‘Be your own advocate’ says SCAD patient Catherine

Cardiac rehab nurses

Catherine (pictured left above) had a SCAD 23 years ago, when there was very little information available, no support groups and no research into the condition. Here, she reflects on her experience, how the Covid pandemic brought back some of her post-SCAD fears, and how becoming a Beat SCAD Buddy has been one of her highlights.

“As I approach my 23rd year following a pregnancy-related SCAD (P-SCAD), it seems a good time to share some of the positive developments since those early days of my diagnosis in 1999.

“Having a first baby and a SCAD heart attack on the same day was life changing in many ways. The roller-coaster of emotions and the physical challenges often described by other SCAD survivors were shared by me.

“The internet and social media were in their infancy. Very little was known about SCAD, which was probably why it took me two years to even hear about another person in the world who had had one – and they lived in America.

“There really was, I felt at the time, no support.

“Thankfully so much has changed for the better thanks to SCAD research and the Beat SCAD charity.

“However, it saddens me to still hear SCAD survivors being dismissed and told to forget about it, so there is always work to do. We thankfully now have so much support and information to hand.

“In my experience it is so important to be our own advocate in relation to our post-SCAD recovery, not always easy I know.

“I found attending the early SCAD meetings organised by Dr David Adlam, who now leads the UK SCAD research, with others who had had a SCAD so positive. It was also quite surreal being in a room with so many others who had experienced a SCAD.

“Being part of the research on an ongoing basis is welcomed by me.

“In the early months of Covid, prior to vaccinations, I remember having feelings similar to those I had in the early post-SCAD months. All the emotions about feeling anxious and the risks I felt it was OK to take, resurfaced for a while.

“Thankfully the vaccinations programme helped me move on to a normal life once more. If anything, Covid has reinforced the importance for me to push forwards, live in the moment and not dwell too much on the past.

“I should say it has taken years to reach this stage and it has not always been straightforward. So now I take my tablets each morning and look after my physical and emotional wellbeing.

“Being asked to be a Beat SCAD Buddy is another highlight for me and an important role in supporting others that have had a SCAD. I have made such good friends from the world of SCAD including the two here in a recent photograph at Glenfield Hospital – Dr Adlam and fellow SCAD patient Jacqui Hughes.”

Thank you, Catherine, for sharing your thoughts, we hope other SCAD patients will find them helpful.

Catherine is a retired Health Play Specialist and helped us create a leaflet with tips on how to talk to children about SCAD.

Click here for information and advice on living with SCAD.

Amy’s Great North Fundraising Run

Cardiac rehab nurses

Amy Porter started running during the first Covid pandemic lockdown and has now set herself the challenge of doing the Great North Run half marathon in September to raise money for Beat SCAD.

Amy told us: “Completing an event like the Great North Run has always been on my bucket list, so when receiving a place in this year’s event it gave me a great opportunity to run on behalf of Beat SCAD, as this charity means a lot to me and my family since my Mum unexpectedly had a SCAD in 2016. My hope and motivation are to raise funds and awareness, in order to help keep the research and conversation about SCAD going and saving lives.”

Amy’s mum, Nicola’s SCAD happened when they were in London celebrating Nicola’s son David’s graduation. They were hundreds of miles away from home in the Scottish Borders.

“Initially after it happened there was a lot of worry, shock and uncertainty as a SCAD wasn’t something any of us had heard of before; it took a while to get our heads around it and understand what it meant for my Mum,” said Amy.

“We feel extremely blessed and grateful my Mum survived, received the help she needed at the time, and subsequently, from both the NHS and Beat SCAD and has recovered well. Over time we’ve come to understand and accept the condition, but it has also given us a greater appreciation of our time together as a family and not to take any of that granted. I think about the day my Mum had the heart attack all the time and how brave she was that day and every day since then – she is my inspiration and along with other families affected by SCAD are my motivations for the Great North Run.”

Couch to 5K… to the Great North Run

During the first lockdown of the pandemic, Amy started running by trying out the Couch to 5K challenge.

“Like many others at the time running became my escape from the world and really helped me focus on something positive. I’ve continued running since then, running a couple of local half marathons last year – but nothing on the scale of the Great North Run!” said Amy.

“I started focusing my training for the Great North Run in March and have tried to use it as a chance to explore more places and running routes locally. My brother, David has also been a great support in my training by joining me on some runs and talking all things running with me! Running has given me an outlet and time to process what happened with my Mum – so doing the Great North Run seems like a fitting way to be thankful for this, give back to Beat SCAD and mark my Mum’s sixth SCADiversary this year!”

As part of her training and get more race experience, Amy is taking part in the Great North 10K in Newcastle on 3 July – we’re looking forward to hearing more about that!

Amy says Beat SCAD helped both Nicola’s recovery and the family’s.

“Beat SCAD has provided invaluable support and advice to my Mum by giving her access to medical information and putting her into contact with other SCAD survivors to share experiences and provide mutual support. This has been a lifeline and ensured she has not been alone in her recovery – this support has been an enormous help and has extended to us as a family. We can’t thank Beat SCAD enough for their hard work, dedication and communication throughout the last few years.

“One example of this was the Beat SCAD Scottish Patient group sponsored walk in Edinburgh in 2019 where we met other SCAD survivors and their families – it was a great chance to hear other people’s stories, connect with each other and build much needed community.”

Nicola said: “Amy was with me when I had my SCAD and she was so amazing with how she looked after me in the trauma and shock of the moment when it happened. Now five years on I am so proud of how well she has coped with it all and has been such an invaluable encouragement to me throughout my recovery. After taking up running through lockdown Amy has shown real dedication and perseverance with her training and preparation for the Great North Run; her first big race. Running to raise money for Beat SCAD and to support this small patient-led charity is such a special thing and will help so many SCAD survivors. Thank you, Amy, you are one incredible young woman and I am so proud to be your mum.”

We asked Amy what she hoped the money raised would be used for. She told us: “I hope it will be used to support other SCAD survivors and their families like us and to continue the much-needed research so SCAD can be accurately diagnosed and treated more effectively. I also hope there will be a much greater awareness and understanding about SCAD which may in time lead to prevention.”

Click here to read Nicola’s SCAD story.

Thank you, Amy and all those who are supporting her and fundraising for us. Click here to see Amy’s fundraising page and donate.

Cardiac rehab nurses

Cardiac rehab team learns about SCAD

Cardiac rehab nurses
When Theresa Windsor (pictured above centre), an Advanced Nurse Practitioner with the Cardiac Rehabilitation service at Milton Keynes University Hospital, began caring for a SCAD patient, she didn’t know anything about the condition. She did some research and found Beat SCAD’s website and downloaded some of the support leaflets for her patient. Theresa also recommended her patient joined the SCAD UK & Ireland Survivors Facebook group to get some peer support.

The information on our website made Theresa want to learn more about SCAD, so she emailed us. We arranged for Co-Founder Karen Rockell to visit the Cardiac Nursing Team on 12th May to give an educational talk to the team of five.

“It was a lively session with lots of questions about SCAD and FMD (Fibromuscular Dysplasia, a condition associated with SCAD), how they are diagnosed and treated, and how to help patients,” said Karen.

After the talk Theresa said: “Your talk was very informative, I will definitely be trying to improve the outcomes for our SCAD patients.”

Educational talks about SCAD/FMD are available for Midwives, Paramedics, A&E staff, Cardiac Rehabilitation and Chest Pain Nurses. They can be delivered either via an online meeting platform or face-to-face. Please email contacus@beatscad.org.uk to arrange a session.