Recently diagnosed
The first weeks bring more questions than answers. We help you understand what the diagnosis does and does not mean, and what to ask at your next appointment.
Where to start
1
Understand Brugada
Learn what the condition is and how it affects the heart's electrical system.
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2
Inherited condition
Why it runs in families, and why screening close relatives matters so much.
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3
Our work
Awareness sessions, community events and support for families.
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Get support
Speak with our team about support for you or someone in your family.
Read moreWho we are
Understanding Brugada Syndrome
The Brugada Syndrome Foundation CIC is dedicated to increasing awareness, supporting people affected by Brugada syndrome, and helping individuals and families access clear, useful information.
We work alongside medical services rather than in place of them, and everything we publish is written in plain language for people who have just been told something frightening and need to understand it.
- Raising awareness through education and community engagement
- Providing information and support for individuals and families
- Working with community organisations and healthcare professionals
Understand the condition
What is Brugada Syndrome?
Clear and accessible information can help individuals and families better understand Brugada syndrome, possible warning signs, diagnosis and management.
An electrical fault in a structurally normal heart
Brugada syndrome is an inherited heart rhythm condition. The heart is usually formed perfectly normally, scans come back clear, but the electrical signals that coordinate each beat can become unstable.
- Every heartbeat depends on charged particles, principally sodium, moving through microscopic channels in the heart's cells.
- In Brugada syndrome one or more of those channels does not work correctly.
- Around one in five cases is traced to a change in the SCN5A gene.
- It is inherited: a parent who carries it has a one in two chance of passing it to each child.
- Risk varies widely. Many people who carry the pattern never experience a dangerous rhythm.
Possible signs and symptoms
Most people with Brugada syndrome have no symptoms at all, and it is often found through family screening. Where symptoms do appear they are easily mistaken for something more ordinary, which is why they are so often missed.
- Fainting without clear cause. Blackouts or near-blackouts, particularly at rest, during sleep, or while unwell with a temperature.
- Seizure-like episodes. Convulsions caused by a brief interruption in blood flow to the brain, often investigated as epilepsy first.
- Abnormal breathing at night. Laboured, gasping or groaning breathing during sleep, usually noticed by a partner or parent.
- Palpitations. A racing or pounding heartbeat that begins at rest or wakes a person from sleep.
- Symptoms during a fever. Fever is among the strongest known triggers.
- A family history of sudden death. An unexplained death of a relative under 40 is a warning sign in its own right.
How Brugada syndrome is assessed
Diagnosis rests on a distinctive pattern seen on an electrocardiogram, together with a specialist assessment of symptoms and family history. The difficulty is that the pattern is not always present, it can come and go.
- Electrocardiogram. A short, painless recording of the heart's electrical activity. Electrodes are sometimes placed higher on the chest, which makes the pattern easier to see.
- Provocation testing. Where the pattern is not visible but suspicion remains, a medication may be given under close supervision in hospital to reveal it temporarily.
- Assessment during fever. Because a raised temperature can unmask the pattern, a recording taken during a feverish illness can be highly informative.
- Genetic testing. Where a causative gene change is found, relatives can be tested directly.
- Family assessment. Close relatives should be offered an electrocardiogram and referral to a specialist inherited cardiac conditions service.
Living with Brugada: management and specialist care
There is no cure at present, but the condition is managed very effectively. With accurate diagnosis and the right specialist care, the great majority of people who have it live long and entirely ordinary lives.
- Treat fever promptly. A temperature of 38°C (100.4°F) or above should be brought down quickly, and advice sought if it persists.
- Check every medicine. A number of common prescription and over-the-counter medicines are unsuitable. The list at brugadadrugs.org should be checked before starting anything new.
- Implantable defibrillators. An ICD is the only treatment proven to stop a dangerous rhythm, and is normally offered after a cardiac arrest or high-risk symptoms.
- Medication and procedures. Certain medicines can reduce dangerous rhythms in selected patients, and catheter ablation may be considered where a device fires repeatedly.
- Lifestyle. Heavy alcohol and stimulants are best avoided. Most people can continue to exercise, but activity should be discussed with a cardiologist.
- Screening relatives. Early identification of family members remains the single most effective protection available.
Who we help
Wherever you are in this, there is a place for you here
Families being screened
When one person is diagnosed, the whole family is affected. We explain how screening works and support relatives through the wait for results.
How screening worksBereaved families
A sudden death without explanation leaves grief and unanswered questions together. We help families understand what happened and what it may mean for those who remain.
Find supportOur work
What we do
We work alongside medical services rather than in place of them, supporting families who live with this diagnosis and improving public understanding of a condition that is still too often missed.
Awareness & education
Educational resources, awareness sessions and community activities to improve understanding.
Community awareness sessions
Talks in gurdwaras, community centres, schools and workplaces, so more people recognise the warning signs early.
Individuals & families
Information, guidance and compassionate support for people affected by Brugada syndrome.
Early recognition
Encouraging timely assessment, because early identification is the most effective protection.
Supporting research
Connecting patients with research and registries that improve how individual risk is assessed.
Representing patients
Ensuring people living with Brugada syndrome help shape the services that affect them.
Speak to someone who understands
Whether you have recently been diagnosed, are waiting to be screened, or have lost someone and are seeking answers, we would be glad to hear from you.
Support our work
Your gift keeps our important work going
Every donation funds awareness sessions, family support and the materials we give away free. We are a community interest company, so what you give goes straight back into the work.
In an emergency
If a person collapses and is not breathing normally, call your local emergency number immediately, begin CPR, and send someone for the nearest defibrillator.
