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

Scottish SCAD patients call for action at BHF event

Scottish SCAD patients call for action at BHF event

Pictured above (l to r) Margaret Davis, Monica Lennon MSP, and Róisín Falconer

SCAD survivors Margaret Davis and Róisín Falconer attended a British Heart Foundation (BHF) conference in Edinburghon 29 May, where an expert panel aimed to address how heart disease affects women in Scotland, and the inequalities they can experience in diagnosis and care.

According to the BHF, heart attacks kill more Scottish women than breast cancer, but women with heart and circulatory diseases are often diagnosed later than men and have worse outcomes.

The first speaker was Professor Colin Berry, Professor of Cardiology and Imaging at the University of Glasgow, who outlined the key issues. When he asked for questions, Margaret and Róisín spoke about the issues SCAD patients in Scotland have, including difficulties getting referred to the two UK’s SCAD NHS Clinics in Leicester and London. Margaret shared her story and said that she felt that she had been lucky that her SCAD and MI had happened while on holiday in England, as this had led to immediate contact with and quick referral to the team at Leicester.

Professor Berry, who knows about SCAD and cares for some SCAD patients, responded, reinforcing the issues raised and the problems in getting care. The team from Chest Heart & Stroke Scotland (CHSS), who aware of the issues facing SCAD Survivors through discussions with Beat SCAD, supported Margaret’s comments and agreed that more needs to be done in terms of the supply of appropriate Cardiac Rehab.

Scottish patients would like a SCAD clinic established in Scotland to care for Scottish patients. As one has already been set up in Dublin, Margaret asked if, as a Scottish citizen, she would have to apply for an Irish passport to get treatment, as some patients are unable to get referrals to Leicester or London, due to cross-border funding issues.

Monica Lennon, Member of the Scottish Parliament for the Central Scotland, responding on behalf of the other MSPs, said all parties would take this issue forward. Margaret received an email from Monica two days after the Conference confirming the Parliamentary questions she has raised to progress the issues.

The next speaker, Anna Marie Choy from Ninewells Hospital in Dundee, focused on heart issues and pregnancy. Róisín’s SCAD happened after the birth of her third child in 2013. She was told by paramedics she was having a panic attack, then, when they finally did an ECG, they realised she was having a heart attack. She was a slim, healthy 38-year-old with none of the traditional risk factors for heart disease. The doctors who had initially treated her didn’t find the SCAD and told her she was just unlucky and it wouldn’t happen again… but it did. She finally got a SCAD diagnosis, but it was only when she was able to speak to a SCAD expert in Leicester that she started to understand what had happened to her and move on with her life.

“It was like a weight being lifted off my shoulders, to finally talk to an expert, and just the acknowledgement that my symptoms were real, I think was probably a turning point for me. I could get on with my life,” she said.

Margaret said: “You could have heard a pin drop when Róisín was speaking. She got through it fine – I was in tears.”

In the audience were cardiac nurses who work with gynaecology teams, and one of them has followed up with Róisín and is committed to taking this forward.

A massive thanks to Róisín and Margaret for raising awareness not just of SCAD but of the issues Scottish patients have in terms of being referred and getting appropriate treatment. We look forward to hearing about all the follow-up actions from the speakers and audience members.

OCT study reveals more clues about mechanism of SCAD

What causes SCAD? This is one of the key questions SCAD researchers around the world are working hard to answer. Understanding the mechanism of how a SCAD occurs is an important aspect to advance knowledge and guide further research.

The European Position Paper published in February 2018 describes two potential mechanisms:

1) ‘Inside-out’: the development of a ‘tear’, allowing blood to accumulate in the artery;

2) ‘Outside-in’: the development of a ‘bruise’ that haemorrhages (leaks) into the artery wall.

To investigate these theories further, the UK research team led by Dr David Adlam collaborated with colleagues throughout Europe and in South America to study intracoronary images of SCAD patients obtained via Optical Coherence Tomography (OCT).

OCT is a kind of intravascular ultrasound that utilises light to deliver high-resolution cross-sectional images of the inside of the blood vessels. These images are more detailed than the images obtained during a coronary angiography, which is the more routine imaging method used to investigate the heart. Interventional cardiologists may perform OCT in addition to aid decision making for the optimum treatment plan for a patient.

To date, SCAD has largely been thought of in the context of the first mechanism, that a tear develops which blocks normal blood flow and often leads to a heart attack. However, the study found that a proportion of SCAD patients had no visible tear at all. The study also provides insight into the effects of pressure due to compression of the blood vessel which could mean that the tear develops as a result of the pressure rather than the tear being the primary event.

In this video, Dr Adlam describes the study, summarises the findings and their importance, in addition to describing next steps for the research.

The paper, Spontaneous Coronary Artery Dissection: Pathaphysiologal Insights from Optical Coherence Tomography, was published by JACC: Cardiovascular Imaging in March 2019.

Schools raise money for Beat SCAD

Schools raise money for Beat SCAD

Three schools in Newbury, Berkshire, attended by children of a SCAD patient, have raised more than £500 for Beat SCAD!

School nurse Kim had a SCAD in September 2018 (read her story here) and was subsequently diagnosed with Fibromuscular Dysplasia (FMD) as well. Everyday life has changed for Kim, but she has found connecting with other SCAD patients a lifeline.

Her children’s schools held non-uniform days to raise money for Beat SCAD and did a fantastic job. In total the three schools raised £531.42 for Beat SCAD.

St John The Evangelist Nursery and Infant School, which Kim’s youngest son attended at the time she had her SCAD, raised £151.42 for Beat SCAD by selling the crafts the children had made.

At St Nicolas Church of England Junior School, all the children wore red or pink for a day to raise money for Beat SCAD. Kim’s son’s class (pictured below) raised £230.

 

Her eldest two children are in Davis House at St Bartholomew’s Secondary School, which raised £300 by wearing red and making love hearts with their hands. This was split between Children in Need and Beat SCAD. Pictured below is Kim’s daughter and friends with Head of Davis House Mrs McKeown.

Massive thanks to all the children, their parents, families, friends and the teachers who made this possible!

And thanks to Kim, who is pictured below with her husband and children.