Cardiomyopathy and education

Although every young person’s experiences of cardiomyopathy will be unique to them, there are some typical symptoms of the condition, or side effects of treatment, that they may experience. This guide can act as a discussion point with a young person, to identify what help and support they might need to manage their condition at school, college or  university.

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Symptoms

Symptoms can vary from one person to another and include the following. 

Fatigue (tiredness) 

Fatigue, or extreme tiredness happens as the heart’s function is reduced and less energy is delivered
to the body. People might need to take regular breaks or avoid some activities.

Breathlessness

When the heart can’t pump effectively, fluid builds-up in the lungs, making it hard to breathe. This can affect physical activity but can also happen even when not active (at rest). People may need to take regular breaks, have additional time to do activities or avoid some activities.

Palpitations

Palpitations (being aware of your heart beating too fast, too hard or ‘fluttering’) are caused by arrhythmias (abnormal heart rhythms). Palpitations can be uncomfortable or distressing, and someone may need time to rest.

Chest pain

Chest pain can be caused by reduced blood flow and oxygen levels getting to the heart. It can
happen when active or when resting. Chest pain can be uncomfortable or distressing, and someone may need time to rest.

Dizziness or fainting

Reduced oxygen levels can cause light-headedness, dizziness and fainting. Having time to recover is
important until the feeling goes. Swollen ankles and tummy As the heart struggles to pump, fluid
builds up in the body, causing swelling. This is managed with medication.

Treatment

Treatment varies depending on the symptoms someone has. It can include any of the following.

Medication

Medication is used to:

  • reduce fluid build-up on the lungs or around the ankles;
  • reduce the workload on the heart and the volume of the blood, so it is easier for the heart to work;
  • reduce the rate and force of the heart’s contraction;
  • control abnormal heart rhythms and maintain a normal rhythm; and
  • reduce the risk of blood clots(which could lead to a stroke).

Medications can have side effects, depending on the medication and the individual. Side effects can
include tiredness, dizziness, low blood pressure, a cough, and needing the toilet more frequently

Implantable devices

Implantable devices can monitor the heart rate and treat abnormal rhythms, or take over control of the heart rate to keep a regular rhythm. They include pacemakers and ICDs (implantable cardioverter defibrillator). They are used for people who have, or are at risk of, life-threatening arrhythmias. Having a device can be worrying and feel over-whelming, and it can be difficult to come to terms with needing, or having, a device.

Surgery

In some cases, surgery might be used to reduce any obstructions that affect the heart’s effectiveness
at pumping, or to support the heart. A small number of people may need a heart transplant, where a failing heart is replaced with the heart from a donor.

The emotional and psychological impact

Although cardiomyopathy is a physical condition, it can affect all areas of a young person’s life, including how they feel physically, how they manage practically, and how they feel emotionally and deal with the impact it has on their life. This guide can help to identify what help and support a young person might need to manage the emotional impact of their condition at school or college.

Anxiety

Anxiety can be related to many aspects of living with a life-altering condition. Concerns may focus on
being a young person with a heart condition (often considered an ‘older persons’ condition), treatment, worry about dying or relatives having the condition, and not understanding the
condition and its impact.

Isolation

Cardiomyopathy can be an isolating condition as it is little known about. So it can feel like they are the only one with the condition, and that they are ‘different’. It can be difficult to find someone who understands. Peers may make judgements about what having the condition means.

Fear

Being diagnosed with a medical condition can be very frightening and worrying, particularly if the
condition is not widely known about. It can affect all areas of life, so young people may have fears about the future, including career choices and lifestyle.

Identity

Adjusting to having a condition can be hard. Balancing their own needs and limitations while carrying on a ‘normal’ lifestyle can be challenging, particularly when trying to avoid being defined by their condition. Over-protection by families can also be an issue.

Anger

Anger is a natural reaction to a diagnosis. It is not unusual to ask ‘why me?’, particularly when their
condition limits activities or feeling included by peers. Some young people react by pushing boundaries, which may result in risky behaviour while trying to find a coping mechanism.

External misconceptions

There are many misconceptions about what someone with a heart condition ‘looks like’, and how it affects them. People may not ‘look ill’ but can be limited by their condition and its management. But this varies from person to person, and from day to day.

Psycho-social

The psychological and social impact of the condition can be far-reaching. People may worry about what activities they can do, how it might affect relationships and intimacy, and how to ‘fit in’ with their peers. Knowing who and how to tell people about their condition can be worrying.

Transition services

Around the age of 17 years, young people move from children’s medical services to adult services (a process known as ‘transition’). This is a time when young people will start to take ownership of, and responsibility for, managing their own condition, and parents become less involved. This can be a difficult time, and not all young people will welcome this change.

Read more

Understanding cardiomyopathy

Understanding the condition can help identify appropriate support.

Read more here

Supporting young people in education

How to support young people and useful organisations.

Read more here

How we can help

We have support services for children, young people and younger adults.

Read more about our services for young people.

© Cardiomyopathy UK. March 2018.