Supporters walk to beat SCAD

Supporters walk to beat SCAD

More than 60 supporters joined Beat SCAD at our annual walk on 30 September. The event is a chance for patients, families and friends to meet, raise awareness of SCAD and funds for research.

In the beautiful surroundings of the Battle of Bosworth Heritage Centre and Country Park, 19 SCAD survivors plus friends, family and Dr David Adlam, who is leading the UK SCAD research, met for a picnic followed by the walk and an update on the research project.

Many patients have met on social media, but for some, this was the first time they have met in person others affected by SCAD. Sarah Elphick said: “It was great to put faces to names and to meet you all. Hearing Dr Adlam speak was a highlight and so pleasing to hear the updates.”

Diana Walker said: “It was my first walk, and great to meet other people in the same situation. Dr Adlam’s speech was really enlightening, and I have as a result signed up to be part of the research.” 

Some patients and families have attended previous walks and returned again this year, including Laura Needham, who said: “This year’s walk was fab again! Thank you for organising it all.” Louise Pike added: “All I can say is it was a beautiful setting brilliantly organised and the best bit was seeing old friends and making new ones… and it didn’t rain! As always the star was Dr Adlam.”

Martina Fletcher commented: “I really enjoyed catching up with friends and meeting new survivors. I loved Dr Adlam’s informal presentation. It was fascinating to hear the latest news.”

We were pleased to welcome Nikki Gardiner, Clinical Lead for Cardiac & Pulmonary Rehabilitation at University Hospitals of Leicester NHS Trust, and her family to the walk too. Many SCAD patients are offered cardiac rehab after their event, however the research team are aware that this needs to be adapted for SCAD patients, as most are already fit and leading active and healthy lifestyles. Nikki gave a talk about cardiac rehab at Beat SCAD’s 2016 conference and is investigating changes that can be made to the programme to take into account the needs of SCAD patients.

After the walk, Dr Adlam gave an update on the research, thanking Beat SCAD for its £25,000 donation, which has helped to ensure the research can continue.

Dr Adlam’s talk included:

  • Reassurances to the SCAD community that despite the end of the initial BHF funding that enabled 100 SCAD survivors and 40 healthy volunteers to attend Glenfield Hospital for research assessments, the Leicester research is continuing thanks to funding from Beat SCAD and the Leicester NIHR Biomedical Research Centre.
  • Updates on the progress of data analysis:
    • Blood samples are being collected for blood markers and DNA. The team will be setting up some blood clinics around the UK in the coming weeks (likely to be Cambridge, London, Oxford, Bristol and perhaps Sheffield) and will also be sending blood tubes to SCAD survivors who have not yet given a sample in the hope that samples can be taken by a GP or nurse and mailed back to the study team (in a pre-packed addressed and stamped box). Getting as many samples as possible is key to these studies so look out for yours!
    • Skin biopsies have shown some differences in the collagen of SCAD survivors compared with healthy volunteers but the significance is as yet unknown
    • A comprehensive review of coronary imaging of research participants and computer modelling of dissected arteries is advancing the team’s understanding of how SCAD develops.
    • CT and MRI scans of SCAD patients and healthy volunteers are being reviewed by FMD specialists in a blinded fashion (i.e. the reviewer does not know if the scan is for a patient or volunteer) with an aim to address the varied levels of FMD reported among SCAD patients from different countries.
    • Publication is expected in the next 6 to 9 months.
  • Updates on the research team:
    • Abi Al-Hussaini has now moved to a consultancy position in London where SCAD patients may be referred for ongoing care.
    • Abi continues to work on data analysis.
    • Alice Wood is the new research fellow at Leicester – her position is partly funded by the Beat SCAD donation from July.
    • Anna Baranowska, a PhD student is working in the lab on blood sample and skin biopsy research.
    • Adlam is collaborating with Professor Mary Shepherd, Europe’s leading pathologist, to investigate SCAD in relation to sudden cardiac death.
  • Updates on the global collaboration that is working towards the release of a Position Statement (Europe) and Consensus Statement (USA) – a major step forward in setting a baseline of clinical advice related to SCAD.
  • Comments on future funding:
    • The publication of initial findings is expected to place the research team in a stronger position to apply for additional funding sources as there are numerous strands of research being pursued concurrently and evidence to continue these pursuits.
    • Beat SCAD has an important role in continuing to contribute to funding.

