Beat SCAD donates £25K to Leicester SCAD research

Beat presents £25K to Leicester SCAD research project

Thursday 13th July 2017 was a landmark day for Beat SCAD following the presentation of a £25,000 donation to the SCAD research project in Leicester.

Thanks to the hard work and generosity of the SCAD community, Beat SCAD Trustees Rebecca Breslin, Karen Rockell and Debbie Oliver (pictured above) were overjoyed and immensely proud to hand over the sum that will be used towards the salary of the new Clinical Research Fellow, Dr Alice Wood (pictured below left, with Dr David Adlam, who is leading the UK SCAD research project).

Dr Wood is a Cambridge graduate who joins the Leicester team to replace Dr Abtehale (Abi) Al-Hussaini who is returning to London to a consultant position. Dr Abi will remain involved in the SCAD research programme, as well being available to treat SCAD patients during her weekly specialist clinic.

 

Dr Alice Wood and Dr David Adlam, Leicester University SCAD research project

Since the launch of Beat SCAD in 2015, SCAD survivors, family members, friends and work colleagues have been incredibly busy completing an array of individual and team challenges as well as organising and participating in Beat SCAD events including ‘Scones for SCAD’ bake sales and walks to help raise this fantastic amount for the research programme.

Please take a moment to catch up on highlights of Beat SCAD’s first year by watching our achievements video and reading the annual report.

Beat SCAD Trustee Chair Rebecca Breslin said: “This is our first Beat SCAD donation to the research and we are so happy to present this on behalf of our patient group and supporters. It is exciting to see the money raised being put into action to further the research.

“The research is hugely important to us all and we will do everything we can to fund it to find the answers we are looking for to understand SCAD. It is vital that we keep pushing forward so we must raise more money and find other funding sources.”

Dr Adlam said: “On behalf of the research team at Leicester’s Hospitals and the University of Leicester, I would like to thank Becks and everyone at the Beat SCAD charity for their support and hard work in raising the funds to continue with this important area of research.”

After the presentation, the Trustees met with Dr Adlam, Dr Abi, Dr Wood and Cardiac Research Nurse Ellie Clarke and discussed the research status in the UK, Europe and Worldwide plus plans for next steps with the programme, including additional research team members: scientist Anna Baranowska and NHS-funded academic Dr Marios Magaritis.

Dr Adlam said: “This is an exciting time. Abi is working frantically to analyse the data collected so far and prepare articles for review and publication. We look forward to continuing to work with Dr Abi in her new consultant role in Chelsea and Westminster and welcoming Dr Wood, Dr Magaritis and Ms Baranowska to the SCAD research team. Rest assured we are working flat out with our collaborators around the world to find the answers patients are asking for.”

Rebecca added: “The UK SCAD research team is growing and research overall is increasing worldwide, which is absolutely fantastic. It really feels like progress is being made – even though we don’t have the answers yet, they feel much closer than five years ago when I had my SCAD. The Beat SCAD team feel even more compelled to raise our game with spreading awareness and raising funds for the research.”

Thank you to everyone who has supported us in any way to further the Beat SCAD mission – whether by helping to spread the word about SCAD, being a part of the support network to help others affected by SCAD, volunteering, donating, organising or participating in events. This donation is a result of your hard work and dedication to this cause.

Thanks also to the SCAD Research team at the NIHR Leicester Biomedical Research Centre (formerly Leicester Cardiovascular Biomedical Research Unit) for their continued dedication and support.

Click here for more information about the SCAD research.

Experts discuss links between SCAD and FMD at Cleveland symposium

Dr David Adlam, who is leading the UK SCAD research project attended the Second International FMD Research Network and SCAD Symposium held in Cleveland, USA on 18 and 19 May.

Some SCAD patients are also diagnosed with Fibromuscular Dysplasia (FMD), a rare connective tissue disorder, and the meeting brought together leading FMD and SCAD researchers, clinicians and patients to review current knowledge and research in the USA, Canada and Europe.

Dr Adlam said: “The meeting was attended by many of our key US and global SCAD partners: Dr Sharonne Hayes and Dr Marysia Tweet from the Mayo Clinic, Professor Jacqueline Saw from Vancouver, Professor Robert Graham from Australia, Dr Malissa Wood from Massachusetts General and Dr Esther Kim from Vanderbilt. Patient representatives included Katherine Leon from SCAD Alliance.

“Some of our friends from the European FMD world, including Professor Alexandre Persu and Dr Nabila Bouatia-Naji, were also there, as well as the leaders in the field from the US.”

The SCAD sessions included a presentation from Dr Adlam: “I spoke about the UK and European SCAD research and education programme, which was well received. It was an excellent meeting.”

He added: “There was some very interesting work presented by the FMD research groups of potentially direct application to SCAD and some important collaborative discussions.”

