In this episode I chat to Daisy who has Cholesteatoma, a condition which mainly affects her hearing but has caused anxiety, low mood and years of being misdiagnosed. In this episode we discuss being a young person with rare disease and having to miss out on what a 'normal' young person can sometimes take for granted, how much rare disease can affect your mental health and the lack of support in this area when being diagnosed with a life-changing condition but also how Daisy's rare disease has given her the motivation to work in the rare disease sector and give other young people a platform to feel empowered and share their inspiring stories.