Sharing Stories, Raising Awareness: Our Exciting Podcast Partnership with BDNG We are delighted to have a partnership with the British Dermatological Nursing Group (BDNG) to amplify the voices of those living with ichthyosis. Through this powerful podcast series, we are creating a platform for real stories, real experiences, and real impact—helping dermatology nurses and healthcare professionals gain a deeper, more personal understanding of ichthyosis. Why This Matters! Ichthyosis is more than just a skin condition; it affects every aspect of life, from medical care and symptom management to school, work, social interactions, and emotional well-being. Many people, including healthcare professionals, may not fully understand the day-to-day challenges that individuals and families face. This podcast series is an opportunity to bridge that gap, fostering greater awareness, empathy, and better patient care. We are honoured to feature voices from across our diverse community, including:🔹 Individuals with ichthyosis – sharing their personal journeys and insights🔹 Parents and caregivers – discussing the realities of caring for someone with ichthyosis🔹 People of all ages, backgrounds, ethnicities, and severities of the condition – highlighting the wide-ranging impact and unique challenges different individuals face What This Will Achieve? By sharing these first hand experiences, we aim to: Enhance education and training for dermatology nurses, ensuring they have a deeper understanding of ichthyosis beyond medical textbooks. Increase awareness about the realities of living with ichthyosis, breaking down misconceptions and stigma. Improve care and support for individuals and families, leading to more compassionate and effective healthcare interactions. Empower our community by giving members a voice to tell their own stories, their way. Get Involved – Share Your Story! We want to hear from you! If you have any type or severity of ichthyosis, or if you are a parent or caregiver, your story matters. By taking part, you will not only be helping to educate and inspire dermatology professionals but also providing valuable support to others living with ichthyosis. Interested in recording a podcast? We’d love to hear from you! Get in touch with us today to be part of this exciting project and help make a difference. Contact us to share your story! Email us at [email protected] if you'd like to participate. Listen to our Podcasts! Lesley Lesley shares her and her child’s experiences with ichthyosis, a change in diagnosis from Ichthyosis vulgaris to a type of Palmoplantar Keratoderma (PPK), family genetics, school challenges, and the resources found through the Ichthyosis Support Group. Georgia Georgia opens up about her journey as a parent, sharing her experience of raising her daughter, Savannah, who has Autosomal Recessive Congenital Ichthyosis (ARCI), specifically TGM1 ichthyosis. David David Coker joins this podcast to talk about his life with Erthrokeratoderma Variabilis (EKV) and the importance of the Ichthyosis Support Group. Mandy and Gulzeab Mandy, one of ISG's co-founders, and ISG member Gulzeab, talked to the BDNG during the annual conference about the challenges patients and parent caregivers face living with ichthyosis. Manage Cookie Preferences