IgAN Journey

Are you ready to embark on a journey of healing and self-discovery? Our "IgAN Mindful Moments" series explores the transformative power of mindfulness for individuals living with IgA Nephropathy.

Dive into a transformative experience with our body scan meditation. We'll take you on a journey through your own body, helping you connect with your physical sensations and gain insight into managing symptoms related to IgA Nephropathy. Discover the power of mindfulness and the profound connection between your mind and body.

Are you ready to embark on a journey of healing and self-discovery? Our "IgAN Mindful Moments" series explores the transformative power of mindfulness for individuals living with IgA Nephropathy.

Cultivate a sense of gratitude in your journey with IgA Nephropathy. In this episode, we'll explore the healing potential of gratitude through guided meditation. You'll learn how to harness the positive energy of thankfulness to boost your resilience and find hope in the face of challenges.

Are you ready to embark on a journey of healing and self-discovery? Our "IgAN Mindful Moments" series explores the transformative power of mindfulness for individuals living with IgA Nephropathy.

Visualization is a powerful tool for achieving your health goals. In this episode, we invite you to imagine your body's innate ability to heal. Through a series of guided visualizations, you'll envision a path to recovery and tap into the mind-body connection that can positively impact your experience with IgA Nephropathy.

Meditation has been around for thousands of years, and it turns out it's pretty good medicine for many people.

Not only can meditation help us reset and tune into oiursevles by being more mindful and present, research also shows it carries a host of health benefits. For exampe, helping to ease anxiety, depression and chronic pain; lower blood pressure; and improve memory, sleep and concentration, among other positivies. And for people living with IgA Nephropathy and other life-changing chronic conditions, meditation can help you feel calmer and more grouonded in managing your disease.

In this epiosde, we are joined by Fraqnck Raharinosy, an expert in souind meditation who shares howo meditation techniques can help, and how to integrate them into your daily life. He has also worked with us to produce a guided sound meditation for our IgAN community to take advantaage of as part of our IgAN Mindful Moments with more tools to come.

Franck has been providing guided sound meditations since 2016 and hihs compassionate and warm energy shine through.

In this episode, we talk about:

• The benefits of meditating and various approaches, including how sound medittion works
• Actionable tips for incorporating meditation and promote mindfuness in your life, which can help boosst coping and self-awareness
• How to prepare for your practice so that you are able to reach a blissfu state and be fully present

And remember, mediation doesn't take a lot of time. When you have a few minutes of alone time, you can sit down comfortably, take deep breaths in through your nose and out through your mouth focusing on your breathing and restoring energy. Meditation and activities that help center you can do wonders for your mental and emotional health. So try it out.

Access our mental health resources

Connect with Franck Raharinosy:

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Connect with Franck Raharinosy:

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IgA Nephropathy Foundation

The kidneys are responsible for excreting and getting rid of a lot of the waste products that come through the body, and a lot of these waste products come from the food we eat. So it's important that we consume foods that are friendly to our kidneys and easy for the body to digest and breakdown, especially for those with diseases like IgAN.

To give us very practical tips to eating better for our kidneys. Schusterman joined us to talk about all things nutrition.

Dr. Shusterman is a Nephrologist practicing in Greenville, SC at Carolina Nephrology. He is also known as "The Cooking Doc" from his YouTube show. Here, he helps his patients find creative ways to use new ingredients to cook dishes that taste amazing. He also wrote his own cookbook, The Cooking Doc's® Kidney-Healthy Cooking: A Modern 10-Step Guide To Preventing & Managing Kidney Disease.

Dr. Schusterman shared several tips including:

● Limit sugary drinks

● Eat more plant-based foods

● Eat less fast food

● Have a low-sodium diet

Links:

The IgAN Cookbook

Connect with Dr. Blake Shusterman:

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When someone gets a life-altering diagnosis such as IgAN, it not only affects the person living with it, but also the people around them. For parents, it's a different and unique experience. They provide support as they watch their child learn to cope and live with the impact of this disease. It can be a lonely and worrying experience navigating what are often unchartered waters, but it doesn't have to be. Today, we have with us Julie and Jeanette, two amazing moms of children who are at different stages of their IgAN journey. Their budding friendship speaks to the little blessings that can come from life's challenges. Even though they live states away from one another, they met at an event to raise awareness about the impact of IgAN, with both of their now adult children sharing their experiences. That chance meeting led to the start of a life-long friendship rooted in shared experiences, love for their children, music, and a mutual love for Babyface. "I found that on this journey, it's so very important to say it out loud, say that you're scared, anxious, that you don't know the questions to ask, say that I'm shaking and I don't know where to go from here." -Jeanette Julie and Jeanette talk about how their friendship has helped one other. They share the importance of making connections, being vulnerable and creating bonds that can help you through these uncertain times.

