Colleges, universities and employers have a legal obligation to make 'reasonable adjustments' to help you to access education and work. It is illegal for colleges, universities or workplaces to discriminate against you on the grounds of any health conditions or additional needs you may have.  

Talking about your condition with friends at school or college or work may be something you have already done or may be something that feels daunting. You might wonder if you need to share with others about your condition.  It can be helpful to share about Barth Syndrome with colleagues, teachers or employers so that they can help you if you need it.  You may also need their help, for instance if you developed a problem with your heart rhythm and they needed to seek medical help.  

You can talk to your Barth specialist Social Worker about any questions you have about education and employment and benefits that may be of help. This may vary depending on where in the UK you live. They will also be able to signpost you to where you can find further advice and information.   

There is also information available  here  about your rights in education and information here and here as an employee which you may find helpful. Although aimed at parents/carers and teachers the resource Useful Resources may provide some ideas to help manage any challenges in school or college and has been developed by Barth Syndrome UK.