Podcasts

IgAN Journey Trailer

Whether you or someone you love has been diagnosed with IgA Nephropathy, you are in the right place for information, support and encouragement. This podcast is brought to you by the IgA Nephropathy Foundation. Our mission is 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.

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Episode 1

Tuning into your mental wellness and coping – Part 1 of our three-part series on minding your mental health along the IgAN journey

Summary:

Finding out that you have IgA Nephropathy (IgAN) can be scary. Many people are flooded by a range of emotions, as well as the uncertainly of how the condition might progress. It can be a difficult and complex journey, and managing the emotional and social effects of IgAN can be just as challenging. 

Guest Dr. Daniel Cukor, a clinical psychologist and the Director of Behavioral Health at the Rogosin Institute in New York City, works with people with chronic kidney disease to help them navigate their journey, find ways to cope and stay positive. But what does successful coping look like for those who are newly diagnosed with IgAN or who are at earlier stages of the disease?

In this episode, Dr. Cukor will discuss the process many people go through to accept and adjust to their diagnosis, how IgAN might affect one’s mental health, why it’s important to tune into and understand your feelings about IgAN, and how to develop effective coping strategies.

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Episode 2

Mental health matters – Part 2 of our 3 part series on mental health and coping at different stages of IgAN

Summary:

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.

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Episode 3

Coping Post-Transplant — Part 3 of our 3 part series On Coping and Mental Health at Different Stages of IgAN

Summary:

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. 

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Episode 4

New Treatments and Research for IgAN – The Future is Bright

Summary:

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.

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Episode 5

The Importance of Connection: Celebrating Mother&#39;s Day and IgAN Awareness Day with Two Moms Ep 5

Summary:

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.

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