Episoder
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When you hear the term palliative care, what comes to mind? I’ll admit I used to think it meant something very different. But today’s guest, Dr. Shannon Herndon, helped reshape my understanding. Dr. Herndon joins us to talk about how palliative care can support scleroderma warriors not just at the end of life, but throughout the journey of living with this disease.You may remember a recent survey circulating in our community Dr. Herndon was behind it. The goal? To better understand how palliative care can be woven into the fabric of scleroderma care. We had a thoughtful conversation, and I’m excited to share it with you.
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Today’s guest is Carolyn Haeler, the founder of a delicious gluten-free cookie brand, called MIGHTYLICIOUS and someone with an inspiring story to tell.Carolyn lives with celiac disease, and in this episode, she shares her journey: from navigating the challenges of her diagnosis to the surprising lessons she learned along the way. Her desire for a truly good gluten-free cookie led her to create her own and eventually, her own line of cookies and now even gluten-free flour. I learned so much not just about celiac disease, but also about what it takes to go from baking in your kitchen to running a commercial bakery. Spoiler: it’s more complicated than you think.And yes, the cookies are fantastic.
Enjoy the episode!
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What an incredible milestone! What began as a simple idea during the pandemic, something to keep me busy in retirement and a way to give back to the scleroderma community has grown into something truly meaningful. I’ve been deeply moved by how warmly this podcast has been received. In this special episode, I want to honor that spirit by reconnecting with the incredible scleroderma warriors who generously shared their stories. Let’s check in and see how they’re doing. Let’s begin.
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If you’ve been following along, you know gut health and digestive issues are some of my favorite topics. That’s why I was especially excited to sit down with today’s guest, Allison Samon, a functional nutritionist who takes a holistic approach to health—right up my alley. In this episode, we focused on a major issue so many of us deal with: fatigue. Allison brought such great energy to the conversation (ironic, right?) and shared some really insightful ways nutrition can support better energy levels. It was a fun and fascinating chat.
Her Reboot from Chronic Illness Cleanse (that she referenced during the episode): https://detoxwithallie.com/
And her free gift (that she also mentioned): https://www.chronicillnessrelief.com/ -
Today, I’m joined by Dr. Elizabeth Ortiz, a rheumatologist who takes a holistic approach to treating scleroderma—something that deeply resonates with me.Even after living with this disease for 25 years, I walked away from this conversation with new insights, and I know you will too. Tune in and discover valuable perspectives on managing scleroderma!
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I had an engaging and insightful conversation with rheumatologist, Dr. Michael York, a highly knowledgeable expert with a great sense of humor, on my latest podcast episode. We explored the key challenges affecting the hands, including Raynaud’s, digital ulcers, and calcinosis, and their impact on patients. Dr. York also provided a fascinating explanation of why scleroderma research presents such unique difficulties.
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The gut microbiome has become one of my favorite topics, especially since, like many of my fellow scleroderma warriors, I experience stomach issues. Today, we dive deep into the intestinal challenges that come with our diagnosis with Dr. Joy Liu. She provides an in-depth and insightful discussion, breaking down these complex issues with great clarity.
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Today’s guest is Rashmi Bhasin, a true scleroderma warrior. Like many women seeking a proper diagnosis, she was repeatedly told her symptoms were due to hormones or stress. As a result, it took four years to finally get the correct diagnosis. But rather than letting that struggle define her, she turned it into a force for good. Today, she leads Scleroderma India, advocating for others facing similar challenges. Tune in to hear her inspiring journey firsthand!
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Today’s guest is scleroderma warrior Emily Radican. Over the years, Emily has been diagnosed with a range of autoimmune diseases, and five years ago, Limited Scleroderma became part of her journey. Many of her health challenges have revolved around her gut, which inspired her to pursue a degree in nutrition. Now, she’s working toward her Ph.D. in Nutritional Science and Food Chemistry. Join us as we dive into her story, her autoimmune journey, and her exciting plans for the future after graduation!
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Get ready for a fascinating deep dive into one of my favorite topics—sleep! In today’s episode, we’re joined by Dr. Sabra Abbott, an expert in all things sleep-related. Together, we explore the three critical stages of sleep, the unique challenges scleroderma patients face when it comes to getting quality rest, and practical strategies to improve your sleep. By the end of our conversation, you’ll feel informed, inspired, and maybe even a little more well-rested!
