I was diagnosed with subclavian steal syndrome in Liverpool around ten years ago. At first, I had no symptoms and continued to lead an active life, travelling all over the world in my motorhome and cycling regularly.

Subclavian steal syndrome involves a blockage in one of the subclavian arteries. There are two subclavian arteries, and my blockage is on the left-hand side. I have very little pulse in my left arm. As I understand it, the blockage affects blood flow to my arm and diverts blood away from where it should normally go. The condition is called “steal” syndrome because blood is redirected towards the arm.

I had never met anyone else with it. When I spoke to different doctors, some said they had never heard of it. Another doctor told me she had only seen two people with the condition, and I was one of them.

Over the past year, my symptoms have worsened. I experience blurred eyesight, fatigue, balance problems, leg cramps and pain, and difficulty walking any distance. If I walked from Marks and Spencer through town to the other end, I would not be able to walk back. I cannot walk up an incline without using a handrail, and I pull myself up the stairs using the handrails.

I have also had occasional chest pain and pain in my lower jaw. I have been told to call 999 immediately if my left arm changes colour or becomes painful. The possibility of a stroke is also frightening.
I have always been a very active person. Now, I cannot walk very far and cannot take part in some of the activities I once enjoyed.

I belong to a retirement association with several groups, including a walking group. The condition is now preventing me from attending activities that I used to enjoy. I have missed many sessions because I do not feel well enough or cannot manage the journey.

I struggle in heated rooms and often need a fan. I carry paper fans in my handbag and have three electric fans at home. My sleep is also disturbed by pain in my arms and legs.

I live alone, and it can be difficult when you cannot get out and take part in the things you used to do. I sometimes need to use taxis as well as buses, which can become expensive.

Over the past year, I have had several scans, including a scan of my legs because of the pain and cramps. I am also due to have a heart scan, which will allow specialists to look at my heart in more detail.
I was initially placed on a two-year waiting list, so I decided to seek a private consultation in Liverpool. Since then, I have seen several cardiologists and surgeons, and I now have an appointment in Liverpool to discuss surgery.

I understand that a stent is not suitable in my case and that other options are being considered. I am still trying to understand exactly what will happen and what treatment I will be offered.

Subclavian steal syndrome is rare, and many people, including some healthcare professionals, may never come across it. I had never heard of it before I was diagnosed.

I hope that sharing my experience helps people understand how a rare condition can affect mobility, independence and everyday life. I am still trying to do as much as I can on the good days, but my condition has gradually limited many of the activities that once made my life so active.

Phyl

I was diagnosed with subclavian steal syndrome around ten years ago

Paul

Paul was 57 when he experienced a pain like no other in his back. We never imagined what was happening.

I have always led a very active life here on the Island. Whether it’s riding horses, cycling, walking the dogs or playing a competitive game of badminton, I’ve never been one to sit still. That’s why what happened in June 2025 came as such a complete shock.

I was at the NSC finishing a tough game of badminton when I suddenly felt overwhelmingly exhausted. As I walked to the car, I had to stop just to catch my breath. I felt sick and dizzy, but I assumed I had simply overdone it. On the drive home, I developed a sudden, sharp toothache on my left side. It felt very strange, but I never imagined it was my heart.

By the time I got into the house, I was feeling weak and wobbly. I had nausea and stomach pains that felt like period pains, which made no sense at my age. Thankfully, my husband took my blood pressure and noticed I looked grey and very lethargic. He called A&E, and I was taken in, where I was eventually told I had suffered a heart attack.

Because I also had COVID-19 at the same time, I spent a week in isolation at Noble’s before I was well enough to be flown to Liverpool. Once there, an angiogram revealed that two of my arteries were completely blocked, likely due to high cholesterol. I had assumed I would need a simple stent, but instead I was told I needed a double heart bypass.

The surgery was major, and the recovery was a slow and emotional journey. When I returned to the Island, I felt extremely weak and exhausted. However, I’ve always tried to stay positive. With the support of the cardiac rehabilitation team and my family, I began rebuilding my strength bit by bit.

Today, over six months later, I am back on my bike, back on my horse, and back on the badminton court. I want to share my story because, as women, we are often not told the symptoms to look out for. I didn’t have the ‘typical’ chest pain—I had a jaw ache and overwhelming exhaustion. We need to close that gap in awareness so other women on the Island know when to seek help.

I feel very lucky to have had what feels like a ‘quick fix’ and to be able to move forward with my life again.

Kathryn

As someone who was always active and competitive, I never thought a heart attack would happen to me.

It started when I was about 12 or 13. I’d be sitting down or exercising and suddenly my heart would start racing—sometimes up to 200 beats per minute. At the time, it was put down to anxiety. Because I was a healthy kid, no one suspected a heart condition, so I just lived with it until I left school at 16.

I started an apprenticeship as a plumber, and during the 2020 lockdown, things changed. I was walking when I felt an attack coming on. This time, it was followed by a strange sensation—like my heart had dropped off a rollercoaster—and then a sharp pain began radiating down my left arm.

Over the following months, I began blacking out. I’d pass out at work, at home in the corridor, or even in the shower. I knew then it wasn’t just anxiety. Eventually, I was referred to a specialist in the UK, who diagnosed me with a severe form of SVT (supraventricular tachycardia).

At 17, I flew to Liverpool for a cardiac ablation. What was supposed to be a simple 90-minute procedure turned into a nine-hour operation because my heart is shaped slightly differently from most people’s. I was awake the whole time. It was terrifying, and the recovery was even harder. I returned to the Isle of Man in a wheelchair, had to self-isolate due to COVID restrictions, and found myself struggling both physically and mentally.

Shortly after, I was diagnosed with pericarditis—fluid around the heart—which required further treatment. The cardiac depression that followed was a real battle. I felt like a shadow of my former self, unable to do the job I loved or take part in the sports I enjoyed.

With the help of a local personal trainer in Ramsey and the support of the community, I began the long process of rebuilding myself. It took years, but that surgery gave me my life back.

If I could give any advice to others on the Island, it would be to trust your instincts if something doesn’t feel right, and don’t be afraid to ask your family about their medical history—I only found out after my surgery that heart conditions ran in my family.

Will

I was 12 or 13 when my heart started racing; it shows that age is no barrier to heart conditions.

Our Island Stories

Every heart on the Isle of Man carries a story.

We bring together the lived experiences of people across our Island facing cardiac conditions.

These are personal accounts from neighbours, friends and colleagues, offered to help others recognise warning signs and feel less alone. Through these voices, we aim to strengthen understanding, inspire reassurance and shine a light on the resilience within our community.

Phyl

After years of travelling and living an active life, Phyl’s rare condition is now affecting her mobility, independence and ability to take part in the activities she loves.

Paul

Paul initially thought the ripping pain between his shoulder blades was another bout of back pain. As aortic dissection is rare, most people have never heard of it, but recognising the signs can be vital.

Kathryn

I thought I was just exhausted after a tough game of badminton, but a sudden toothache and a feeling of being 'wobbly' turned out to be the signs of a heart attack.

Will

At just 13, I started experiencing heart rates of 200 beats per minute. What was dismissed as anxiety turned out to be a life-changing heart condition.

Contact

Manx Heart Foundation

7 Ballacriy Park,
Colby
Isle of Man
IM9 4LT

info@manxheartfoundation.com

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