Beat SCAD exhibits at the London Maternity and Midwifery Festival

On Tuesday 1 March Beat SCAD exhibited live for the first time in over two years. And it wasn’t just Covid that we had to negotiate but a tube strike as well!

Trustee Sarah Coombes (pictured right) and volunteer Charlotte Pearl (pictured above) staffed the Beat SCAD stand at the London Maternity and Midwifery Festival at the Royal National Hotel in London.

Although the tube strike meant a smaller than expected audience on the day, Charlotte and Sarah spoke to about 40 delegates in depth. Some had heard of SCAD but others had not.  Our leaflets and pregnancy-related SCAD (P-SCAD) case studies were snapped up. Many attendees stood talking with us for a long time asking many questions and saying they would share the information they had learned with their colleagues.

Beat SCAD also spoke with the editor of The Student Midwife Journal and we are working on a ‘special report’ about SCAD for student midwives, which we expect will be included in the edition published in the first quarter of 2023. Work like this complements the inclusion of SCAD in the Myles Midwifery Textbook   and the NHS Mum and Baby App.

Dr Al-Hussaini, consultant cardiologist who specialises in SCAD, pre-recorded a ‘meet the expert’ session and this was viewed by delegates during their lunch break. She provided an outline of what SCAD is and how we believe it is under-diagnosed in pregnant and recently pregnant women. She discussed warning signs for SCAD in pregnancy and the post-partum period – in particular what symptoms should raise the alarm and what midwives should do if they suspect SCAD.

All presentations have been made available to both live and virtual attendees in a ‘box set’ for future review, so Beat SCAD’s information will reach an even wider audience in the months ahead.

Beat SCAD would like to thank Dr Al-Hussaini for her contribution to the event and Charlotte for spending the day with Sarah and raising awareness of SCAD with great enthusiasm and expert knowledge.

We were pleased to hear that in the delegate evaluations completed by those attending the event in person, there were 39 mentions of Beat SCAD with positive comments about the work we do.

We look forward to more opportunities to raise awareness of P-SCAD in the maternity sector. Click on the links below to read more.

P-SCAD

P-SCAD case studies

Dr Al-Hussaini’s SCAD clinic 

Beat SCAD awards £106,000 to UK research

We are very excited to announce that Beat SCAD has awarded £106,000 to help fund a new Clinical Research Fellow for the SCAD research project in Leicester.

Dr David Adlam, lead researcher, is currently recruiting the Research Fellow, who will be appointed for two years, starting August 2022. They will contribute to and expand the research already done by the team, as well as help Dr Adlam with clinic appointments.

Research done by previous Clinical Research Fellows, Dr Abtehale Al-Hussaini and Dr Alice Wood, as well as other members of the team, has contributed to important discoveries about SCAD, so we are committed to helping this important work continue.

Thanks to the incredible efforts and admirable determination of Beat SCAD supporters since the charity launched in November 2015, we have awarded more than £297,000 to support Dr David Adlam’s research in Leicester:

  • 2017: £25K for Dr Alice Wood’s PhD research
  • 2018: £3K for blood tubes for a genetics study (which led to the identification of a genetic risk locus, PHACTR1/EDN1)
  • 2018: £50K for Dr Alice Wood’s PhD research
  • 2020: £64K for Dr Alice Wood’s PhD research
  • 2020: £23K for Dr Alice Wood’s PhD research
  • 2020: £15.6K for genetics work
  • 2020: £7.6K for proteomics work
  • 2020: £3K for laboratory consumables

Dr Adlam said: “This [award] is fantastic news. As mentioned previously, it has been relatively challenging to get funding outside of Beat SCAD and it is likely that things would have come to an end without Beat SCAD. Many thanks once again to the Beat SCAD Trustees and all your fundraisers for this amazing award.”

Rebecca Breslin, Chair Trustee, added: “The Beat SCAD Trustees continue to be amazed and humbled by the drive and determination of the SCAD community, who are committed to the charity mission to raise awareness, provide support and fund research. We are so thankful to everybody who helped to raise these vital funds and enable the charity to work again with Dr Adlam to keep the UK SCAD research project moving forward.

“The presence of a Clinical Research Fellow at Leicester is also important to support the referral clinic service provided by Dr Adlam – which in turn is an essential educator to the Research Fellow, who will learn so much about SCAD directly from the patients.

“We are eagerly awaiting news of Dr Alice Wood’s work, which might steer some of the work of the new Research Fellow, and we are excited to hear news of an appointment and welcome the newest member of the Leicester team.”

More research to beat SCAD

We are now working to raise £25,000 to support the work of the new Clinical Research Fellow. Events hosted by the charity plus challenges completed by our amazing supporters will make this goal possible.

Please help by donating here or setting up your own fundraising page.

Focus on SCAD research

Last week the NIHR Leicester Biomedical Research Centre highlighted the SCAD research being done in Leicester by Dr Adlam and his team.

