BBSUK

My Life, My Future

Some young people say that living with Bardet-Biedl Syndrome (BBS) is like a rollercoaster, with lots of twists and turns; sometimes life feels busy and exciting but at other times it feels like BBS gets in the way and stops them living the life they would like.

The information provided in this section has been put together by Bardet-Biedl Syndrome UK (BBS UK), to help young people who have BBS achieve the best life possible. You may have heard the word ‘Transition’ being used by health professionals. It is often used as a way to describe growing up and managing changes at key points in our lives. This includes all sorts of things like changing schools, starting work, making new friends or managing emotions. It also includes planning and preparing for your eventual transfer to adult healthcare services. As you get older you will want to have more choice, make your own decisions and develop the confidence to speak up for yourself. My Life, My Future is a useful toolkit of information to help you on your way to being more independent and get you thinking about how you would like to live your life.

The ‘My Life, My Future’ booklet and this webpage have been funded by Genetic Disorders UK through their Jeans for Genes grants programme. Heartfelt thanks go to the young people of BBS UK for their invaluable ideas, suggestions and comments which can be found throughout the booklet and this section. Thanks also go to the young people of ASUK who devised the T-KASH concept around which this booklet was developed.