Cardiomyopathy Awareness 2024
Think Cardiomyopathy

Cardiomyopathy affects around 1 in every 250 people worldwide. 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 complications and to more serious conditions.

Follow the campaign using: #ThinkCardiomyopathy | #CardiomyopathyAwareness | #Cardiomyopathy2024 | #ThinkCM

Ruth’s Story

Ruth’s daughter, Judith, died suddenly in 2011 at 14 years old from sudden cardiac death as a result of undiagnosed cardiomyopathy.

Cardiomyopathy is a disease of the heart muscle that can occur at any age and can be passed down genetically. It is a predominant cause of sudden cardiac death in people under the age of 35.

Following genetic testing and investigations, Ruth discovered that both her husband and son were gene positive for the same cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy (ARVC).

It’s time to take notice of cardiomyopathy. You or a loved one could unknowingly be at risk. Think Cardiomyopathy. Watch Ruth’s video to learn more.

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Aistė’s Story

Did you know that cardiomyopathy is an important cause of heart failure and the leading reason for needing a heart transplant? Watch now to hear Aistė’s story.

Aistė Štaraitė, from Lithuania, was diagnosed with life-changing, end-stage heart failure before her 30th birthday. Tests revealed that Aistė was living with undiagnosed dilated cardiomyopathy, the most common type of cardiomyopathy which causes the muscle of the heart chambers to become weakened and enlarged.

A heart failure and cardiomyopathy survivor, Aistė shares her story and her message to “Think Cardiomyopathy”.

#ThinkCardiomyopathy | #CardiomyopathyAwareness | #Cardiomyopathy2024 | #ThinkCM

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Think Cardiomyopathy! … and think fast!

Cardiomyopathy is often underdiagnosed, misdiagnosed, or diagnosed too late, and the consequences can be very serious. If untreated, cardiomyopathy can weaken the heart, leading to complications and to more serious conditions.

Cardiomyopathy is a predominant cause of sudden cardiac death in individuals under 35. It is an important cause of heart failure and the leading reason for needing a heart transplant.

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.

Think Cardiomyopathy!
Talk to your doctor.

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.

Types of Cardiomyopathy:

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).

Other less common types include:

• Cardiac amyloidosis – a form of restrictive cardiomyopathy caused by the build-up of amyloid protein deposits in the heart muscle.
• Restrictive cardiomyopathy (RCM) – an uncommon form of cardiomyopathy that is characterized by stiffening of the heart’s lower chambers (ventricles).
• Peripartum cardiomyopathy (PPCM) – a rare form of dilated cardiomyopathy that occurs towards the end of pregnancy or in the months following delivery.

About this campaign

Led by the GHH’s Cardiomyopathy Patient Council which now spans 24 patient organisations across 15 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.

The Cardiomyopathy Patient Council was formed in November 2021 and brings together patient organisations across the world to increase awareness and understanding of cardiomyopathy. The Patient Council advocates for improved diagnosis of the condition, access to appropriate testing, counselling and treatments. In addition, the Council aims to raise awareness and improve understanding of the disease, with a view to enabling people to live well with the condition.

The Patient Council’s mission is to identify and bring together cardiomyopathy-focussed and patient- led organisations across the world, creating a global alliance and common patient voice that raises awareness and improves diagnosis, management and understanding of cardiomyopathy for patients, caregivers and healthcare providers to ensure the best possible outcomes for those living with the disease.