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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.