You might be thinking about your future and what this looks like in regards to further study or work. It can be important as part of this to think about talking to friends and colleagues in these places alongside appropriate people in further education/apprenticeships schemes or potential employers. It can be helpful to know your rights in the workplace too.

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 good to talk to friends, colleagues, teachers or employers so that they can help you if you need it. They are almost certain to be more understanding about things such as your energy levels or tasks that you may find more difficult if they know about your condition. You may also need their help, for instance if you developed a problem with your heart rhythm. 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 work places to discriminate against you on the grounds of any health conditions or additional needs you may have. 

You can talk to your team 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 advise on careers or signpost to more 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  here may provide some ideas to help manage any challenges in school or college and has been developed by Barth Syndrome UK. 

It's easy to feel that you are the odd one out and that everyone else is well, but in fact most people will have been to see their doctor in the past or be seeing their doctor regularly because of a medical condition you might not know about.