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 wit...

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 exper...

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 me...

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 back...

Drug therapy is the cornerstone of cystinosis treatment. In this episode, you’ll learn why cysteamine is currently the most important active ingredient, how it works in the body, and why consistent use throughout one’s entire life is crucial. Together with Dr. Katharina Hohenfellner, one of the leading experts on cystinosis and head of pediatric nephrology at RoMed Klinikum Rosenheim, we’ll explai...

A diagnosis of cystinosis often raises many questions and presents challenges for families—especially because the initial symptoms are nonspecific and do not immediately point to a rare disease. In this episode, you’ll learn what early signs may indicate cystinosis and how the diagnosis is confirmed. Symptoms such as failure to thrive, excessive thirst, or frequent urination are clearly explained...