Dr Adlam also took questions from the audience which included two key topics that are frequently raised by SCAD patients:

Recurrence rates

  • It is very common, and very normal, for SCAD survivors to worry about having another SCAD but this is a concern that generally reduces over time.
  • Adlam discussed the differing recurrence rates reported from different global studies ranging from less than 10% to as high as 20-25%.
  • Adlam offered some explanation in terms of an inherent bias in some studies. For example, in the UK, we have the NHS which means anyone can be referred to the Leicester research team. Whereas, in the US, there is arguably much more personal cost involved in a patient attending the private Mayo Clinic due to the different health care system, high fees, long distances to travel etc. which means the people who are more likely to invest in travelling to Mayo Clinic would tend to be the more severe cases and/or those who have experienced recurrence and are keen for expert opinion.
  • Adlam explained that imaging evidence from recurrence patients is encouraging in that the long term health outlook is still good and recurrent events tend to be minor generally and don’t usually cause severe heart damage.
  • As a further note of positivity, Dr Adlam emphasized that SCAD patients are far more likely to NOT have a recurrence so a ‘glass half-full’ outlook is strongly encouraged.

Recurrent and ongoing chest pain after SCAD

  • Adlam commented that ongoing chest pain after a SCAD event is so common that it is almost universal in the patient group, and the pain symptoms often continue for longer than doctors would normally expect in terms of healing pain – typically 6-9 months after the SCAD event. Though, patients reporting ongoing pain tend to acknowledge that it is unpleasant but not as bad as their original SCAD event.
  • The reason for this ongoing pain is not yet fully understood but Dr Adlam stated it could be related to blood vessel structure and SCAD patients may have more reactive arteries compared with the healthy volunteers.
  • Researchers are assessing the use of vasodilator medications during the first year post SCAD.

Rebecca Breslin, Chair and Co-founder of Beat SCAD, said: “The Beat SCAD walks are an important part of our charity mission to raise awareness of SCAD, provide support to people affected by SCAD and fundraise to help us on our way to our next research donation. Bosworth is a lovely venue and the weather was kind to us for the most part so we all enjoyed this year’s event.”

Dr Adlam added: “It was fantastic to spend quality time with so many patients and their families in such a beautiful setting. I very much look forward to the patient conference next year.”

Rebecca continued: “After the second Beat SCAD conference in November 2016, the Trustees decided to move the next conference from the annual slot in November 2017 to Spring/Summer 2018 for a number of reasons, the main one being to allow more time for data analysis in order for research updates to be the main focus of the next conference. Receiving an interim update on progress at the walk was a huge privilege and confirmed that we will have an incredible agenda for our 2018 conference.

“The SCAD community are very thankful to Dr Adlam for giving up his spare time to join us to walk and chat, as well as delivering such an interesting and exciting update on the research progress. It is fantastic to hear that the research team are finding leads to investigate further as well as edging closer to publishing their initial findings. Our understanding of SCAD is certainly growing but we are still chasing answers and that is why the research is so essential and must continue to be funded.”

Beat SCAD is already working towards the next £25,000 donation to help ensure the research continues and fundraising at the walk will contribute to this. The total raised from the walk is approximately £1700, so huge thanks to everyone who attended and those who supported us from afar.

 

Beat SCAD Prize Draw to raise funds for research

Beat SCAD Prize Draw to raise funds for research

Beat SCAD has launched a Prize Draw to raise money for the UK SCAD research project.

The SCAD research project has, until recently, been partly funded by the British Heart Foundation, however that funding has now come to an end. The National Institute for Health Research (NIHR) is continuing to provide some funding, which Beat SCAD and SCAD survivors welcome. However, without further funding the future of the project is at risk.

Around 120 patients have so far been on Research Days, but there are more than 500 people registered for the research, and without further funding these SCAD patients cannot all be seen by the SCAD specialists.

We want to ensure that EVERYONE who is registered sees the research team, so please help us raise the funds by selling Prize Draw Tickets.

