Crystal clear - Living with Cystinosis

This episode will show you what opportunities social welfare law offers people with Cystinosis in Germany and how you can actively use them to your advantage. You’ll learn how to better understand your entitlements, why applications are crucial, and how to access the right support for your personal situation, step by step.

Our guest is Jana, a social law expert, lecturer, and someone who lives with Cystinosis herself. She combines professional knowledge with personal experience and highlights the challenges of daily life, as well as the opportunities available to those affected and their families.

The episode provides greater confidence in...

Muscles, bones, and physical activity play a crucial role in Cystinosis. You’ll get a clear overview of how the disease affects the musculoskeletal system and why regular exercise is an important part of treatment. The session will cover both physical changes that occur during childhood and adulthood, as well as specific ways to support patients.

Our guests are Prof. Dr. Susanne Bechtold, an expert in pediatric endocrinology and bone health at LMU Medical Center in Munich; Dr. Elke Wühl, a pediatric nephrologist at Heidelberg University Hospital; and Dr. Nadine Herzig, a pediatric orthopedist at Schön Klinik Munich. Together, they bring...

If you have Cystinosis and are thinking about starting a family, many medical and personal questions arise. This episode provides a comprehensive overview of the conditions, opportunities, and risks involved in trying to conceive, as well as how individual factors such as kidney function, comorbidities, or current treatments affect family planning. It explores the perspectives of both women and men.

The guests are PD Dr. Mira Choi, a nephrologist at the Lichtenberg Kidney Center with many years of experience at Charité Berlin and an expert on women with kidney disease, and PD Dr. Julia Rohayem, a pediatric endocrinologist and specialist...

The eyes are frequently affected in people with Cystinosis. In this episode, you’ll get a clear overview of how the disease affects the eyes, what symptoms may occur, and why consistent treatment is so important.

You’ll learn how crystal deposits develop in the cornea, what symptoms they can cause, and how modern therapies help maintain long-term eye health. The discussion covers both medical background and very practical questions: When should eye drops be started, how can they be used effectively in daily life, and what helps when dealing with children?

Our guests are Rachel Bishop, an ophthalmologist with many years...