Signs and symptoms

“Growing up, I just thought I was out of shape. Doctors would say they heard a murmur, but that was all. There was no alarms. Once I was diagnosed, it was too far gone and following that I have had three open heart surgeries.” – Patricia, diagnosed with HCM by her GP 17 years ago.

Tired? - Short of breath? - Rapid Heartbeat? - Chest pain? - Dizzy

It’s important not to dismiss unexplained or worsening symptoms as simply a result of aging or being out of shape. Talk to your doctor to rule out any underlying health issues.

Recognizing symptoms of HCM

HCM is often referred to as a “hidden disease” because many people with it may not show symptoms.ⁱ It can be difficult to recognize symptoms because they often resemble those of other health conditions.ⁱⁱ

There are, however, common symptoms to be aware of. If you're experiencing any of the following symptoms of HCM, it’s important to speak with your doctor for proper evaluation and guidance.^i,iii

Shortness of breath

Rapid heartbeat or palpitations

Chest pain

Dizziness

Unexplained tiredness or fatigue

Fainting

While there are common symptoms to be aware of, it's important to understand that these signs could also indicate other health conditions. Only a healthcare professional can determine whether you have HCM or another health issue.

HCM can affect people in different ways. For some, symptoms come and go, while for others, symptoms can persist over time.^iv In some cases, people may not experience symptoms right away or even at all, yet the disease can still continue to progress.^v

Diagnosed with a heart murmur at age 13, Domenic attributed all his symptoms to that condition. It wasn’t until he turned 60 that HCM was diagnosed. Reflecting on blackouts on exertion which were an overlooked indicator of HCM he recalls:

“It was like someone was pulling a curtain over me. I’d stop, and it would go away. I’d start walking, and it happened again.”

HCM can affect your overall wellbeing?

HCM is a challenging condition that can significantly impact both physical health and overall quality of life. For individuals with symptoms, HCM may restrict physical activity, making everyday tasks more difficult, and, if they worsen over time, impact work and emotional wellbeing.^vi

“I know what my limits are. I do things understanding what those limits are; everything is an adjustment. I accept it and work with it.” After being diagnosed at age 50, Carlo was forced to adjust his lifestyle and live within the limitations imposed by his HCM until his doctor recommended a new treatment plan.

If you notice that your symptoms are affecting your daily activities, it's important to speak to your doctor.

How is HCM managed?

If you are diagnosed with HCM, it is important to work closely with your medical team to find the best ways to help manage the condition. This may involve:^iv

Making lifestyle updates: Adopting a heart-healthy lifestyle, including regular exercise, a balanced diet, and stress management techniques.
Taking medications: Your doctor may prescribe medications to control symptoms, improve heart function, or prevent complications associated with HCM.
Undergoing surgery: In some cases, surgery may be recommended to alleviate symptoms and improve heart function.
Attending regular check-ups: Regular appointments with your specialist healthcare team are crucial for monitoring your symptoms, assessing the progression of HCM, and adjusting your treatment plan as needed.

Downloads

Download this infographic for all the key information you need to know about HCM

References:
ⁱ Cardiomyopathy UK, (2022). Hypertrophic Cardiomyopathy Factsheet. Available at: https://www.cardiomyopathy.org/sites/default/files/2022-02/Hypertrophic%20cardiomyopathy%20factsheet%20January%202022.pdf. Last Accessed April 2024.
ⁱⁱ MyHeart.org.uk. Hypertrophic cardiomyopathy (HCM). Available at: https://www.myheart.org.uk/hypertrophic-cardiomyopathy-hcm/#%3A~%3Atext%3DNo%20particular%20symptom%20or%20complaint%20is%20unique%20to%2Cby%20physical%20exertion%29%20palpitations%20%28rapid%2C%20irregular%20heart%20beat%29
ⁱⁱⁱ British Heart Foundation, (2021). Hypertrophic Cardiomyopathy. Available at: https://www.bhf.org.uk/informationsupport/conditions/cardiomyopathy/hypertrophic-cardiomyopathy
^iv NHS, (2023). Cardiomyopathy. Available at:https://www.nhs.uk/conditions/cardiomyopathy/
^v Heart.org, (2022). Available at: https://www.heart.org/en/health-topics/cardiomyopathy/what-is-cardiomyopathy-in-adults/hypertrophic-cardiomyopathy#%3A~%3Atext%3DSome%20people%20with%20hypertrophic%20cardiomyopathy%20don%E2%80%99t%20have%20symptoms%2Cthe%20disease%20but%20may%20develop%20them%20over%20time
^vi Zaiser E, et al., (2020). Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life. J Patient Rep Outcomes. 4:102. Available at:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7708573/