We have some amazing prizes on offer, including 7 nights’ holiday accommodation in the Algarve, 3 nights in a beautiful cottage in Burnham Market in Norfolk, a stunning sterling silver heart pendant, a beautiful hand-made quilt – and more! Click here to see the prizes.

For tickets please click here to email us and give us your name and address and how many books of tickets you would like (each book contains five tickets).

The Draw will take place on 28 November 2017. Closing date is 20 November 2017. Full terms and conditions can be found at www.beatscad.org.uk/prize-draw-2017.

Don’t miss out on a chance to win one of our fantastic prizes!

Matt to raise money for Beat SCAD in memory of his mum Carole

Matt to raise money for Beat SCAD in memory of his mum Carole

Matt Johnson has set himself a challenge to run 56 races by the time he is 56, the age his mum Carole died following a SCAD and cardiac arrest on 23 December 2016. The challenge has two aims – to raise money to help fund research and raise awareness of SCAD.

“Carole was an incredible mum,” said her son Matt. “She always put others before herself and her children were her world.” Her death came out of the blue and her family, husband Neil and Matt’s sisters Danielle and Samantha, were completely shocked and, like many people, knew nothing about SCAD. Read Carole’s story here.

Having done some research into SCAD and found Beat SCAD’s and the Leicester research project’s websites, Matt made contact with Dr Adlam, who is leading the research. The family realised that raising awareness and funds for research is key.

“I’m hoping over the next 28 years I can do my bit in helping to find some preventative treatment for SCAD,” said Matt.

Matt’s first race, on 3 September 2017, will be the Filey Lions 10K Beach Race.

“I want to do runs in places that have meaning for my family and links to my mum.” Carole worked at the Aughton Early Years Centre in Rotherham. “I’ve chosen this race as Filey is where my mum and staff used to take some of the children and their parents from her nursery away for a short holiday every year. The race actually goes past the place they used to stay,” said Matt.

Thanks to Matt and his family for all they are doing to raise awareness of SCAD.

We look forward to hearing about the race on 3 September and will update you on dates of future races.

56 races before I'm 56

Matt is raising money for Beat SCAD by running 56 races before he’s 56

To donate to Matt’s ‘56 races before I’m 56’ challenge go to: www.totalgiving.co.uk/mypage/mjohnsonscad56

And to follow his progress, follow him on social media:

Twitter  @MJohnsonSCAD56

Facebook: 56 races before I’m 56  www.facebook.com/MJohnsonSCAD56

 

 

 

 

David cycles more than 1,100 miles to raise awareness and funds for SCAD research

David cycles more than 1,100 miles to raise awareness and funds for SCAD research

David Wring’s wife Sarah had a series of heart attacks 15 months ago, caused by SCAD. They are both committed to raising awareness and funds for Beat SCAD and the SCAD research project in Leicester, so David set himself a massive challenge of cycling from their home in Devon to Nice – more than 1,100 miles.

“My obvious motivation was Sarah’s completely unexpected SCAD episodes, but additionally the unique care from Glenfield Hospital and Dr Abi Al-Hussaini,” said David.

Sarah has never smoked, taken drugs, doesn’t drink and took regular exercise so had no risk factors for normal heart disease.

“Sarah was incredible lucky to be correctly diagnosed at Truro Treliske Coronary unit by a cardiologist Dr Audrius Simaitis, who had recently attended a cardiology seminar in New York and, fortunately, a discussion group about SCAD. But this element of luck needs to be reduced,” said David.

David’s route started on 6 July at Plymouth docks Roscoff, went to St Malo, St Quentin Sur La Homme, Vitré, Angers, Richelieu, St Savin, Bonnat, Peyrat le Chateau, Riom, St Flour, Mende, Pont d’arc, Ballon, Vaison la Romaine, Sault, Greoux, Castellane and finally arriving after 18 days in Nice on 24 July. And making the challenge even harder was the temperature, which reached 39 degrees through Provence.

Cycling 1,300 miles is no mean feat, but David explained why he took on the challenge: “I wanted to do something my friends would believe to be outside of my ability, so I chose to ride my bike from our home in Newquay to Nice – the Atlantic to the Med. I needed to buy a new bike obviously!”

