made it round. Nice medal though!”

She added: “That’s the eleventh 10K in the bag. Due to injury earlier in the year I have had to catch up and that was the third 10K in four weeks, which is too much for someone who doesn’t find running easy at all. The clues in the name ‘Walker’!”

Last Sunday she ran her final 10K of the year at Elsecar in South Yorkshire.

Diana (pictured top left with her running buddies, sisters Tracey Cable and Julie Lockwood), has raised almost £1500 including Gift Aid, which will be split between Beat SCAD and the BHF. A massive thanks to her and all her supporters for this fantastic fundraising effort – not to mention the brilliant achievement by Diana!

 

Book now for our 2020 Conference!

Book now for our 2020 Conference!

Registration is now open for the Beat SCAD Conference on Saturday 6 June 2020 at the University of Birmingham.

Confirmed speakers include the UK’s SCAD experts Dr David Adlam, Dr Abi Al-Hussaini and Dr Alice Wood, who will all be updating us on SCAD and the research.

There will be lots of networking time during the day as well, so you’ll have lots of opportunities to meet other SCAD patients and their families.

We are hoping to beat our 2018 record of 120 delegates – of which 68 were SCAD patients, so do register now and join us on what promises to be an informative and enjoyable day.

Click here for details and go to the How to book tab for the link to our registration form. Once you’ve completed that, you will be directed to our online shop to pay the delegate fee(s).

This year we are offering sponsorship opportunities and exhibition space – click here to find out more.

We look forward to seeing you in June!

Supporters join Beat SCAD for annual walk

Supporters join Beat SCAD for annual walk

More than 70 people walked to Beat SCAD on Saturday 14th September. The weather was fantastic and the route in Coombe Country Park, Coventry, took us through some lovely parts of the park and provided a beautiful environment for the SCAD community to come together and support each other. Walkers included SCAD patients, families and friends. Click here to see some of the highlights.

After the walk, Rebecca Breslin, Chair of Beat SCAD, talked to the group about Beat SCAD, our mission, achievements and plans for the future, including our current fundraising campaign ‘The Alice Project’. This important campaign is raising £64,000 to pay for research fellow Dr Alice Wood to stay on at Leicester for another year of research into SCAD, focusing on subgroups including male SCAD patients, pregnancy/post-partum cases and those who have experienced a recurrence of SCAD.

Our fundraising target for the walk is £16,000 and our page total currently stands at 46% with a fantastic contribution of over £3,000 coming from the fabulous Scottish Patient Group who hosted their walk in Edinburgh on 31 August.

Funds raised from registration fees (over £750), online donations, plus on-the-day donations and merchandise sales (over £500), which included sales of our brand new ‘hot off the press’ lapel badge, all go into the fund for ‘The Alice Project’.

There is still time to donate to ‘The Alice Project’ if you are able. Huge thanks to all who have contributed already. The research is essential, and we must do everything we can to keep it and allow it to move forward to find the answers to our many questions.

Dr David Adlam, who leads the UK SCAD research, then updated us on progress and took questions from the audience.

He said some more papers about different aspects of the research are due to be published in the coming months, including an MRI scan study that will shed light on the heart damage caused by SCAD. So far it seems that the vast majority of SCAD patients have very little long-term damage to their hearts.

He added that the recurrence risk is approximately 10% over a 3-3.5-year follow-up and the outlook for those who have a recurrence is generally good.

Dr Adlam is working with French, US and Australian research teams on genetic aspects of SCAD and biomarker studies are being carried out in collaboration with a Spanish research team which (in the distant future) could pave the way for earlier diagnosis of those at risk of SCAD via a blood test.

Research is also being done on entire vascular systems to investigate links with FMD and other vascular conditions. Dr Adlam explained that for the vast majority of SCAD patients who also have FMD, this diagnosis is clinically unimportant and rarely requires a change to their medication or lifestyle. A tiny number will have worrying signs associated with FMD (eg aneurysms) that will need monitoring. It appears that FMD is less commonly found in male SCAD patients.

For those who have signed up to take part in the research, Dr Adlam told us the research team will be sending out follow-up questionnaires for patients to update them on their progress, so if you receive one, please do complete and send it back as soon as you can. Questionnaire responses are a key part of the research and contribute to the statistics patients are asking for, such as recurrence rate and how common post-SCAD chest pain is.

Many thanks to everyone who came to the walk, to David and Martina Fletcher for their help in organising the walk and venue, to Sally Bee for starting the walk off, Dr David Adlam for updating us on the research and Theo Leeds for filming the event.

Stay tuned for the video of Dr Adlam’s talk!

 

Scottish patient group raises £3,000

Scottish patient group raises £3,000

An essential part of the Beat SCAD mission is to provide support to everybody affected by SCAD, and time and time again the charity sees how beneficial ‘in-person’ support is, but delivering this is quite the challenge for our small team when the SCAD community are located throughout the length and breadth of the country, meaning attending the Beat SCAD walks and conferences is just not possible for some. Beat SCAD strongly encourages local groups to come together and bring the Beat SCAD mission to life in their region.

