Living with BBS
Receiving a diagnosis of Bardet-Biedl Syndrome is often an extremely emotional time, both for the person concerned and for members of their family.
One of the most powerful things we can share as a community are our personal stories, which can help us all to develop our understanding of what it means, for different people, to be affected by BBS.
This challenge affects people in many different and varied ways and these personal perspectives can be positive and inspirational, as well as helping those who are struggling to cope feel like they are not alone in their experience..
Thank you to everyone who has shared their story – they are hugely valuable and make a big difference to families and individuals affected by BBS, especially soon after diagnosis.