SCAD awareness logo designed by David

SCAD awareness logo designed by David

“I designed a cycle jersey and had it made up. The design incorporates the heart and the bike – my new bike, Aldo, also has the logo on it.” The bike is a hand-built Donhou and the logo is hand sprayed into the finish.

He described the first part of the route: “I rode from my home in Newquay to Plymouth docks to Roscoff, then rode to Morlaix then Renn then St Malo, where I joined my support team Green Jersey French tours. We then cycled to St Michel – approx 80 miles per day.

Then we had a hilly tough day to Bonnet then onto Peyrat le Chateau, at which point I had cycled over 600 miles – and was still not half way! The country is spectacular and vast with enormous fields of sunflowers to take your mind off the long journey and sore bum!”

David made a point of telling absolutely everyone he met on his journey about SCAD, helping raise awareness, and he obviously made an impact. “One chap I met, Edwin, an expert in malaria research at Plymouth University, cycled with me from Roscoff to Morlaix, helping to carry my bags,” he said. We said goodbye at Morlaix and on his return to UK he donated £50!”

Steep challenge

On his designated day off he met two rugby players, who offered him £200 to ride up Mont Ventoux. He was also challenged to wear a tricolor club jersey (see photo). He accepted both challenges.

Ventoux-summit

David at the top of Mont Ventoux – this challenge raised an extra £200

“The climb is a renowned killer with a 9% hill for 22km. It took me 2 hours 15 minutes to ride up that hideous climb, but it was worth £200 for the cause,” he said.

Towards the end of the challenge, he cycled from Gorges de L’Ardeche to Vaison la Romaine. “After the climb out of the gorge, the most stunning road opened up and the ride along the top of the gorge was simply the most spectacular I have ever ridden. After the gorge, we then crossed the Rhone and into Provence following the mighty Mont Ventoux with its white stone cap. The heat was intense – at 39ft my water bottles were really warm, which made hydration tough and no businesses were open and the roads and streets deserted.

“The journey became painfully slow but eventually we made the hotel and, with 2 litres of cold water drunk, the dizziness passed. I’ve never known a taste so sweet as that cold water and it will be one of my top memories.

“Total miles ridden 926!”

On the penultimate day, David had “a spectacular day riding through the Gorges Du Verdon, in south-eastern France. It’s a river canyon with loads of man-made beaches along the edges and it is considered to be one of Europe’s most beautiful areas – I would have to agree it’s stunning! It is about 25km long and the granite walls tower above and in places overhang the road. Awesome scenery throughout, which eased the gradient! Total miles ridden 1,069.”

David completed his cycle in the beautiful city of Nice on 24 July – saddle sore, aching but celebrating his fantastic achievement.

Dave at the end of his mammoth ride in Nice

Dave at the end of his mammoth ride in Nice

The generosity of the people he met and those who have donated via his Just Giving page has been fantastic, but one man stuck in David’s mind.

“When I took a taxi from Clifton Bristol to Temple Meads train station, the driver was Mohammed, a Muslim immigrant from Somalia, in full dress and skull cap. We chatted for the entire journey and when he dropped me off I asked what the fare was. He told me it was £10 and as I went to the boot to collect my bags he extended his hand we shook hands. I felt paper in my hand he closed it and wished me and Sarah good luck. I thought it might be a prayer but it was a £5 note! It made me genuinely cry as this was more than he could possibly afford!”

He has so far raised £2,327 and is hoping to reach a grand total of £2,500. The Just Giving page is still open, so click hear to donate to help further research into SCAD. 

David cycling for Beat SCAD

David cycling for Beat SCAD

David’s determination to complete the challenge can be summed up by his comment about the punishing climb up Mont Ventoux: “I constantly thought of Sarah on the climb as the heat and the pain in my legs were unbearable, but Sarah has never once complained about her SCAD episodes so my effort was nothing in comparison!”

Well done and a massive thank you to David (and his support team) for completing this mammoth challenge. We hope your aching muscles recover soon!

See below for a slideshow of more photos from David’s trip.

 

Beat SCAD donates £25K to Leicester SCAD research

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 UCL 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.