UNDERSTANDING INHERITED CARDIAC CONDITIONS
YOUR GUIDE WHILE YOU WAIT
Getting news that an Inherited Cardiac Condition (ICC), sometimes called an inherited heart condition, might be a concern, or experiencing worrying symptoms, can feel overwhelming. At Poppy's Light Foundation (PLF), we're here to help. This guide offers straightforward advice on what to consider and what to avoid as you await medical results and a diagnosis.
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Inherited Cardiac Conditions affect how your heart works or its electrical system. About 1 in 250 people worldwide have an ICC, affecting around 260,000 people in the UK [1]. If one parent carries a faulty gene, there's a 50:50 chance each child could inherit it. Sometimes, people carry these genes without any symptoms, but they can still pass them on, making early awareness and screening very important.
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It's crucial to look at your family's health history. If close family members (like parents, brothers, sisters, or children) have been diagnosed with an ICC or had a sudden, unexplained heart problem, your risk might be higher. Your doctor will often draw a "family tree" to check for these clues.
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Symptoms like dizziness, blackouts, fainting, fits, a racing heart, breathlessness, or chest pain are important signs that need medical attention. Sometimes, the first sign of an inherited heart condition can tragically be a sudden cardiac arrest. This is why early family screening is so important, even if no symptoms are present.
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Always talk to your GP (local doctor) or go to your local emergency department if you're worried about new or worsening symptoms. They are the best people to help with any heart concerns. Not sure what to do? Contact Poppy's Light Foundation; we can help guide you to the right medical support.
KEY QUESTIONS
TO ASK YOURSELF
& YOUR DOCTOR
Knowing these details can make a big difference for your medical team:
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Is there a family history of unexplained sudden death?
If someone in your family has died suddenly and unexpectedly, especially if they were young (under 40 or 50 years old) or seemed healthy, it's really important to share this with your doctor. This can be a sign of an inherited heart condition in the family, and knowing about it early can lead to vital screening and care for others. These conditions are genetic, meaning a faulty gene can be passed down through generations, even if the person carrying it has no symptoms.
Has your child ever fainted during exercise?
If a child or young person faints while exercising, it's a serious warning sign that needs immediate medical attention. While not all faints mean a heart problem, those that happen during physical activity definitely need checking out.
Important UK Guidance:
British medical guidelines, including those followed by NHS paediatric cardiology services, consider fainting during exercise a "red flag" symptom. This means it requires a thorough cardiac investigation to rule out serious underlying heart conditions.
A full assessment by a specialist usually involves:
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A 12-lead Electrocardiogram (ECG): A simple test that checks the electrical activity of the heart.
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An Exercise ECG (Treadmill Test): This checks the heart while it's working hard, which can show problems not seen at rest.
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A 24-72 Hour Ambulatory ECG (Holter Monitor): A small, portable device worn for a day or more to record the heart's activity over time, catching any irregular beats that might come and go.
Remember: A basic ECG on its own is often not enough to rule out an inherited heart condition in these cases. A comprehensive evaluation by a specialist is vital. If your child has fainted during exercise, your GP should refer them to a paediatric cardiologist.
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Have you lost a loved one suddenly and unexpectedly?
Could it be heart-related? Losing someone suddenly is incredibly tough. Sometimes, an undiagnosed inherited heart condition is the reason. This includes deaths linked to drowning or if the person was the driver in a fatal car accident – an underlying heart problem could have played a role.
If a heart-related death is suspected in an otherwise fit and healthy baby, child, or young person (usually up to their 40s), it's crucial to ask for a spleen sample during the post-mortem (autopsy). This small sample can be used for genetic testing (a "molecular autopsy"), which can help doctors screen other family members and offer them treatment if needed. It's important to know that consent from the family is needed for this.
Many inherited heart deaths can be prevented. Early diagnosis and proper care can truly save lives.
MEDICINES
TO BE CAREFUL WITH
It's very important to always talk to your doctor or pharmacist about all your medicines, including over-the-counter drugs and even supplements, if an inherited heart condition is suspected. Some medicines can increase the risk of irregular heart rhythms or worsen symptoms in certain ICCs.
Never stop, start, or change the dose of any medicine without medical advice.
For conditions like Long QT Syndrome, certain antiarrhythmics, antibiotics, antidepressants, antihistamines, and antipsychotics should be discussed with your doctor, as they can affect the heart's electrical signals. Your doctor may advise caution with certain antiarrhythmics, psychiatric medications, and even some anaesthetics. For Hypertrophic Cardiomyopathy (especially if it causes obstruction), drugs like nitrates, ACE inhibitors, and certain calcium channel blockers can sometimes worsen the condition. Your doctor will give you specific advice on which medicines to be careful with, depending on your suspected condition.
SIMPLE LIFESTYLE TIPS
WHILE YOU WAIT FOR ANSWERS
While you're waiting for a diagnosis or more medical advice, these simple steps can help manage symptoms:
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Worried about fainting?
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Get medical help: This is always the most important first step 💫
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Stay hydrated: Drink plenty of water throughout the day. Dehydration can make fainting more likely 💫
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Avoid caffeine: Drinks like coffee, tea, and energy drinks can sometimes make your heart race and might contribute to feeling lightheaded. It's best to avoid them if you're experiencing fainting spells 💫
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Limit alcohol: Alcohol can affect your heart rhythm, lower your blood pressure, and dehydrate you, potentially increasing your risk of fainting. It's best to avoid it if you're experiencing faints until a doctor has given you clear advice 💫
DONT BE AFRAID
TO SEEK HELP!
Treatments for inherited heart conditions can be straightforward and very effective. Simple medications like beta-blockers can greatly improve your quality of life and reduce risks, especially for conditions like Long QT Syndrome and Catecholaminergic Polymorphic Ventricular Tachycardia.
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So, please don't hesitate to talk to your GP and ask for a referral to a heart specialist (cardiologist). Specialist clinics are experts in these conditions and can provide tailored care.
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Support from Poppy's Light Foundation
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Worried about changing your lifestyle after an inherited heart condition diagnosis? Poppy's Light Foundation offers tailored support for you and your family. Our team includes highly trained professionals like clinical psychologists, registered mental health nurses, specialist public health nurses, and family counsellors 💫
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We're here to help you navigate the emotional and practical sides of living with an ICC.
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Bereavement Support
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PLF also provides a special bereavement package for children and families after a sudden cardiac death. This vital service is available to all families, regardless of your financial situation 💫
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We are committed to offering compassionate and comprehensive support during the toughest times, specifically aiming to help siblings, as losing a brother or sister in childhood can be as tough as losing a child.