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Today, we have an incredible guest joining us—rheumatologist Dr. David Collier. With 28 years as a Professor of Medicine at the University of Colorado Medical School and 25 years leading the scleroderma clinic, Dr. Collier is a true expert in the field. Currently, he’s consulting with Kyverna Therapeutics, working on groundbreaking (CAR) T-cell therapy.
We’ve all been hearing the buzz about this innovative treatment for scleroderma, and today, we’re diving in to learn what it’s all about. Get ready for a fascinating science lesson—you won’t want to miss this! Let’s get started! -
Today, I’m thrilled to introduce Dr. Cristina Padilla, a remarkable physician I had the pleasure of meeting at a recent conference. In this episode, we delve into the work being done at the Pittsburgh Scleroderma Center, where Dr. Padilla focuses on translational research into interstitial lung disease. Through our conversation, you’ll not only learn about her invaluable contributions to the field but also hear her deep passion for advancing scleroderma research and improving patient care. Let’s get started!
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Today’s guest is Melissa Marquis, who shares her incredible journey of perseverance and advocacy. It took 10 years for Melissa to receive a diagnosis of undifferentiated connective tissue disease—a condition where the immune system attacks connective tissues, but the symptoms and lab results don’t fully align with any specific connective tissue disease. Three years later, she was diagnosed with limited cutaneous systemic sclerosis. After years of uncertainty and navigating frustrating symptoms, Melissa turned her experiences into a resource for others. She authored the book Invisible: A Nurse-Turned-Patient’s Resource to Living Well with Autoimmune Disease to support those facing similar challenges in their quest for answers.
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What an inspiring guest we have today! Allison Zhang’s story is a testament to resilience and determination. Living 24 years with scleroderma is no small feat, and founding the first national scleroderma NGO in China shows her incredible dedication to helping others in similar situations.
Through this conversation, we’ll not only get a glimpse into her personal journey of managing scleroderma since childhood but also learn about her efforts to advocate for and empower the scleroderma community in China. Let’s dive in and uncover how Allison has turned her challenges into a platform for change and hope!. -
In today’s episode, I’m joined by Danielle Rice, a clinical and health psychologist whose PhD research zeroed in on a unique perspective: how to support caregivers of scleroderma patients. Believe it or not, before Danielle’s work, there had only been one small study on this crucial topic! We often overlook how scleroderma affects not only the patients but also their loved ones. Danielle has done incredible work to bring much-needed support to caregivers, and today, she shares insights on the impact they face and the ways not to feel isolated.
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Today, I’m thrilled to chat with Dr. Deanna Baker Frost—whom I had the privilege of meeting at the National Scleroderma Conference. When I asked her to join me on the podcast, she agreed enthusiastically, requesting a topic that would be impactful for patients. I suggested osteoporosis, given that 80% of scleroderma patients are women, and 80% of the estimated 10 million Americans with osteoporosis are women, too. In this episode, we dive into everything osteoporosis. Buckle up—there’s a lot to learn!”
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Today, I talk with Dr. Sean Fortier, a specialist in pulmonary medicine. Since more than 40% of scleroderma patients show evidence of interstitial lung disease, I thought it was important to discuss pulmonary fibrosis and pulmonary hypertension. Dr. Fortier and I also discuss his research, which I found very encouraging—and I believe you will, too.
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In the last episode, you heard Dr. Shah discuss autologous stem cell transplants. In today’s episode, you’ll meet Kim Rodning, the first non-trial recipient of an autologous stem cell transplant at Duke University. Like many scleroderma warriors, Kim remains positive and upbeat, even in the face of adversity. Her story is truly heartwarming.
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Today's guest is Dr. Ankoor Shah. He is the Director of the Duke Scleroderma Clinic. In our episode today, we discuss his clinic and what it has to offer to scleroderma patients. We then dive into the main topic of our talk, stem cell transplant. I learned so much about what stem cell transplant involves and how it has helped the scleroderma community.
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Today's guest is Terri Pilawa. Terri started feeling ill in 2008 and was finally diagnosed correctly after 4 years of not knowing what was wrong in 2012 with Idiopathic Pulmonary Fibrosis. She was told she needed a lung transplant. In 2015, she had a successful double lung transplant. As a part of her journey she became involved with the One Breath Foundation and is now the CEO. Let's hear about both her IPF journey and her involvement in the One Breath Foundation.
- Se mer
