What it’s like facing a heart condition no-one has answers for
Becks Breslin pioneered the first patient-led study, funded by the BHF, into an unusual cause of heart attack called SCAD. The team of researchers in Leicester are faced with no small task, as they try to understand the condition that has doctors stumped.
Four years ago, Becks Breslin lived contentedly in a small country town with her husband Liam and their two whippets.
I couldn’t breathe
“I woke with a crushing sensation in my chest. It felt as though someone was pushing me down onto the bed, with all their force. Pain started to radiate through my jaw and down my arm.
It took my breath away.
I found myself methodically working through a checklist of heart attack symptoms I knew about. Pain in my chest — tick. Jaw– tick. Left arm — tick. Nausea — tick. Difficulty breathing — tick.
Everything was pointing to this person having a heart attack. But surely that person couldn’t be me?
I’m young, active and healthy. This doesn’t make sense.
For hours I prayed the pain would pass but eventually I was defeated. Even picking up the phone was extremely painful, but I forced myself — I called my sister.
Her husband rushed to my house. The moment he saw me, he dialled 999.
Surrounded by uncertainty
From the moment I arrived at hospital, I was plunged into a world of uncertainty. Not only was I confused as to what was happening to me, the doctors were too.
After being rushed to the catheter lab, the doctors could see, by looking inside the coronary arteries of my heart, that there was no plaque in my arteries. I hadn’t had a classic heart attack.
Instead, they found a tear (or a dissection) in an artery.
What do we know about SCAD?
A SCAD is a tear in the wall of a coronary artery, allowing blood to escape the vessel and collect in the artery walls. This collection of blood forms a blood blister, putting pressure on the vessel and restricting blood flow to the heart.
In hospital, alone, and in desperate need of answers, I scoured the British Heart Foundation website and read about a rare heart condition called SCAD.
I read intensely, ‘SCAD is a rare condition of unknown cause, which predominantly affects young, otherwise healthy women.’
Despite doctors knowing I hadn’t had a classic heart attack, they didn’t know what else to do with me other than to feed me a cocktail (not the good kind) of heart attack drugs.
My cocktail was changed as many times as my bed sheets! It felt as if my medical team, the ones you expect to have the answers, were stabbing in the dark.
Honesty is refreshing
During one of my 18 days in hospital, a new doctor arrived to see me — Dr David Adlam. I soon found he had a different presence to the others.
He spent time discussing SCAD with me, my husband and my sister. He explained what he did know, but above all he told us how much was unknown. A lot.
Despite still not having answers to my burning questions — Why does SCAD happen? Why has this happened to me? How can this be treated? — his honesty gave me huge relief. He was open about not having the answers.
That’s how research seeds are planted — questions demanding answers.
I went to sleep that night with less worry that I would die in my sleep, and more hope for the future.
The start of a partnership in research
Looking back to one of my follow-up appointments, I remember bringing a folder of SCAD journals with me. When asking questions about my condition, I was faced with rolled eyes and half-hearted answers.
Imagine facing a diagnosis which no-one understands yet.
So many emotions come into play — fear, anxiety, frustration.
I drove home that day, tears of anger and frustration rolling down my cheeks.
Dr Adlam had been an exception among the doctors I’d seen, and so three months after making it home, I got back in contact with him. No SCAD research was being carried out in the UK. This had to change.
It was ambitious, but I put my idea to him, that we should start the UK’s first clinical trial into SCAD, with 100 patients, to try and learn as much as possible about this mysterious condition.
Dr Adlam didn’t hang around. Within a week we’d started the ball rolling.
Backed by the British Heart Foundation
He put in an application to the BHF, and it was successful. Dr Adlam was awarded a grant for the research. Thanks to this funding from the BHF, our idea started to become a reality.
When we started, we thought it ambitious to find 100 patients to take part in the research. Now, three years on, over 500 patients have registered to the trial. And the numbers of those eager to take part just keep growing.
Looks like SCAD’s not so rare after all…
Some scientists have loosely divided those affected by SCAD into three categories:
• Late pregnancy
• Just before menopause
• Vigorous exercisers
Despite many SCAD patients falling into one of these categories, I don’t fit into any.
This shows that even our basic understanding of whom SCAD affects, needs to be re-thought.
Getting to grips with SCAD
To try and get an insight into why SCAD happens, BHF-funded research fellow Dr Abi Al-Hussaini, is carrying out a range of tests on SCAD survivors.
From ultrasounds of the neck and arm vessels, to looking at the heart’s structure.
Research inspired by SCAD survivors
Because so little is known about SCAD, Dr Adlam and Dr Al-Hussaini’s next research questions are solely led by SCAD survivors — what we’ve experienced, what we feel.
Who better to base SCAD research on than those who live with it every day?
In a way, we’re all co-investigators. It’s an exciting way to research, and one that gives people like me who have suffered a SCAD (we call ourselves the SCADsters), great hope.
Because most SCAD survivors in the trial are women, Dr Al-Hussaini wants to look at female hormones and whether they could play a part in why SCAD happens.
Could gender, something I have no control over, have caused my SCAD?
The research team noticed that many SCAD patients were very flexible. This prompted Dr Al-Hussaini to question whether hyper-flexible vessels might be more prone to tears.
Now, the team want to look at the flexibility genes of SCAD patients and their families.
Could they find a gene linked to SCAD? So many questions remain unanswered. But we’ve started our voyage of discovery, survivors and researchers together in the driving seat.”
What do you think about Dr Adlam’s SCAD research?
Watch our video below to find out more about Becks’ and Dr Adlam’s amazing story.
Christie Norris, Research Engagement Officer at the BHF