Mogil's Mobcast-A Scleroderma Chat

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!

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.

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!

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.

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.

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!

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!

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!

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!

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.

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.

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!”

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.

 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.

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. 

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.

Today's podcast is with Ezra Halsted who was diagnosed with scleroderma at the age of 16. It was very interesting to hear the perspective of someone who was diagnosed young  and how that changed her youth. 

Today's guest is Jeremy Quinby. Jeremy is an integrative health practitioner and educator, Certified Craniosacral Therapist, Nationally Certified Massage Therapist, and Certified Movement and Post-rehab Specialist.  In today's episode, we discuss what craniosacral therapy is and how it can help scleroderma patients as well as others with pain. 

Today's guest is Yen Chen. Yen is a health behavioral researcher in the Department of Physical Medicine and Rehabilitation and Rheumatology Division at the University of Michigan. Yen is doing a study called Brain Boost program which deals with cognitive dysfunction or brain fog. Today we talk about the definition of brain fog, general causes of brain fog, and how it pertains to scleroderma patients. We also cover activities that can be done to help if you're having brain fog. Lots of great information.

Today's guest is Ilaria Galetti, a scleroderma warrior for over 27 years and currently awaiting a lung transplant. Like many scleroderma warriors she is an advocate for the disease. Ilaria is the Vice President of the Federation of European Scleroderma Associations FESCA. Listen to hear about her journey and her advocacy work.

Today's topic is on the evolution of scleroderma. Dr. Medgser joins us in this discussion as he is a rheumatologist who practiced for 46 years and is currently retired. He started his interest in rheumatology at the University of Pittsburgh, which was the first institution to have a scleroderma center. It was here that Dr. Medgser met and worked with Dr. Rodnan, who is considered the "father of scleroderma”. It was really interesting to hear how practices and diagnosis has changed over the years. And what still needs to be done to help scleroderma patients. 

Today's guest is Jim Stempel. Jim has been a scleroderma warrior for almost 2 decades. For him scleroderma attacked his lungs, resulting in a lung transplant in 2018. He then decided to retire which led him to volunteer. Jim is doing wonderful advocacy for the scleroderma community. Listen to hear his journey and how is giving back.

 Today's guest is Tami Yap. She is an oral medicine specialist. Tami deals with everything in the mouth except the teeth and gums. She is the connection between dentistry and medicine. Today we talk about 3 major concerns for scleroderma patients: the changing of the mouth's elasticity, changes in saliva, and whether the teeth will be affected by these changes.

Today's guest is Dr. Afton Hassett. She is an Associate Professor and the Director of Pain and Opioid Research in the Department of Anesthesiology at the University of Michigan. She recently published a book called Chronic Pain Reset, 30 Days of Activities, and Skills to Help You Thrive. In our discussion, she explains the different types of pain, the different domains within the 30 activities, and samples of activities to help with chronic pain. The activities are so helpful. 

Today's guest is Dr. Beth Vukin. Beth is a Scleroderma warrior and a pediatric doctor. Beth was diagnosed recently but has had signs for 3 years. We discuss how, even as a doctor, it is hard to diagnose Scleroderma. 

Today's guest is Dr. Julia Speirings. Dr. Speirings is a rheumatologist from the Netherlands. She is doing a research project on the hands called Handsome. I was so excited to know that there was a project that deals with hands. My hands are a source of most of my frustration with Scleroderma. Listen to learn all about this project.

Today's guest, Tara Haneveld, received the same present as I did for my 40th birthday, a diagnosis of systemic scleroderma. And just like how my symptoms started to manifest with swelling fingers, hers did as well. Similarly, we both have watermelon stomach! Luckily, she was diagnosed within 3 months of her swelling. She says her being in the health field helped her quick diagnosis. As her scleroderma journey continued, Tara has taken on the role as Deputy Chair | Queensland Representative Scleroderma Australia.

Today's guests are Shelly Mathis and Teresa Barnes. They are both are integral parts of an organization called PF (Pulmonary Fibrosis) Warriors. Since the lungs are impacted in roughly 80% of all patients with scleroderma, I thought meeting both guests and learning about their organization was so important.

Today's guest is scleroderma warrior Liz Penwill. In the 2 years since Liz has been diagnosed, her life has been turned upside down. With all the changes she has had to endure, she has kept a positive attitude. Her laugh is contagious and she brings a great upbeat perspective to this disease.