For example, the connections: ● Between parents who are going through the same struggles. They say you can feel what is in each other's hearts without necessarily having to say the actual words. ● Between people living with IgAN. Their kids are now close friends. They are both working as IgAN Ambassadors to support other patients, especially those who are newly diagnosed and are at a loss on what to do. They want to encourage others by sharing their experiences. ● Outside the disease. When there is a disease such as IgAN, it can be all-consuming. A big part of your life revolves around the disease, so it's even more important to bond outside of it. They recommend spending time as parent and child or as friends just having fun and doing other things you both enjoy. And when asked about their wish for Mother's Day, both Julie and Jeanette don't want anything special, and only expressed their gratitude for the little things, and for their kids. This Mother's Day is also special since it falls on the same day as the 2 nd Annual IgA Nephropathy Awareness Day. May 14 marks the date when Bonnie and Ed Schneider formally launched the IgA

Nephropathy Foundation a journey that began after their son was diagnosed and there was nowhere to turn. It's not always an easy road for parents of children with a diagnosis, but it is amazing when they are able to find each other, support one another, and form a bond that would last a lifetime, like how Julie and Jeanette have.

https://igan.org/

Guest Dr. Jonathan Barratt talks with us about two new treatments for IgA Nephropathy (IgAN) –the first specifically designed and approved for the management of IgAN.

TARPEYO® (budesonide, delayed release capsules) was approved by the U.S. Food and Drug Administration (FDA) in December 2021 and FILSPARI™ (sparsentan) gained approval earlier this year. Both are prescription medicines used to lower levels of protein in the urine (proteinuria) in adults with IgAN who are at risk of their disease progressing quickly.

Dr. Barratt, who is a nephrologist at the University of Leicester in the UK, says their approvals mark a pivotal turning point for many people with IgAN and their caregivers. As principal investigator for many international randomized controlled clinical trials in IgAN, he has seen major advancements in treatments for IgAN, with many more clinical trials underway to study additional therapies and deepen our understanding of the root cause of the disease.

He encourages patients to learn about their IgAN, and ask about new treatments, including the potential benefits and side effects, as well as available clinical trials.

In this episode, you will learn the following:

1. How two new FDA approved therapies work.

2. What lifestyle changes can help protect kidney function.

3. How to access new therapies and treatment options to maintain kidney health over the long-term.

Learn more about IgAN through the IgA Nephropathy Foundation

IgA Nephropathy (IgAN) is an autoimmune disease that attacks the kidneys. Some people living with IgAN will need a kidney transplant. Finding a donor match, facing the anxiety about whether or not your body might reject the new kidney or of IgAN returning, and recovering after surgery aren't easy tasks.

To discuss some of the associated mental health challenges confronting people after receiving a kidney transplant, we are again joined by Dr. Daniel Cukor. Dr. Cukor is a clinical psychologist and Director of Behavioral Health at Rogosin Institute in New York City.

Anxiety, recovery, medications, adjusting to your new life post-transplant, and re-establishing yourself, are just some of the things people go through, though everyone is different. Dr. Cukor shares three tips:

● Be intentional in prioritizing your emotional health.

● Focus on "what is" instead of focusing on "what could have been".

● Be proactive in adopting strategies for taking your immunosuppressing medications.

He also shares the common experience of those who just went through a transplant of the tension between joy and sorrow, highs and lows, and gratitude and indebtedness.

Recovery from a transplant takes time, effort, and a lot of figuring things out. But in the end, it's worth it, it gives people hope, and it might just be what you need to live your life to the fullest.

"It [transplant] is a difficult journey, but ultimately one that is well worth it, both medically and psychologically."

Connect with Dr. Daniel Cukor:

Rogosin Institute Profile

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Learn more about IgAN through the IgA Nephropathy Foundation

IgA Nephropathy (IgAN) is an autoimmune disease that attacks the kidneys. It usually progresses slowly, but some people with IgAN eventually develop end-stage kidney disease, which means they will need dialysis or a kidney transplant.

Nearing dialysis or kidney transplantation can be an especially emotional time and can come with a series of stressors. There are often a lot of decisions to be made, but also a lot of "hurry up and wait" and these lulls of time can be hard. It's important to stay in tune with your thoughts, emotions and support systems.

We are grateful to welcome back our guest Dr. Daniel Cukor, clinical psychologist and director of Behavioral Health at the Rogosin Institute in New York City, to discuss some of the common struggles and coping mechanisms that often come into play at this stage of IgAN.

In this episode, we talk about what people can do when beginning dialysis or preparing for kidney transplantation. Here are three suggestions from Dr. Cukor:

● Adopt a positive mindset that helps you to focus on how you move forward from here and practice gratitude and appreciation (seeing the glass as half full versus half empty)

● Try to optimize your mental health, including getting professional help, so that you can better cope and navigate the illness. Don't run on empty or you'll feel overwhelmed. [AC1]

● People often have procedure anxiety. Get as much information as you can so that you have an accurate perception of what it will be like; talking to other people who are a few steps ahead of you can be helpful.

● Be proactive about your mental health, especially if you're feeling depressed or are having difficulty sleeping

Dr. Cukor also shares practical things you can do for self-care, such as scheduling physical activity into your day, leaning in to people living with IgAN who can share their experiences, spending time with friends or family, looking for ways to make the time spent in dialysis more meaningful, or talking with a mental health professional.

It's okay to ask for help at any point in the journey so you don't feel alone.

Connect with Dr. Daniel Cukor:

Rogosin Institute Profile

LinkedIn