Rheumatic heart disease: causes, symptoms and care in the UK

Rheumatic heart disease is long-term heart damage caused by rheumatic fever. The NHS describes rheumatic fever as a very rare complication that can develop after a bacterial throat infection, mainly in children, causing painful joints and heart problems. It says that rheumatic fever happens after a bacterial throat or skin infection, that most people who have an infection will not get rheumatic fever, and that it is not caused by the bacteria themselves but by the immune system fighting off the infection and attacking healthy tissue instead.

In rheumatic heart disease the heart valves are the main target. The British Heart Foundation (BHF) lists having had rheumatic fever among the main causes of heart valve disease, alongside being born with an abnormal valve, cardiomyopathy, damage from a heart attack, getting older and infection of the heart.

The condition is therefore a late consequence, not an active infection. By the time valve damage causes symptoms, the rheumatic fever may have happened years earlier.

The NHS says symptoms of rheumatic fever usually appear 1 to 5 weeks after a bacterial throat infection and can include a high temperature; pain and swelling in the joints, usually ankles, knees, wrists or elbows; pain in the chest, breathlessness and a fast heart rate; jerky, uncontrollable movements of the hands, feet and face; tiny bumps under the skin; and pale-red patches on the arms and tummy.

Treatment for the acute illness includes antibiotics, painkillers, steroids if the pain is severe and medicines for severe jerky movements, with plenty of bed rest. The NHS says most people make a full recovery by about 3 months, but some take longer. It also says rheumatic fever can cause permanent heart damage which can take years to show up, so regular check-ups and further treatment may be needed when older.

The NHS lists symptoms of heart valve disease as shortness of breath, feeling tired or weak, feeling dizzy, heart palpitations, swollen ankles and feet, and chest pain or discomfort. Some people do not have any symptoms, and the condition is sometimes found by chance when a doctor hears an unusual sound (a heart murmur) listening to the chest.

BHF describes the same symptoms and adds that the symptoms can be mild, moderate or severe. It advises calling 999 if you have chest pain that does not go away when you rest, feel like you cannot breathe even when you rest, or faint and lose consciousness, and contacting a doctor for an urgent appointment if symptoms are getting worse, there are new symptoms, or there is a temperature with no obvious reason.

• Breathlessness, especially on exertion.

• Tiredness, weakness or dizziness.

• Palpitations.

• Swollen ankles and feet.

• Chest pain or discomfort.

• A heart murmur found on examination, sometimes with no symptoms.

The NHS says that if you have symptoms of heart valve disease a GP will listen to your heart and may arrange tests or refer you to a heart specialist (cardiologist). Tests include an ultrasound scan of the heart (echocardiogram), a chest X-ray and an electrocardiogram (ECG). BHF says the most common test is an echocardiogram, and that other tests may include blood tests, cardiac CT or MRI and angiogram.

BHF explains that doctors describe valve disease as mild, moderate or severe. For mild disease without symptoms, check-ups including an echocardiogram are usually suggested every 3 to 5 years, and for moderate or severe disease without symptoms every 6 to 12 months, with an appointment if new or worsening symptoms develop.

The NHS says if you have mild heart valve disease without symptoms you may not need treatment and will usually have regular check-ups. With symptoms or severe disease, you may need medicines to lower blood pressure and protect the heart (ACE inhibitors), reduce fluid build-up (diuretics), slow the heart rate (such as beta blockers) and reduce the risk of blood clots (anticoagulants). Severe heart valve disease usually needs surgery to repair the valve if it is not seriously damaged, or replace it with an artificial valve or one made from human or animal tissue.

The NHS also lists possible complications: heart failure, atrial fibrillation, stroke and endocarditis, a serious infection of the heart. It advises getting advice from a heart specialist if you are pregnant or want to become pregnant, because pregnancy can make symptoms worse, although you can usually have a safe pregnancy with extra monitoring.

The NHS says that if you have had rheumatic fever once, it is more likely to come back, so sore throats should be treated early, and you may have to take antibiotics for several years to help stop it returning. It is less likely to come back if it has been 5 years since the last episode, and the younger you are, the more likely it is to recur. It advises seeing a GP if you have had rheumatic fever before and get a sore throat or think it has come back, or if you have had a bacterial throat infection recently and get symptoms of rheumatic fever.

BHF says healthy lifestyle choices help to prevent valve disease getting worse: exercising in a safe way, maintaining a healthy weight, eating a healthy balanced diet, stopping smoking and reducing alcohol, and it lists questions to ask your doctor about exercise, flying, contraception, having children and antibiotics for dental treatment.

On the NHS, valve disease is managed by GPs and cardiologists, with echocardiography, valve clinics and cardiac surgery. BHF notes that hospitals usually have a specialist valve service with a nurse specialist as a contact.

Private cardiology can offer rapid echocardiography and review. Because the NHS and BHF both emphasise regular surveillance, it helps to ask how often scans are planned and who to contact if symptoms change.