“We had a fantastic working group on exercise in SCAD survivors, with the main take-home messages being to encourage cardiac rehabilitation and avoid excessive restrictions perhaps retaining an advisory against ‘extremes’ of exercise.”

The symposium also included presentations in which patients talked about SCAD and FMD from their perspectives.

We look forward to hearing more over the coming months.

David Adlam at FMD-SCAD symposium

Dr David Adlam presenting at the symposium.

Thanks to Pam Mace at the Fibromuscular Dysplasia Society of America for the photo. For more information on FMD please visit the FMDSA at www.fmdsa.org.

British Cardiovascular Society journal Heart features SCAD article by Leicester research team

UK SCAD researchers Dr David Adlam (pictured above left) and Dr Abtehale Al-Hussaini (pictured above right) have had an article published in Heart, the official journal of the British Cardiovascular Society.

The educational article is also a BMJ Learning e-learning module, providing continuing education for healthcare professionals and students across the world.

Three main learning objectives focus on the patient profile and that despite historical descriptions primarily in the context of pregnancy, approximately 90% of cases are not related to pregnancy; the lack of a visible dissection flap; and the key treatment challenges.

The article covers potential associations, including emotional stress, connective tissue, autoimmune and inflammatory disorders and exercise. Management of SCAD, including stents, bypass surgery and medication such as antiplatelet and anticoagulant therapies are described, as is the risk of recurrence, exercise and post-SCAD pregnancy.

Rebecca Breslin, Chair of Beat SCAD, said: “I’m really happy to see this educational article published. Raising awareness of SCAD among medics is essential and this learning module is a great step in that process. Dave and Abi work tirelessly on the SCAD project. We’re extremely fortunate and grateful to have them working to advance understanding of SCAD.”

The UK SCAD research project was initiated by the patient group and to date around 120 patients have been seen at the research days.

Rare Disease Day focus on SCAD Research gains BBC and ITV coverage

Rebecca Breslin and ITV film crew at Glenfield Hospital

Tuesday 28 February 2017 was the tenth edition of Rare Disease Day and saw thousands of people from all over the world come together to advocate for more research on rare diseases. Many events were registered, including our ‘Scones for SCAD’ event.

Rare Disease Day is an opportunity to:

  • raise awareness of rare diseases;
  • call upon important stakeholders including researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community;
  • recognise the crucial role that patients play in research.

The SCAD community have a fantastic relationship with the Leicester research team at the NIHR Leicester Cardiovascular Biomedical Research Unit (LCBRU) in the BHF Cardiovascular Research Centre at Glenfield Hospital. Patients and researchers are working together as a formidable team, pushing forward to understand this life-changing and potentially devastating condition.

To highlight the SCAD research and patient-researcher relationship, Beat SCAD and NIHR LCBRU hosted a day of awareness and fundraising at Glenfield Hospital. Members of the SCAD community kindly shared their stories and gained some fantastic media coverage.

The day began with an important feature on the BBC Victoria Derbyshire show: Young Women who survive heart attacks.

Firstly, the story of SCAD Survivor Nicki Owen was shared by the BBC whilst Nicki attended Glenfield for her first SCAD Clinic appointment.

Nicki (pictured third from left, below) said: “I came away feeling validated, listened to, cared for. It was a brilliant day all round.”

Rebecca Breslin (left), Nicki Owen (third from left) and ITV film crew at Glenfield Hospital

Two more SCAD Survivors featured on the live programme: Kate Alderton was interviewed in the studio and Catherine Beck remotely via video link.

Kate described her experience from March 2014: “I ran a 10K race the day before, but that was nothing unusual… In hindsight, I had the classic heart attack symptoms but you don’t expect that at 30… I thought I had a chest infection… The paramedics initially thought I was having an anxiety attack but an ECG showed some abnormalities.”

Catherine (pictured second from right, below) was 9 months pregnant when she suffered a SCAD 18 years ago. When Catherine started to feel unwell one morning, she explains: “Instinct kicked in that I just needed to get to hospital but I was just looked on as a lady who was going into labour. I had vice-like chest pain and became very unwell after being sent to the maternity ward. An ECG showed my heart was in trouble. The medics didn’t quite know what to do with my pregnancy but I had an emergency caesarean and fortunately Harry was born fit and well.”

(l to r) Rebecca Breslin, Dr Abi Al-Hussaini (SCAD researcher), Catherine Beck, Fiona Bailey (Orange Juice Communications) at Glenfield Hospital

Cardiologist and Lead SCAD Researcher in Leicester, Dr David Adlam was also interviewed remotely. He began: “Like a lot of rare diseases, this condition is often under-recognised and diagnosis can sometimes be delayed. One of the things we are trying to do on Rare Disease Day is raise awareness of Spontaneous Coronary Artery Dissection and the research we are doing into it.”

