IgAN Journey

About IgAN Journey

Whether you or someone you love has been diagnosed with the kidney disease IgA Nephropathy you are in the right place for information, support and encouragement. This podcast is brought to you by the IgA Nephropathy Foundation. It's mission: to be a patient-centric organization focused on finding a cure for IgA Nephropathy. Using the power of the patient community we are focused on funding research, using patient advocacy to empower our patients, and building a network of support. You are not alone https://igan.org/

Publisher

igan.org

Category

health & fitness

Language

en

Explicit

No

First episode

29 Jan 2023

Latest episode

14 Nov 2024

Latest episodes

26 episodes in the feed.

1. 

   14 Nov 2024

   Ep20 Celebrating 20 Years of Passion and Commitment

   In this special episode, Bonnie Schneider, co-founder of the IgA Nephropathy Foundation, shares her journey and reflects on 20 years of service to families affected by this rare disease. When her son Eddie was diagnosed with IgA Nephropathy (IgAN) at age 13, Bonnie and her husband felt lost and isolated. This profound experience motivated them to create a foundation that would ensure no family felt alone in their battle against IgAN. Today, the Foundation has become a beacon of support, advocacy, and hope for patients around the world. Bonnie speaks to the Foundation’s mission to support and empower patients with information and to push for better and more targeted treatments and, ultimately, a cure. She highlights key milestones, including the launch of our annual SPARK meeting, reflecting on the emotional power of these gatherings: “Seeing the tears of joy, hugs, and the exchange of contact information… that’s really, really powerful.” Over the years and like any new endeavor, the Foundation has faced challenges, but perseverance and faith have been Bonnie’s guiding principles. She recalls moments of doubt and credits her unwavering commitment to the cause and the support of her team for pushing through. “I made a deal… you just leave me the breadcrumbs and make sure I’m heading in the right direction.” Her advice for anyone facing obstacles is simple: “Don’t give up, just keep persevering.” Bonnie’s vision for the future is global, as the foundation is working to expand its reach and make sure no patient, regardless of location, feels alone. As she proudly states, “We want to be that life-saving community.” Through new therapies, clinical trials, and a growing IgAN community, the Foundation continues to push for progress, always keeping the patient voice at the heart of their efforts. Support and Info Available Here (https://igan.org/)

2. 

   14 Nov 2024

   Leaning In: A Journey of Love, Resilience and Care EP19

   November is Caregiver Awareness Month and, in this episode, Yulanda Brown and Steve Mayo talk candidly about their IgAN journey and how staying centered on what brought them together has helped them grow closer despite their struggles. Yulanda’s diagnosis came as a shock for both. The uncertainty and lack of information about the disease left them grappling with fear and confusion. There is a very definite learning curve that comes with becoming a caregiver/care partner, Steve shares – it’s about leaning in, learning about the disease, asking for and accepting help, and realizing it’s OK not to have all the answers. Consistently showing up and being there through the ups and downs is what matters most. But to do so, you have to take care of yourself so you can be present for and stay in sync with your loved one. The two speak openly about the unexpected emotional and physical strain on both patient and care partner and how the dynamics of their relationship have shifted with the diagnosis. Steve emphasizes the importance of communication, patience, and understanding in his role as a care partner, while also acknowledging the personal struggle that often accompanies it. This episode is a must-listen for anyone affected by IgAN, especially caregivers and care partners. Yulanda and Steve offer wisdom to others facing IgAN, reinforcing the importance of staying connected, communicating openly and grounding themselves in love. Their story is a reminder that while the journey may be long and challenging, it is also filled with moments of deep connection, love and hope. Their commitment to each other and to the IgAN community offers inspiration and comfort to those facing similar struggles. Yulanda and Steve have been together for over 38 years and celebrated their 36th wedding anniversary on November 5, 2024. Together, they have four children and seven grandchildren. Both are retired, Yulanda from Civil Service and Steve from Law Enforcement. They enjoy spending quality time with family and friends capturing moments that last a lifetime. Both Yulanda and Steve talk about how the IgA Nephropathy Foundation has supported them in their journey, helping them connect with others going through similar experiences – offering empathy, understanding and a sense of belonging. IgAN Support and Information (https://igan.org/)

3. 

   10 Oct 2024

   Tips for Dealing with the Emotional Side of Living with IgAN EP 18

   Living with IgA Nephropathy (IgAN) means not only managing the disease itself, as well as the related fatigue and other related health concerns, but also coping with the mental and emotional challenges come with having a chronic health concern. Patients may experience feelings of loss, depression, fear, denial, anger, or frustration over changes to their health and uncertainly of what the road ahead might look like. Loved ones often feel overwhelmed too faced with new responsibilities and concern. In this episode, we speak with David Walter, D.O, psychiatrist and ambassador for the IgAN Foundation. Dr. Walter specializes in helping patients manage chronic illnesses like Crohn's, colitis, and more. He also plays an active role in raising awareness for IgAN to help advance the Foundation’s mission and reach patients earlier in their journey. David delves into the essential connection between mental and physical health for individuals with chronic illnesses. As someone who lives with chronic conditions himself, he provides a relatable and practical perspective on mindfulness, emotional awareness, and the importance of prioritizing mental well-being amidst daily challenges. He explains the concept of medical PTSD and how past medical experiences can continue to impact mental health. Through this lens, David shares practical tips for positive coping and incorporating mindfulness into daily life, emphasizing the importance of starting small and building consistency. Drawing from his personal journey, he also offers advice on managing stress, setting boundaries, and avoiding comparison—especially in today’s social media-driven world. His insights are equally valuable for patients and their families, underscoring the importance of open communication, self-compassion and seeking support. Key Takeaways from the Episode: ●        Mindfulness: Simple practices like deep breathing and mindful walking can help ease anxiety and improve emotional regulation by keeping individuals grounded in the present moment. ●        Acceptance: Embracing one’s emotions and circumstances without judgment is crucial for maintaining mental well-being, particularly for those with chronic illness. ●        Communication and support: Open communication with loved ones and seeking professional help can strengthen relationships and provide emotional relief for both patients and caregivers. David’s experience serves as an important reminder that mental health is just as vital as physical health. IgAN Support

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

Apple Podcasts (US)

5.0 / 5

9 ratings

Spotify

5.0 / 5

2 ratings

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Guest appearances

Books guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.