Every SCAD patient has a different experience and their events happen in varying circumstances – from post-partum and menopausal women to highly athletic men. Telling our stories is a powerful way to raise awareness of SCAD as a condition that affects a wide range of people, most of whom have none of the normal cardiac risk factors.
Thanks to those who have allowed us to publish their stories. Click on the links below to read the stories.
And if you’d like to tell us your story, you can download a story template and media release form here.
Amanda started having chest pain about five years ago and was told it was nothing to worry about. In 2020 she had more pain and was eventually referred to cardiology. However, a few days before her appointment she had a heart attack.
Later, a nurse told her if you could pick a heart attack pick this one as she would heal and that her arteries were clear. “This for the first time in weeks gave me some hope.”
Kate was 52 when she had her SCAD. Fit and active, she was on her own walking her dog when she realised something was wrong. She called the ambulance and, despite the paramedics asking the cardiac unit if they could take her there, the unit refused, so she was taken to her local A&E.
She was sent home without a definite diagnosis but three days later was back in hospital with chest pain.
Tell us your SCAD story!
If you’d like to tell us your SCAD story, please click here to download our Story Template and Media Release Form.
Send your story, photos and the signed release form to firstname.lastname@example.org.
Rebecca was just 34 when she had her SCAD. She spent 18 nights in hospital, where Dr David Adlam was one of the doctors treating her. Once home, she started to connect online with other SCAD patients and when she saw Dr Adlam again, she told him about the patient group and asked why there was no research in the UK. And so it began… she became the driving force behind initiating the UK SCAD research project and setting up Beat SCAD.
Karen was recovering from a liver transplant when she had her SCAD in 2010. Once diagnosed, she was told she was just unlucky and she’d never meet anyone else who had had a SCAD. But feeling alone, unsupported and scared, she was determined to find answers to all her questions. It took her two years to find other SCAD patients and became involved in the patient-initiated research in Leicester. Her driving motivation is not wanting anyone else to feel the way she did in 2010.
Rebecca’s SCAD happened during an operation. She had a cardiac arrest shortly after having the anaesthetic and had been put into an induced coma for two days.
“The shock of what was happening was difficult to comprehend,” she says. “I remember being very emotional and laughing and crying when talking to my daughter. I remember being very scared when I was left alone in the ICU ward. All I could hear was the bleeping of other patients’ monitoring equipment.”
A fit and healthy mum, Sarah had a SCAD while driving her son to a party in 2014. Her emotional recovery took longer than her physical one, but she gradually regained both physical and emotional strength. She started volunteering for Beat SCAD, organising the 2016 and 2018 Conferences, attending events and raising awareness of SCAD, as well as providing support for many SCAD patients. She became a Beat SCAD Trustee in 2018.
A very busy HR Director and mum, Harriet had her SCAD in 2014. Searching for information she found the research team in Leicester and went to Glenfield Hospital for lots of tests as part of a research day. The results helped her see her future wasn’t as bleak as she had initially thought. In 2016 she was a speaker at the Beat SCAD Conference, talking about returning to work after SCAD. She joined the charity as a Trustee in 2018 and continues supporting patients, raising awareness of SCAD and managing our shop.
Debbie had a SCAD at the age of 49 in 2011 and, although she was lucky her ECG showed abnormalities so was taken to a heart hospital, information about SCAD was sparse and frightening. It took six months to find any other patients who had this ‘rare’ condition and when she met some for the first time, it was a turning point. In 2015 she was invited to be a Trustee and Co-founder of Beat SCAD and has, since then, been helping support patients and their families and raising awareness of SCAD with the goal that other patients will be less isolated.
Polly had retired and was at last able to return to college to study art, but in the summer of 2017 she had begun feeling unwell after going down with what she thought was a virus. She spent two weeks in bed and then returned to college. Peeling off the old tape from her studio wall ready to start painting, she felt a severe pain between my shoulder blades, achy and nauseous and had an overwhelming sense of dread.
Sarah had a SCAD in 2016. She was been doing well at improving her fitness and losing weight when she suddenly felt ill. To her surprise, her GP told her to go to A&E and tests confirmed she had had a heart attack. She fought for a referral to a SCAD expert and is now working with Beat SCAD Trustee, Harriet, to improve access to treatment for SCAD patients in Wales.
Linn had her SCAD in August 2019. She was just 35. She says: “Chest pain and pain down the left arm are not a good combination; I knew I needed help! And fast!” After being rushed to hospital and having an angiogram, she was told she’d had a SCAD. Although it has changed her life, there are some positive things that have come out of her experience – and she offers some advice both to SCAD patients and to those close to them.
Rushing to drop her children off at school, Andrea had chest pains, her throat was dry, it was hurting to breathe and she started to feel dizzy and shaky. When she sought medical help she was told she was stressed, and anxious and was was sent away. She was still in pain the next day and, knowing something wasn’t right, she eventually had a blood test, which showed she had had a heart attack.
