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About HCM
Living with HCM
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Patient experiences
Resource Hub
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Home
About HCM
Living with HCM
HCM & Family
Patient experiences
Resource Hub
Login
Home
About HCM
Living with HCM
HCM & Family
Patient experiences
Resource Hub
Login
Home
About HCM
Living with HCM
HCM & Family
Patient experiences
Resource Hub
Login
Home
About HCM
Living with HCM
HCM & Family
Patient experiences
Resource Hub
Login
Home
About HCM
Living with HCM
HCM & Family
Patient experiences
Resource Hub
Login

Resource Hub

On this page, you will find educational documents, useful references, and trusted sources that can support you in learning more about the condition.

Q&A

Although oHCM can sometimes remain asymptomatic, common symptoms include shortness of breath, fatigue, chest pain, dizziness or fainting, and irregular heartbeat. Symptoms may vary from one person to another.
Only a cardiologist can determine whether these symptoms are indeed related to oHCM or another condition. Symptoms can often be similar to those of other diseases.

HCM can significantly affect quality of life, with symptoms such as shortness of breath, fatigue and chest pain that can limit activities of daily living and adversely affect emotional well-being. In addition, the need for regular medical treatment and close monitoring of heart health can trigger stress and anxiety on a daily basis. However, with proper disease management and support, it is possible to improve your quality of life[29].

Staying physically active is beneficial for your overall health and quality of life, even with HCM. For most people, regular low- to moderate-intensity activities such as walking or cycling are recommended, as long as they are well tolerated. However, there is no one-size-fits-all approach. The type and intensity of exercise should be adapted to your individual condition and regularly reviewed with your care team, who will assess your symptoms, heart function and overall risk profile. In some selected cases, higher-intensity or competitive sports may be considered after specialist evaluation. If you wish to be more active, this should always be discussed with your cardiologist.[30]

 

If a person carries such a variant, there is a 50/50 chance of passing it on to their children. Once one person is diagnosed, it is important to talk about family screening and share information about the condition. It is therefore recommended that close relatives (parents, siblings and children) should also be examined by a cardiologist. In some cases, genetic testing can help to figure out what variant, if any, is responsible for HCM in a family.[31]

Additional resources

Access a selection of helpful materials on HCM. These resources can help you understand the disease, guide discussions with families, and provide new insights into living with HCM.

Downloadable resources

External links

[29] Improvement in KCCQ-23 Clinical Summary Score at 30 weeks, as reported by patients with NYHA Class II–III oHCM (EXPLORER-HCM).

[30] Zorzi A, Pelliccia A, Corrado D. Inherited cardiomyopathies and sports participation. Neth Heart J. 2018 Mar;26(3):154-165. doi: 10.1007/s12471-018-1079-3.

[31] HCM Family Screening and Genetic Testing: What You Need to Know. (s. d.). CardioSmart. https://www.cardiosmart.org/assets/fact-sheet/hcm-family-screening-and-genetic-testing-what-you-need-to-know

Patient experiences

Discover real stories from people living with HCM.

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