About Beat SCAD
Beat SCAD is a patient-led charity that aims to support SCAD patients and their families, raise awareness of SCAD and raise funds for research into the condition. Our mission is threefold: Awareness, Support and Research.
We want to:
- Raise awareness of SCAD among medical professionals and those who have had a SCAD diagnosis
- Provide support for SCAD patients as well as family and friends
- Raise funds for research
Many medical professionals only come across SCAD in medical textbooks. We want to increase awareness among care-givers, including GPs, nurses, cardiologists, cardiac rehab teams, paramedics, midwives and more. We also want to increase awareness and understanding of the condition among SCAD patients, their family and friends and the general population. We believe increased awareness will lead to earlier diagnosis and better outcomes for SCAD patients.
For patients diagnosed with a rare or under-diagnosed condition, talking to and meeting someone who has ‘been there’, whether in person or online, is an important element in their recovery. For families of these patients, it’s often hard to understand the condition and the physical and psychological effects it can have. We hope this website will be a valuable source of support for anyone affected by SCAD.
We work closely with the Leicester Biomedical Research Centre at Glenfield Hospital, which is the leading centre of excellence for SCAD in the UK. Funds we raise will be used to support research into the condition. The SCAD research project was initiated by a pro-active patient group. Watch the video below to find out more.
Medical information on this site has been obtained from the researchers at Glenfield Hospital.
Beat SCAD Charity Number: 1164066
The Beat SCAD team
Rebecca is a Clinical Data Manager living in Leicestershire. In March 2012, age 34, Becks suffered a heart attack caused by SCAD. She had none of the traditional risk factors associated with heart attacks and despite working on numerous cardiovascular medical trials during her research career, she had never heard of Spontaneous Coronary Artery Dissection. Becks soon realised that her doctors were unable to answer her many questions as very little was known about SCAD. And so her quest for answers began.
Like many SCAD survivors, Becks was told that SCAD was rare and she would probably never meet another survivor but she found this hard to believe and set about searching. After finding other patients in the UK, Ireland and globally via social media, Becks contacted her cardiologist in 2013 to demand a UK research project. Dr David Adlam (University of Leicester; Glenfield Hospital) agreed and worked with Becks and the patient group to launch the project in 2014.
Becks served as a board member of the US non-profit organisation SCAD Research, Inc. for 18 months (2013-2015) which inspired her to establish a UK charity to continue the much needed efforts to raise awareness, support people affected by SCAD, and to support the newly established UK research.
Becks also served as a member of a Patient Advisory Group at the National Institute for Health Research Rare Diseases Translation Research Collaboration (NIHR RD-TRC) where she represented the cardiovascular theme (2015-2017).
Away from full-time work and SCAD-related volunteering, Becks is kept busy by her two whippets who help to keep her active as well as relaxed as they love a lazy sofa day watching a film or catching up on a box set!
Debbie is a Trustee and Co-founder of Beat SCAD. She had her SCAD in 2011 at the age of 49. Very little information was available about SCAD and it was six months before she found any other SCAD survivors online.
She took part in early meetings with Dr Adlam and his team at in Leicester to discuss the UK research project and has been active in supporting SCAD patients for the past few years.
In her day job, Debbie is a Production Editor at a publishing company. Her experience has been beneficial in developing Beat SCAD’s website and creating information leaflets and event collateral, as well as maintaining a social media presence. She also led the creation of a SCAD community on the Rare Connect website.
Karen is a Trustee and Co-founder of Beat SCAD. She had her SCAD in November 2010 aged 55. She didn’t find another SCAD survivor until she ‘met’ Becks and Debbie online two years later. Frustrated by the lack of information or support available for SCAD survivors and their families, she spends her ‘retirement’ working hard to change that. She has established important connections to raise awareness in the medical field, and is a Patient Research Ambassador.
Karen is a trained public speaker and gives talks on organ donation and SCAD. She has six grandchildren who keep her busy, too.
Sarah had her SCAD in 2014, age 46, while driving her six-year-old to a party. She went on to receive a diagnosis of Fibromuscular Dysplasia (FMD) as well. She found that her mental recovery took far longer than her physical recovery, so now supports SCAD survivors as an admin for the UK and Ireland SCAD Survivors Facebook group. Sarah helps Beat SCAD raise awareness of the condition by giving talks to all kinds of medical professionals. She also helps organise Beat SCAD conferences and other events.
Harriet is a Director of a Digital Marketing agency working alongside her husband, Steve. Prior to this, Harriet was a Senior Human Resources professional, with a career spanning nearly 20 years.
Following her SCAD in November 2014, Harriet left her demanding, full-time role and, having taken six months off to spend with her family, she began part-time consultancy work in the field of HR – later transitioning to her current role.
Harriet gave an inspiring and helpful talk about Returning to work after a SCAD (or not) at the 2016 Beat SCAD Conference. Harriet has also been involved in other SCAD-related volunteering including speaking at the BHF Cymru Conference in 2016 alongside Dr David Adlam; various fundraising activities for Beat SCAD and the BHF; plus ongoing efforts to improve access to SCAD experts for patients located in Wales.
In addition to work and SCAD-related volunteering, Harriet has three children who she delights in spending time with. Since her SCAD she has thrown herself into reducing the stress in her life and getting fitter: ‘enjoying’ at least two sessions with a personal trainer each week and challenging herself with ‘deadlifting’ weight training.