Dr Adlam (pictured below with Beat SCAD Chair Rebecca Breslin) explained how SCAD is a bruise within the wall of a coronary artery which compresses the artery causing a blockage which leads to a heart attack, rather than being an atherosclerotic plaque associated with inflammation and cholesterol which causes a conventional heart attack.

Dr Adlam continued: “SCAD is a very different cause for a heart attack and as a result it is very important to recognise and identify patients who are rather different than the patients we usually see presenting with heart problems.”

Rebecca Breslin, Dr David Adlam (lead researcher) at Glenfield Hospital

Victoria Derbyshire asked Kate and Catherine to describe the impact SCAD has had on their lives.

Kate explained: “It has had a huge impact on my life. I think about it happening again every day. I do feel a lot more tired as I have quite a bit of damage – I think because I left it so long to get help… Finding a ‘new normal’ summarises it quite well… Gaining confidence again in your body when you have lost that.”

Catherine: “It is a condition I have to manage every day but I am careful, I go to the gym and I look after my health, I make sure I am resting enough. I live as normal a life as possible.”

Later in the day, Kate was interviewed by her local radio station.

Beat SCAD stand
SCAD survivors

The Beat SCAD event at Glenfield Hospital included:

  • Information stand in the main reception with leaflets about SCAD and Rare Disease Day
  • ‘Scones for SCAD’ bake sale which raised £125
  • Research participants undergoing study assessments
  • Live Tweeting of the research experience
  • NHS SCAD Clinic patient appointments
  • SCAD patients meeting other survivors (Yes, docs – this happens!)

The NIHR and BHF funded research has given great hope to the SCAD community. Approximately 120 SCAD survivors have already been assessed, their data collected and under analysis but there are hundreds more people registered who are desperate to participate in this quest for answers.

Beat SCAD stand

Research days

Samantha Roberts (pictured below left with Rebecca Breslin and Alex Mortimer) was one of two SCAD Survivors to undergo her research day as part of the Rare Disease Day event. Sam was attending Glenfield on the eve of her fifth ‘SCADiversary’. She said: “It was a productive day… lovely to see Dr Abi and Dr Adlam… and great to meet up with other fellow SCADsters… I’m glad and lucky to be part of the picture to further understanding.”

An ITV News crew filmed aspects of the event and interviewed researchers Dr Adlam and Dr Abi Al-Hussaini, SCAD survivor and research participant Alex Mortimer and Beat SCAD Chair Rebecca Breslin. Watch the feature here.

(l to r) SCAD survivors Sam Roberts, Rebecca Breslin and Alex Mortimer
Dr Abi Al-Hussaini and Alex Mortimer being filmed by ITV

Rebecca said: “Each time SCAD has featured in national media like the recent BBC and ITV coverage, we have managed to reach new members of the SCAD community: either patients with a SCAD diagnosis but otherwise limited information who have been feeling very isolated; or heart attack survivors without any understanding of why they had a heart attack who, upon learning about SCAD, suspect they fit the profile and will now ask their doctors about it. No doubt, there are more people like this that we need to reach. It is vital that we achieve that.”

Rebecca added: “It was a very enjoyable and successful day. There was a lot of interest from the public and I was able to meet a few more members of our group. I extend an enormous thank you to the Fundraising Department at University Hospitals of Leicester and to Martin Batty (BRU Manager) for permitting the event, to Fiona Bailey for her excellent PR work, and to all who helped make the day happen.”

Of course, even more awareness and funding are required to find the answers… And you can help us now with raising awareness.

CALL TO ACTION

Help us reach people by sharing information:

  • Direct your GP and other medics to our website and YouTube channel – ask them to talk to their colleagues about SCAD
  • Ask your family and friends to do the same
  • Share information far and wide via social media
  • Share your story – whether a survivor, a carer, or family member – on our website (contactus@beatscad.org.uk), contact your local newspaper, magazines, TV/radio etc.

Let’s make noise about SCAD!

Let's beat SCAD!

Martina’s bake sale raises £250 for Beat SCAD

Martina raises money for Beat SCAD

There have been lots of Scones for SCAD events going on this month to celebrate heart month and Rare Disease Day on 28 February.

SCAD survivor Martina had a bake sale at her work and raised £150 for Beat SCAD. Martina said this is the largest amount ever raised through a bake sale where she works, which is a fantastic achievement.

Match funding is a great way to boost fundraising totals and Martina’s employer, Health Management, has donated £100 to bring the total to £250. As the company is in the medical field, it was a brilliant opportunity to raise awareness of SCAD among the doctors and nurses who work at the company.

Well done Martina and thanks to Health Management and everyone who contributed to the bake sale and the donations.

Have a look at the gallery below to see some photos from the event.