Charlotte’s first SCAD heart attack happened at her son’s nursery and she had to have a heart bypass. Five years later she had a second SCAD.
“The cardiac specialist nurses told me they didn’t think it would turn out to be anything to do with my heart. I just didn’t fit the profile of the typical heart patient.”
Cheryl had a SCAD exactly a year ago as she was having dinner with her husband and friends.She said: “Feeling fragile and vulnerable, I had lost every confidence in my body and I grieved for the person I used to be. I was lucky to be alive but I was scared to live.”
Colette had a SCAD in April 2018 aged 35. A slim, healthy mum of two, she felt unwell and the pain came and went over the course of a few days.
Eventually she went to hospital where the doctors gave her indigestion medication… until her blood test results came back, when they told her she was having a heart attack.
Denise was running on the treadmill when she had chest pains. She went to A&E but because she wasn’t having acute pain, she spent 48 hours on a trolley waiting to be transferred for an angiogram. Eventually SCAD was diagnosed, but with the help of SCAD experts she has returned to normal life, but doesn’t tempt fate by doing intensive exercise any more.
Jennifer had a SCAD and TIA at the age of 45. She went to A&E twice and was misdiagnosed with a chest infection, then told by her GP she had carpel tunnel syndrome. Another trip to A&E finally gave her a diagnosis.
After her first A&E visit, she was discharged and got a taxi home. She said “When I got into the taxi the driver looked at me and said ‘Should you be going home?’ as I looked unwell. Just before we arrived home I told the taxi driver that I thought I was going to die that night!”
Jenny was extremely fit, doing a 50-mile bike ride at weekends and entering triathalons, but when she had cardiac symptoms her doctors refused to consider SCAD.
“The relief that I felt when I finally got my diagnosis was phenomenal. And to think that I had been sent to psychiatry because I wouldn’t accept their previous diagnosis.”
School nurse Kim, a fit and healthy mum of three, had a SCAD in 2017 and was subsequently diagnosed with Fibromuscular Dysplasia (FMD).
“I looked completely out of place on CCU with other heart attack patients. I felt like a fraud. My husband was in shock at the diagnosis and like me thought ‘How? Why? No! That’s not right!’” she says.
The day after falling during a walk in the Lake District and dislocating her elbow, Margaret had a SCAD.
“The level of care at Blackpool was excellent and given with such kindness. They explained that so little was understood about SCAD. Dr Wood (SCAD researcher) emailed me while I was still at Blackpool and that started my journey of learning how to live with a rare disease.”
Two days after celebrating her son’s graduation in London, 400 miles away from home, Nicola felt unwell. Her daughter called NHS Direct and a first responder told her it was probably a panic attack. However an ECG told a different story. After a long recovery she has rediscovered herself through music and is now looking forward, not back.
Rachel collapsed at home and had a cardiac arrest three weeks after her baby was born. Her heart did not beat on its own again for more than 80 minutes and, as a result, she suffered brain damage.
“No-one is sure if my short-term memory will come back but I am being taught to put strategies in place to help me and to eventually be able to look after my beautiful daughter.”
Robyn was 27 when she had her SCAD two weeks after her third baby was born. Her family was told to prepare for the worst after she had a cardiac arrest.
Northampton emergency medicine consultant Dr Tom Odbert said: “Robyn was extremely lucky to be in hospital when she collapsed where she had immediate, aggressive and persistent resuscitation.”
Róisín was 38, mother of three children aged 5, 3 and 5 months, when she had a SCAD in 2013. Paramedics told her it was a panic attack and didn’t seem concerned, until they did an ECG.
Her angio showed clear arteries and doctors concluded she’d just been unlucky and told her it wouldn’t happen again… but it did.
Rose had three heart attacks in a week in November 2018 just a few months after giving birth to her second child. She was just 30, a fit and healthy mum with no family history or risk factors for heart disease.
Nicola, Rose’s mum, said: “Her third heart attack was the most serious of the three. She squeezed my hand begging me not to let her die as I comforted her, but the fear that I had at that moment and the look in her eyes will never leave me.”
Tracey was 38 when she had a SCAD heart attack and cardiac arrest. She then contracted a virus which damaged her heart further. She has now had a heart transplant and has been given a new lease of life.
“The quicker SCAD is diagnosed in a patient the easier and less invasive the treatment could be.”
Victoria had a SCAD eight weeks after her second child had been born.
“I felt like a tiny child, utterly lost and alone in this clinical corridor. I cried then, not for me, but for my children, my tiny baby who I’d left at home, my deliciously funny little three-year-old girl who was just beginning to make her mark on the world. Then I quickly felt absolutely furious, how dare this happen to me, why now?!”