There may be a time when you start to think about starting a relationship and having children. You may want to talk to your Barth syndrome team or parents about how you talk about what Barth syndrome is to your partner and how it affects you. We can help you think about what to say and things to think about.  

When it comes to thinking about starting a family it can be helpful to talk to your Barth team.  An appointment for a face to face or telephone consultation can be made with the genetic counsellor who will discuss your options and answer your questions.  

Barth Syndrome is a genetic condition. You may have heard this before but be unsure of what it means.  When a condition is genetic it means that that you have inherited it from your parents. Everyone's body is made up of millions of cells. Inside these cells are tiny things called genes. The genes tell cells what to do. Genes are passed down from parents to children and some can cause Barth Syndrome. The active gene only gets passed to boys but girls can carry the gene without knowing, they are called carriers. This means that a carrier woman may have a boy with Barth Syndrome. A man who has Barth Syndrome himself and who has children of his own will always have either healthy boys without Barth Syndrome or carrier girls. 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.