IgAN Journey

igan.org

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/

  1. 11/14/2024

    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

    27 min

  2. 11/14/2024

    Leaning In: A Journey of Love, Resilience and Care

    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

    41 min

  3. 10/10/2024

    Tips for Dealing with the Emotional Side of Living with IgAN

    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

    30 min

  4. 07/27/2024

    Ep17 Family Planning and Pregnancy with IgAN

    Compared with other kidney diseases, IgA Nephropathy tends to strike at younger ages, often coinciding with starting a career and/or having a family. While pregnancy is possible for women with IgAN, it's not without its challenges. Planning for a family with IgAN requires early planning and close monitoring to achieve the best possible outcome for both mom and baby and to determine if the risks of carrying a baby might be too high. In this episode, Whitney Simmons, who lives with IgAN, is a nurse practitioner, and serves on IgA Nephropathy Foundation's Medical and Scientific Advisory Board, talks with us about family planning with IgAN.  A dedicated advocate for people with IgAN and mother of two, she has personally navigated the many questions and decisions that come with pregnancy with IgAN. Whitney shares her  journey – from the early days of pregnancy planning and pulling together a high-risk pregnancy team to post-pregnancy recovery. She offers invaluable advice for women with IgAN who are thinking about starting a family and reminds us that every woman -- and every pregnancy -- is different and that there are other ways to build a family too.  She speaks to the importance of:  Sharing your goals and wishes for a future family with your nephrologist as part of your overall care.  Early planning and specialized medical care. This includes reviewing and adjusting medications before pregnancy to protect the baby, as well as managing risks around giving birth. A high-risk pregnancy OB/GYN should be part of your team. Recognizing the mental and emotional challenges of pregnancy and family planning and embracing the critical role of building a support system you can rely on. If you are worried about how IgAN might affect planning for a family of your own, you are not alone. Our community and resources are here to support you every step of the way. Stay connected with us and reach out for help or to share your own story. Together, we can make living with IgA Nephropathy and achieving big dreams a little bit easier. Resources:  IgA Nephropathy Foundation

    36 min

  5. 06/05/2024

    Ep16 Managing High Blood Pressure and Emerging Therapies EP16

    For many people, uncontrolled or unexplained high blood pressure may be the first sign of IgA Nephropathy (IgAN). That's because when the filtering capabilities of the kidneys are damaged, as is the case with IgAN, blood pressure can rise. In turn, elevated blood pressure can further damage the kidneys. The two are interconected. In fact, about 9 out of 10 people with chronic kidney disease have high blood pressure.  In this episode, we are joined by expert, Dr. Jan Basile, to discuss how blood pressure management is a necessary and important part of treating IgAN. Dr. Basile explains the kidneys' pivotal role in regulating blood pressure and electrolyte balance, best strategies for measuring and lowering blood pressure, as well as the promise of newer therapies to help manage IgAN.  Key topics discussed:  ●        The connection between blood pressure and the kidneys Kidney function influences blood pressure regulation and vice versa. Chronic kidney disease can lead to hypertension, while high blood pressure can accelerate kidney damage. ●        Importance of taking blood pressure at home New evidence suggests that outcomes are better for patients who routinely take their blood pressure at home, rather than just at the clinic. Dr. Basile gives tips for how to get an accurate measure. ●        Lifestyle modifications to lower blood pressure and also mitigate kidney damage For example, getting to and staying at a healthy weight, dietary changes, limiting sodium, increasing potassium intake, regular exercise, limiting alcohol, and quitting smoking. ●        Effectively managing IgAN takes a village Patients must insist on coordinated care that involves nephrologists, primary care clinicians, and other specialists working together and being responsive to individual patient needs.  By paying attention to and recording blood pressure numbers overtime, taking blood pressure-lowering medications as prescribed, and making healthy lifestyle changes, patients can feel more in control of their blood pressure, which can help the kidneys too.  Important Links: Target: BP™ IgAN Website

    27 min

  6. 04/23/2024

    "One Day at a Time" - Advice from State Senator Kelly Hancock

    IgAN Journey is dedicated to those affected by IgA Nephropathy (IgAN) and, in this episode, we have the pleasure of hearing from Texas Senator Kelly Hancock whose positive outlook has helped him live his best life despite his diagnosis with IgAN over 30 years ago.  His diagnosis came at a time when much less was known about the disease, and there was so much uncertainty. Senator Hancock and his family kept his diagnosis private for many years, but after publicly sharing his story and talking about the importance of having access to resources and support early on, he found the IgA Nephropathy Foundation. Senator Hancock talks about his IgAN journey and recent transplant and shares his advice for others affected by the disease: staying positive, learning from it, and keeping up with the things that bring you joy. He also talks about his efforts to educate others about organ donation and support legislation to protect living donors. About 1 in 3 people with IgAN will eventually need dialysis or a kidney transplant at some point – organ donation can be lifesaving The Senator also shares what it was like to: Receive a live-saving kidney transplant from his son-in-law Changes since his transplant  Healthy habits he's maintained throughout his life "Do what you can do for as long as you can do it." – Senator Kelly Hancock Senator Hancock is proof that people with IgAN can live a full life. Yes, it's uncertain, unpredictable, and difficult, but with the support of family and the right approach to life, it's possible. The IgA Nephropathy Foundation Connect with Senator Kelly Hancock: Website Facebook Twitter Relevant Links: Article: TX Sen. Kelly Hancock Recovers After Receiving a Kidney from His Son-in-Law by NBCDFW Article: My son-in-law's gift may have saved my life by Dallas News

    24 min

  7. 11/20/2023

    Caregiving – Taking Care of You and Being Resilient

    In this episode, and in honor of Caregiver Awareness Month, Bonnie Schneider, co-founder of the IgA Nephropathy Foundation talks openly about her journey as a caregiver to her son, Eddie, and growing the Foundation. She offers practical advice and tips for how to navigate this journey as a caregiver or care partner to someone with IgAN, including letting go of guild and taking time to recharge, reflect and for self-care.  One out of 5 American adults is a caregiver to someone with a chronic illness. It can take a major toll if you don't pay attention, which is why it's so important to connect with others and know that you are not alone. Remember, you need to take care of yourself to be able to take care of others, and it's not selfish to do so.   Take a listen to our conversation.   Connect with Bonnie Schneider: Website LinkedIn

    18 min

  8. 11/12/2023

    IgAN Mindful Moments Introduction to Meditation

    Are you ready to embark on a journey of healing and self-discovery? Welcome to "IgAN Mindful Moments," the podcast that explores the transformative power of mindfulness for individuals living with IgA Nephropathy. One big misconception many people have is that meditation is about clearing or emptying your mind. Thats not possible. Nor it is our goal. Howver, there is a big difference between "thinking" and 'stressing". Stressing is when you let the mind run amok, where it stops being productive. Its more often than not.... drama. That worrying aspect of the brain comes from problem solving, but at some point it stops being productive. And so meditation is giving yourself a break. Its self care. Its you making space for yourself in your day. And we are going to give you some tools that have been shown through many traditions and cultures, to be helpful. Generally speaking, while the art of meditation may not be easy, it is simple. The practice will vary day to day, moment by moment, and your job is to simply allow whatever it is that comes up in your mind to come up, without having to control it or change it or make it different somehow. . Allow yourself to simply observe, just watch, without judgement. Theres no good no bad, no right no wrong. For once, you can just breath.

    5 min
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About

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/

Information

  • Creator
    igan.org
  • Years Active
    2023 - 2024
  • Episodes
    22
  • Rating
    Clean
  • Copyright
    © 2023
  • Show Website
    IgAN Journey