Thanks to those who have allowed us to publish their stories. Click on the links below to read the stories.
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.
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.
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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?!”