BARTH SYNDROME AWARENESS

Have you heard of Barth syndrome?

Barth syndrome is a rare genetic condition that mainly affects boys and can have a significant impact on the heart, muscles, immune system, energy levels and growth.

How does it affect the heart?

One of the most serious features of Barth syndrome is cardiomyopathy – a disease of the heart muscle.

For many children, this can develop very early in life. In fact, up to 70% of those affected present with cardiomyopathy by their first birthday.

The heart muscle can become weaker and less able to pump blood effectively, which can lead to heart failure. Children and young people with Barth syndrome can also be at risk of abnormal heart rhythms (arrhythmias).

Alongside the cardiac impact, Barth syndrome can cause:

Muscle weakness

Extreme tiredness and poor exercise tolerance

Low white blood cell levels, increasing the risk of serious infections

Feeding and growth difficulties

Symptoms and severity can vary enormously from one person to another, which means this rare condition can sometimes be difficult to recognise.

Please share to help raise awareness of Barth syndrome.