Having Barth Syndrome may mean that you find it harder to cope with bacteria and viruses and so might miss more school or work but it does not mean that you cannot do many things that other young people do - you can still go to university, work and be in a relationship. You might want to get married or have children too. Having Barth Syndrome means that you might need to be a bit more careful and make sure that you look after your health but does not mean that you cannot have a full and fun life!

We spoke to other young people with Barth Syndrome who said 'Don't let it get in the way of your life', 'Live your life, don't climb a mountain everyday, but you can do it once if you want to'. One young person said 'It's never really stopped me'!

It can be helpful to think about choices you can make as you become more independent. Have a look at the tabs for more information and support on things that it can be helpful to think about such as work, travel and relationships.