The week started off with Dr Adlam talking about what SCAD is, who is affected and why it’s different to atherosclerotic heart disease. He said that until a few years ago SCAD wasn’t well-understood, but through the research team’s efforts and by working with the patient group and Beat SCAD, a lot of progress has been made.

Trustee Sarah Coombes talked about her SCAD experience and why the research is so important for patients. After her SCAD she was discharged with a bag of pills and was told there was no medical protocol for SCAD, so she was being treated under the protocol for atherosclerotic heart disease, which she didn’t have.

Sarah was among the first 100 patients who took part in the SCAD research, providing blood and tissue samples and having scans. She discovered that day that she also had fibromuscular dysplasia (FMD).

For the first time, Sarah felt heard and understood and came away from the research day feeling empowered. The research done by Dr Adlam’s team is crucial, she says, because too many SCAD patients still struggle to be believed, being told they have indigestion or anxiety, rather than a heart condition. It’s only through research that we will achieve guidelines for treating SCAD patients.

Trustee Rebecca Breslin talked about how the research began. In 2012 when she had her SCAD, aged 34, she was being treated by Dr Adlam, who, she discovered, had written a paper about SCAD. During her follow-up appointment, she asked Dr Adlam why there was no UK research to find out what causes SCAD and he said there weren’t enough patients to study – but Rebecca told him she knew of about 35 patients in the UK. This opened the doors for a research project to begin.

Rebecca also explained what participants can expect when they sign up for the research and how their help and the data the research team collect can feed into papers and the publication of new information about SCAD and ultimately improve diagnosis and treatment of SCAD.

Two-time SCAD patient Joan Errington explained what Dr Alice Wood’s research into recurrent SCADs meant to her. “I was only too happy to be included in SCAD research as a ‘recurrent’ SCAD patient,” said Joan.

“I am probably not a typical patient as I was 67 when I had my first SCAD in 2016 and 68 when I had the second. I took oestrogen-only HRT for 13 years but had stopped in 2009. I do not have FMD. I have wondered if there was a possible genetic cause for my SCADs.

“Although I had been referred to Leicester through my GP at my request, and Dr Alice Wood had arranged for me to have follow-up tests at my local hospital, I had practically no ongoing support from the various cardiologists I’d seen, so I was very happy to take part in the research programme – not just for the ‘greater good’ but also for myself!

“I’d like to think that recognition of SCAD and the use of follow-up tests has improved in the six or so years since my two events, but I can see there are still inconsistencies with diagnosis, initial treatment and long-term management.

“More research can only lead to better awareness of this condition and better outcomes for all SCAD patients.”

To finish the week off, Dr Adlam discussed some of the findings from the research so far, including the first common genetic risk variant, as well as rarer genes that might be linked to SCAD.

Thanks to everyone at the NIHR Leicester Biomedical Research Centre who put this together and to Sarah, Rebecca and Joan for sharing their stories.

Take a look at some of our research round-ups:

https://beatscad.org.uk/scad-research-updates/

https://beatscad.org.uk/research-study-looks-at-connective-tissue-and-inflammation-in-scad-patients/

https://beatscad.org.uk/research-update-september-2021/

To sign up for the research, please click here.

Santa Swim raises £550 for Beat SCAD

Thanks to everyone who took part in this month’s Santa Swim organised by T2 Events raising £550 for Beat SCAD!

The 500m open water swim, held at the Capernwray Dive Centre in Carnforth, Lancashire, was well attended and swimmers got into the spirit of Christmas with their personalised Santa hats!

If you fancy doing an open water swim to raise money for Beat SCAD, we have some charity tickets for the Fireworks 500 swim in November 2022.

Photos copyright James Kirby

Raise funds in an open water swim

We are very excited to be able to offer 20 fundraising places at a 500m open water swim! This is a great opportunity to raise money for Beat SCAD by taking part in a fantastic night-time open water swim, followed by a fireworks display!

T2 Events have kindly discounted the places for The Fireworks 500 night swim on 5 November 2022, at Capernwray Dive Centre near Lancaster.

Places are £15 each, payable to Beat SCAD, and there is a minimum fundraising commitment of £300 per entrant.

To apply for a place, please click here and complete the form. We’ll need your name, address, date of birth, email address and any relevant medical conditions. This information will be shared with T2 Events and the dive centre staff.

You will need to provide suitable equipment. T2 Events recommend wetsuits, neoprene gloves, hats and socks. The water temperature is about 12ºC but can feel lower depending on the outdoor temperature.

T2 Events also ask you to provide tow floats with lights in (this reduces the use of glow sticks, which are less environmentally friendly).

For more information about this amazing event, go to the T2 Events website. And click the button below to enter.

You can also buy t-shirts (£15) and hoodies (£25) from T2 Events via their contact page. Please let them know what size you require.

Click here for terms and conditions.

Photo: James Kirby