I had a SCAD in November 2014. Prior to this event, I was a very busy HR Director working 60+ hour weeks, mum of three lovely people and generally living my life to a vague plan, blissfully unaware that the rug was about to be yanked from under my feet.
Following the diagnosis of SCAD and initial treatment at UHW Cardiff, I began a search for any information about this rare and little-known condition. I felt isolated, traumatised, totally outside the norm of the average cardiac patient if my fellow CCU inhabitants were anything to go by and, whilst trying to be positive, fairly uncertain about my future.
At age 44, having had no prior symptoms and with no apparent risk factors, being told you have heart disease, that you’ll likely take medication for the rest of your life and that you need to make changes to your life in order to survive are fairly tough things to hear.
All I seemed to have was a long list of questions that no-one had solid answers to.
There was a lot of sympathy and care (in the main) but not much expertise or detail available. I like to know the skinny, to have the details and to be informed. This way I feel I’ll be able to make the best decisions for me and my family.
Discovering more about SCAD
After much internet searching, I discovered Dr David Adlam and his Research Fellow Dr Abi Al-Hussaini (or Dr Abi as I now know her) at the Glenfield Hospital in Leicester. They were running a research programme for people just like me. Not only would I be able to get some answers about my unusual condition, but I might also be able to help others who were in the same boat. This was terrific news. I registered, was accepted and got a date to attend for a research day in August 2015. The fact that they were accepting 100 patients initially and I was one of the lucky ones, made me realise how few people had been diagnosed with this condition.
On the day, I met Dr Abi early in the morning and underwent a string of tests, all designed to help her understand my SCAD and my body. These included MRI and CT scans, blood tests, some physical exams and a long Q & A. She was also able to examine my angiogram from the day of my SCAD and so could see what the Cardiology team who treated me had seen at the time.
I believe that, at that time, Dr Adlam and Dr Abi are the only doctors in the UK that have had the opportunity to review hundreds of angiograms in this way, thus making them uniquely placed to be the experts in this matter.
Dr Abi and I were able to look at some of my results together, there and then, and she was able to offer me her expert advice and opinion – something that I now appreciate is utterly priceless. She was reassuring and empathetic, professional yet entirely human, answering every question I had in detail and able to illustrate her answers with evidence from our day together.
Most importantly for me, we were able to look at MRI scans of my main vasculature, reassuring me that there were no immediate causes for concern. We were able to agree that actually my future looked a lot less bleak and distinctly more rosy.
That’s one of the main problems when you’ve had a SCAD – the ‘spontaneous’ part tends to make you incredibly anxious about what might go ‘pop’ next and when.
I also felt proud that I was contributing to the knowledge bank around this little-known condition; that my data might help to unlock secrets not yet shared; might help put some of the puzzle pieces into place and I that could help future SCAD patients in their recovery, maybe even prevent this from happening to others. The fact that there is also collaboration on an international scale makes this even more exciting and a realistic prospect for the future.
This day spent in the company of caring professionals who are expert at what they do allowed me to make the active decision that I had to live my life to its fullest and make positive changes that would mean I was happy and healthy for the future. Since this day, Dr Abi has moved to Chelsea & Westminster Hospital where she does wonderful work supporting SCAD patients in her clinic. Dr Alice Wood is now the Research Fellow working with Dr Adlam and they make an equally awesome team.
My SCAD is a prominent and important milestone on my roadmap, but it doesn’t overshadow and terrify me. I am certain that a large part of that is down to the opportunity to participate in the research day with Dr Adlam and Dr Abi and for a little bit of their incredible knowledge and insight to rub off on me.
Supporting other patients
Subsequently I was offered the opportunity to talk at the 2016 Beat SCAD conference, only the second to be held in the UK by this inspiring, patient-led charity. I jumped at the chance to help support other patients, many of whom had their SCAD after me, by using my HR expertise to talk about returning to work post-event. It was a real honour to be asked I have also enjoyed hugely helping other patients who have concerns or questions about going back to work or dealing with their employer.
In April 2018, I was delighted to be asked to join Rebecca, Debbie and Karen as a Beat SCAD Trustee, along with Sarah. This wonderful, inspiring and energetic group of women have done so much to help the UK and Ireland SCAD community, so to be considered a candidate to join them in their mission of raising awareness, funding research and supporting others was hugely flattering.
I was a Trustee for five years and, my contribution largely centred around raising awareness of SCAD as a condition, our work with Beat SCAD and supporting other patients in Wales, as well as the larger aims we have as a charity. I have been able to make great connections with All Wales Cardiac Rehab group and the Welsh Ambulance Service Trust (WAST), conducting presentations, Q & As, as well as meeting with the WAST Quality and Patient Experience Board. Sadly Covid-19 has placed a temporary hold on meeting with the Welsh Cardiac Network but once these meetings are able to go ahead again I look forward to carrying on this important work.
I also managed the online Beat SCAD shop, ensuring that we have merchandise for sale to help fund the UK research programme and other initiatives the charity supports. As a child one of my favourite hobbies was to play ‘shop’ and to be able to carry this out in real life is a dream come true! The customers really are a very special bunch.
Beat SCAD is extremely important to me and being a part of it is hugely rewarding. To have been able to achieve such success in the first five years is awe-inspiring and I can’t wait to see what we can all achieve in the next five.