Claire's Story

Your stories 25 July 2022

Claire’s brother Andy was diagnosed with hypertrophic cardiomyopathy (HCM) in July 2020. Claire has shared her experience with us and how it influenced her to take on the TCS London Marathon 2022 as part of #TeamCardio.

My brother Andy was 35 when he was diagnosed with hypertrophic cardiomyopathy, and he had no obvious symptoms before the diagnosis. After some standard tests for something unrelated, he was found to have high blood pressure, which he was completely unaware of at the time. After further investigations with his GP over the course of several months, tests showed his blood pressure was still high, and even with medication, it remained unpredictable. At this point, he was referred to the hypertension clinic for further investigation. The clinic managed over time to get his blood pressure under control, but after performing an ECG, he was referred to a cardiologist for further testing. The cardiologists performed more tests and scans, and in July 2020, my brother was diagnosed with hypertrophic cardiomyopathy with severe septal hypertrophy.


The consultant advised that they had been unable to find any genetic “misspelling” that may have caused the condition, and my brother was encouraged to contact all his immediate family to seek testing as soon as possible, as there was no known family history of the condition. Since my brother’s diagnosis, I dug into the family tree and found out that our paternal grandfather died young, at the age of 40, and his death certificate lists heart failure and coronary artery occlusion as the cause. So, we’re not sure if this may indicate previous family history. My sister and I have both been tested and show no signs of the condition. We’ve been advised to have repeat testing in three to five years to check that we still have no symptoms.

The process of receiving a diagnosis took around a year, which was unsurprising given the volume of different tests and checks. At the time the process felt a bit unclear, and although Andy is very laid back, he and his wife didn’t always feel they understood what was going on, why certain tests were needed (or repeated), and what they were actually checking at each point.

When he received his diagnosis, he was rather shell-shocked initially, so much so that he was struggling to remember the name of the condition. On leaving his appointment he became really concerned for his immediate family, as the consultant urged him to get all of us to get referred for testing. My brother was especially concerned for me, as I was 32 weeks pregnant at the time of his diagnosis and the consultant made it clear to him that I needed to be checked before the baby arrived. He was on the phone with me within an hour of his diagnosis to try to explain the situation to me, a situation he didn’t quite understand himself. His call was very out of the blue, in the middle of the day, but it left me really concerned for him, both in terms of his health but also the impact the diagnosis could have on his young family.

While I understand that not every condition has visible symptoms and there has been some media coverage of high-profile cases in the last few years (among footballers), the automatic assumption of most people is that you will appear rather ill if you have a heart condition and won’t necessarily be able to take part in everyday activities that most people take for granted.

He’s had to slow down a bit and accept that he may not be able to do all the things he did previously. He’s had to make some lifestyle changes to keep him healthy. He’s also gone back to having a very “live in the moment” view on life, being less keen to plan too far ahead.

He doesn’t let the condition rule him, but he is aware that he’s being advised to have surgery within the next five years. He is somewhat reluctant to discuss this too much because he doesn’t want to worry his immediate family. He doesn’t really mention much in the way of symptoms aside from ones related to the medication that is used to control his condition and the main one there is increased fatigue and tiredness.

Andy’s condition is severe and although it is regularly monitored, he will need surgery before he turns 40. As a big sister, you always feel it’s your job to fix things for your younger siblings, but I can’t fix this for him, so I’m doing the next best thing and raising money to support the work of those who can. That’s why I’m running the London Marathon for Cardiomyopathy UK. 

If you want to help raise funds for Cardiomyopathy UK, why not follow in Claire's footsteps and take on the 2023 TCS London Marathon? Find out more here. 

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