Cardiomyopathy Awareness Month | June 2025

Cardiomyopathy Awareness Month | June 2025

Cardiomyopathy is the leading cause of sudden cardiac death in young people, a major cause of heart failure and the main reason for needing a heart transplant.

It is a disease of the heart muscle that can occur at any age and can be passed down genetically. Often underdiagnosed, misdiagnosed, or diagnosed too late, the consequences of cardiomyopathy can be very serious. If untreated, cardiomyopathy can weaken the heart, leading to complications and more serious conditions. Cardiomyopathy affects around 1 in every 250 people worldwide.

This year’s Think Cardiomyopathy campaign continues to focus on the impact of cardiomyopathy and the importance of recognising the signs and symptoms and knowing your family history.

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Think Cardiomyopathy! Listen to your body

Think Cardiomyopathy! Listen to your body

When health signs or warnings are dramatic, we are often prompted to act. We take note of chest pain, breathlessness, and fainting. But cardiomyopathy doesn’t always show up that way. Subtle signs like fatigue, dizziness, or swollen ankles are easier to dismiss, but they can be just as serious.

It’s time to stop ignoring what your body is trying to tell you.
Speak to your doctor if something doesn’t feel right.

Think Cardiomyopathy!

“Looking back, I wish I had thought cardiomyopathy”.

Patient advocates from our community reflect on their cardiomyopathy journeys

Understand your family’s heart health

Think Cardiomyopathy! Understand your family’s heart health

Knowing if you have an inherited type of cardiomyopathy is important because it can impact the risk for other family members. Inherited cardiomyopathy is the most common form of genetic heart disease.

Paying attention to symptoms, knowing your family history, and seeking care could be lifesaving

Talk to your doctor if you notice any symptoms or have a family history of heart disease or sudden cardiac death. There is no cure for cardiomyopathy, but treatment and lifestyle changes can help control symptoms, and prevent progression and serious complications.

“Once you find that somebody has a cardiomyopathy in the family, you need to evaluate children and other adults… to see whether they also have the disease.”

Prof. Elena Arbelo, Hospital Clínic / BarnaClínic+, Spain

Six years before her daughter Judith died, her niece survived a cardiac arrest. Ruth thinks that is when they should have thought about cardiomyopathy. But they didn't know.

Ruth’s Story, Ruth Biller, Mother of Judith and founder of ARVC-Selbsthilfe e.V.

Could it be more than you think?

Think Cardiomyopathy! Cardiomyopathy can mimic other conditions. Sometimes, it doesn’t look like anything until it’s too late. If you or someone in your family has experienced:

  • Heart failure
  • Irregular heartbeat (arrhythmia)
  • Chest pain
  • Fainting or severe fatigue
  • Pacemaker or defibrillator

Sudden cardiac death in the family It could be cardiomyopathy. If something feels off, trust your instincts. Know your family history and talk to your doctor about a cardiac assessment.

“I was being treated for my asthma getting progressively worse when it was actually cardiomyopathy.”

Nicole McKelvie, Heart Failure Warriors

Know the signs and symptoms

Signs and symptoms of cardiomyopathy can vary widely. In its earliest stages cardiomyopathy may not have symptoms or symptoms may be mild. Knowledge is power.

Know the signs and symptoms of Cardiomyopathy:

  • irregular or rapid heartbeat
  • tiredness / breathlessness
  • dizziness / fainting
  • chest pain / heaviness
  • swollen stomach, legs, ankles or feet

Together, patients and healthcare professionals can spot the signs of cardiomyopathy earlier; even when symptoms are subtle or seem unrelated.

Patients know their symptoms, their instincts, and their family stories. Healthcare professionals bring the clinical insight to connect the dots. Think Cardiomyopathy!

Cardiomyopathy types:

There are various types of cardiomyopathy, each with unique characteristics and potential impacts on health. The three main types of cardiomyopathy are:

  • Dilated cardiomyopathy (DCM) – the most common type of cardiomyopathy; is inherited in up to 40% of cases; causes the muscle of the heart chambers (ventricles) to become weakened and enlarged.
  • Hypertrophic cardiomyopathy (HCM) – the most common inherited cardiomyopathy; characterized by the thickening of the main pumping chamber of the heart (the left ventricle); the left ventricle generally becomes stiffer over time and less capable of taking in or pumping out blood.
  • Arrhythmogenic cardiomyopathy (ACM) / Arrhythmogenic right ventricular cardiomyopathy (ARVC) – an inherited form of cardiomyopathy that is characterized by progressive replacement of the heart muscle with scar tissue, causing heart rhythm irregularities (arrhythmias).

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These voices remind us

Not every case looks the same and symptoms can be subtle. Cardiomyopathy is often hidden, often misunderstood.

Understand the root cause. Know the cardiac red flags. Getting to the root cause helps patients and families get the care and answers they need. Know your family history.

About this campaign:

Led by the GHH’s Cardiomyopathy Patient Council which now spans 30 patient organisations across 19 countries, the campaign this year focuses on patient and advocate stories on the impact of cardiomyopathy and the importance of recognising symptoms and knowing your family history.

Learn more

To join the campaign or for more information, please email info@globalhearthub.org.

A special thanks to those who shared their voices for our campaign:

  • Ana Morales, Genetic Counsellor, Associate Professor, Geisinger, USA
  • Prof Juan Ramón Gimeno, Virgen de la Arrixaca University Clinical Hospital, Spain
  • Prof Elena Arbelo, Hospital Clínic / BarnaClínic+, Spain
  • Linda Moloney, Cardiology Nurse Specialist, Ascot Cardiology, New Zealand
  • Prof Ruxandra Jurcut, Emergency Institute for Cardiovascular Diseases Bucharest, Romania

Patients:

  • Greg Ruf, DCM Foundation USA
  • Ruth Biller, ARVC-Selbsthilfe, Germany
  • Chloe Blair, Patient Advocate Australia
  • Leigh Bell, Cardiomyopathy Australia New Zealand
  • Anita Sabidi, Diabetes Initiative Indonesia
  • Nicole McKelvie, Heart Failure warriors, Northern Ireland