There may be a time when you start to think about starting a relationship and having children.    

You may want to talk to someone you trust, such as family or friends about how you can explain your condition. The Barth team can also help you think about what to say and things to think about.     

Barth Syndrome is a genetic condition, which means it is passed down from parents to their children. Genes are tiny instructions inside our cells that tell our bodies how to work. The gene that causes Barth Syndrome is usually passed from mothers to their children and mainly affects boys. Girls can carry the gene without having Barth Syndrome themselves; they are called carriers. A woman who is a carrier may have a son with Barth Syndrome. A man with Barth Syndrome will have sons without the condition, and daughters who carry the gene.   

When it comes to thinking about starting a family it can be helpful to talk to your Barth team.  You can chat to a genetic counsellor if you want to talk about having children or find out more about how Barth Syndrome can be passed down in families.