『Crystal clear - Living with Cystinosis』のカバーアート

Crystal clear - Living with Cystinosis

Crystal clear - Living with Cystinosis

著者： Podcastfabrik | Cystinose Stiftung Germany
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Crystal Clear – Living with Cystinosis offers easy-to-understand information and personal insights into life with cystinosis. Together with experts and people living with the condition, we discuss medical topics, treatment, and everyday life—from diagnosis and medications to the eyes, kidneys, muscles, and bones, all the way to family planning and social welfare law in Germany. In-depth knowledge and practical tips for everyday life. Our goal: to better understand cystinosis, gain guidance, and make daily life a little easier. A podcast by the Cystinosis Foundation Germany as part of the digital LITERACY training program.Cystinose Stiftung Germany 科学 衛生・健康的な生活 身体的病い・疾患
エピソード
  • Social law #6

    Social law #6
    2026/04/30
    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 dealing with applications, government agencies, and benefits. You’ll get an accessible introduction to key topics like care levels and assessment procedures, learn the significance of the severe disability ID card and its designations, and discover how disability accommodations work in practice at school, in training, and in the workplace. It also explains what financial relief is available through health insurance benefits, reduced copayments, or tax advantages, and what support looks like for education, employment, or potential reduced earning capacity. In addition, the episode highlights the importance of reliable counseling centers and shows where you can turn for guidance if you feel lost in the maze of social welfare law. A central theme runs throughout the entire episode: support is always tailored to the individual and must be actively sought out. At the same time, you don’t have to go through this alone; self-help groups and other people in similar situations can provide valuable support. AI Note: This conversation is based on an original German recording. For the English version, the conversation was transcribed, professionally translated, and re-recorded using AI voices. Despite careful review, some nuances may differ from the original.
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    18 分
  • Muscles, bones and growth #4

    Muscles, bones and growth #4
    2026/04/30
    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 their diverse perspectives from endocrinology, nephrology, and orthopedics to the table and explain the connections in an easy-to-understand way. This episode helps you understand what physical changes can occur with Cystinosis and how you can actively counteract them. You’ll learn how muscle weakness, growth disorders, or skeletal changes develop and what role exercise, nutrition, and medical therapy play in this process. At the same time, you’ll receive concrete guidance on how much exercise is beneficial, what to look out for in daily life, and what options are available to specifically support your physical development. Particular emphasis is placed on how physical activity can be practically integrated into daily life, regardless of age or current health status. Topics such as exercise during dialysis or after a transplant are also addressed and discussed. AI Note: This conversation is based on an original German recording. For the English version, the conversation was transcribed, professionally translated, and re-recorded using AI voices. Despite careful review, some nuances may differ from the original.
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    17 分
  • Parenthood and possibility #5

    Parenthood and possibility #5
    2026/04/30
    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 in male fertility at the Eastern Switzerland Children’s Hospital in St. Gallen. Together, they break down the complex medical issues in an understandable way and provide guidance for those affected and their families. This episode explains what matters medically when planning a family and how you can best prepare yourself. You’ll learn which tests are advisable before pregnancy, what role kidney function and potential transplant status play, and what specific considerations must be taken into account regarding medication—particularly with cysteamine and immunosuppressive therapies. Additionally, the episode explains how risks can be realistically assessed and managed with the support of specialized centers. Another focus is on the options available to men with Cystinosis: You’ll gain insights into when further diagnostic testing is advisable and what options are available for those hoping to start a family. Overall, this episode provides an overview of what structured, interdisciplinary care can look like, from initial planning through to implementation. AI Note: This conversation is based on an original German recording. For the English version, the conversation was transcribed, professionally translated, and re-recorded using AI voices. Despite careful review, some nuances may differ from the original.
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    22 分
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