The Scottish Patient Group, established in May of this year, are a shining example of the strength, determination and power that a local group develops. Led by SCAD patient Margaret Davis, ‘Team Scotland’ are driving the Beat SCAD mission to raise awareness, provide support and fund research. They have already been making waves in the Scottish Parliament earlier this year, highlighting key issues and raising vital questions about the care options for SCAD patients in Scotland.

On 31 August, the Scottish SCAD patient group hosted a walk in Edinburgh for patients, families and friends to raise awareness and money for research into SCAD.

They set up a fundraising page for donations and have raised more than £3,000 for The Alice Project. Dr Alice Wood is currently researching SCAD and Beat SCAD has committed to raising £64,000 to fund a further year’s study.

Organised by Margaret Davis, Mary Galbraith, Colette Gillespie and Roisin Falconer, the walk was a great success, with 70 walkers taking part including 11 SCAD patients – the largest gathering of Scottish SCAD survivors to date (and setting a nice target to beat with their next walk!)

The group met at the Scottish Gallery of Modern Art, where Beat SCAD Scottish Patient Lead Margaret welcomed the group and updated them about the patient group activities. After a picnic in the grounds of the gallery, the group set off for their 5km walk heading towards Stockbridge, which took in some scenic parts of the city by the Water of Leith, passing through the beautiful Dean Village and taking in some magnificent Georgian architecture along the way.

Special T-shirts were printed and bought by walkers, helping to raise funds. The Scottish Patient Group even designed their own tartan, proudly displayed in a heart design on the back of the shirts with the Beat SCAD charity logo on the front. Great job Team Scotland – you all looked fabulous!

Margaret Davis said: “The main purpose is to be here for each other.”

Jennifer Heenan attended the walk and said: “A proud day for Beat SCAD and our Scottish Patient Group. Well done to everyone who took part and wished us well and was with us in spirit.”

Everybody at Beat SCAD would like to extend our gratitude to the Scottish Patient Group for everything you are doing. We look forward to hearing more about your ventures, and for other local groups to develop in a similar way. Together we will beat SCAD.

Walking to fund research… The Alice Project

Walking to fund research… The Alice Project

When you speak to any SCAD patient who has attended Glenfield Hospital in Leicester to participate in the only UK SCAD research programme, they describe what an incredible experience it is and express how valuable it feels to be a part of the journey to find answers to understand SCAD.

The research has already provided important findings, presented in the European Position Paper (published February 2018) as well as genetics findings and imaging findings.

But the research needs more funding and we can all do our bit to make this happen. Are you willing to help?

Beat SCAD are launching ‘The Alice Project

Dr Alice Wood joined the team in Leicester as a Clinical Research Fellow in 2017 to embark on a three-year PhD with a focus on studying important sub-groups including men with SCAD, those who have experienced more than one SCAD event, and pregnancy related (P-SCAD) cases. Beat SCAD have already donated £75,000 to help fund Dr Wood’s important work (as contributions to salary costs).

Beat SCAD are now working to raise £64,000 for ‘The Alice Project’ to fund an additional year of research by Dr Wood. Numerous events hosted by the charity plus challenges completed by our amazing supporters will make this goal possible.    

On Saturday 14th September, Beat SCAD are hosting a walk at Coombe Country Park, Coventry to bring together SCAD patients, their families and friends. Lead UK researcher, Dr David Adlam will give a talk to share latest updates about the research. The walk is a ticketed event and each adult pays £10 and under 16s are free. Funds will go towards ‘The Alice Project’.

Click here for full event details, including how to register and pay.

Beat SCAD are aiming to raise £16,000 from the walk, one-quarter of ‘The Alice Project’ total.

This may seem a daunting target but the UK SCAD patient group is approaching 600 members. If each group member could raise £30, we would exceed the £16K target! As a community, we can raise the funds that our research needs to keep progressing.

If you are unable to attend the Beat SCAD walk in September, why not host your own?

SCAD patients often arrange local meet-ups and a walk would be another great opportunity to come together in your region. If you use the Facebook patient or family and friends groups, why not create an event? If you don’t use the Facebook groups, feel free to reach out to the Beat SCAD team via contactus@beatscad.org.uk and we can check for any plans to meet in your region.

The Scottish patient group are hosting a walk in Edinburgh on Saturday 31st August and they have set up their own Just Giving fundraising page , which links to the Beat SCAD Alice Project page. This means they can track their own fundraising at the same time as contributing to the overall fundraising total.

How to link your fundraising to the Beat SCAD Alice Project page

If you would like to create your own fundraising page to raise money for ‘The Alice Project’ here’s how to do it:

1. Access the Beat SCAD Alice Project page

2. Click the orange ‘Start Fundraising’ button. You will need a Just Giving account to create your own page.

 

Alternatively, please consider donating via the existing fundraising page.

Tell us about your event!

If you choose to host your own walk, we would love to hear about your day and it would be amazing if you sent us some photos so we can write a story about your walk for our newsletter.

Why is the research so important?

One HUGE reason is the urgent need for SCAD to be included in National Institute for Health and Care Excellence (NICE) guidelines. NICE guidelines inform healthcare professionals nationally and are developed according to the best evidence available. NICE recommendations are created by compiling feedback from experts, people using services, carers and the public. We are on the right path to reach this goal – with more research!

All donations are greatly appreciated – thank you!

https://www.justgiving.com/campaign/beatscad-aliceproject