 In today's  episode you'll meet Emma Blamont, she is the head researcher at Scleroderma and Raynaud's UK. Emma gives us the history of SRUK, what the organization offers, the research philosophy, and what SRKU focuses on when choosing their research. 

Today's guest is Dr. Duncan Moore from the Northwestern Scleroderma Center. Our topic today is classification and diagnosis of scleroderma.  There is a classification point system that rheumatologists can use to help determine diagnosis. Dr. Moore talks through the classification system. We discuss the differences between diffuse cutaneous systemic Sclerosis and limited cutaneous systemic Sclerosis. We end with Dr. Moore and the scleroderma center offering to coordinate with your local rheumatologist to help with diagnosis and treatment.1. The 2008 paper by Koenig et al. which describes various rates of progression from Raynaud's phenomenon to systemic sclerosis. Free to access. [https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.24038]2. The 2013 ACR/EULAR Classification Criteria for Systemic Sclerosis. Free to access. [https://ard.bmj.com/content/72/11/1747.long]

Today's episode we discuss the importance of stretching the hands, mouth and face. Janet also gives some stretching activities for you to do. We also talk about gadgets that can help warriors in everyday living, with Raynaud's and ulcers. Here are some links for her stretches:http://www.scleroderma.org/site/DocServer/Form_16c_low_res.pdf?docID=19809&AddInterest=1281https://www.selfmanagescleroderma.com

In today's episode I chat with Glen and Elizabeth Copeland. Glen was diagnosed with Systemic Scleroderma in 2017. This is my first episode interviewing a warrior and their partner.  It was so fascinating to get the perspective of both the patient and the caregiver.

Today's guest is Dr. Carrie Richardson. Dr. Richardson is a rheumatologist and the co-director of the Northwestern Scleroderma Program. It was wonderful to learn about Northwestern's Scleroderma Program. We discussed calcinosis, which many will know is a huge problem for me. We also talked about myositis, which I knew little about. She talked about the relationship between the esophagus and interstitial lung disease, a very interesting study. We end our talk on osteoporosis, and how it affects scleroderma warriors. 

Today on my podcast I talk with 3 young women,  Giovanna who has a Doctorate in Occupational Therapy, Kate  a 2nd year Medical Student at Albany Medical School and Torie a 4th year Pharmacy Student at Albany College of Pharmacy and Health Sciences. These women participated in the interdisciplinary education event sponsored by the Stephen's Foundation. The Stephan's Foundation provides education on scleroderma. After attending the event, all 3 decided to research scleroderma in their respective fields. 

 Today's guest is Dr. Parina Aggarwal. Dr. Aggarwal is a practicing sleep medicine physician. We talk about what sleep is, and why we need it. Then we go into detail about the 4 stages of sleep. We next move into information that relates directly to patients with scleroderma, we talk about what features of scleroderma may cause greater sleep disruption and are there certain sleep disorders that may be more prevalent in scleroderma. We also talk about ways to sleep better and medications and supplements.

Today's guest is Dr. Todd Brennan. Dr. Brennan is a podiatry specialist from Florida. Today we discuss issues with feet due to scleroderma, some complications that happen to the feet, medications, and what a scleroderma warrior can do to help with those feet issues. There is a lot of practical advice. 

Today's guest is Cosette Wu. Cosette is the founder of Scleroderma United. Their mission is connecting and empowering scleroderma warriors around the world. Cosette started the organization in high school after her grandfather died of scleroderma. It's a wonderful story!

Today's guest is scleroderma warrior Erion Moore. I was lucky enough to meet Erion at a leadership conference in New Orleans this October. He and I, unbeknownst to either of us, are on the same committee. It was so much fun to meet him in person. Erion is as witty and funny in person as he is as a guest. 

Today's guest is film producer Christy McCaffrey. Christy's mom passed away from scleroderma. After the loss, she created a non-profit called Project Scleroderma. In our conversation, we talk about her mom's short journey with scleroderma, her mission with Project Scleroderma, and the films she has produced. 

Today's guest is Elaine Furst. Elaine is a retired nurse and a nurse-educator. Our topic today is scleroderma and sexuality. We spend some time talking about the definitions of sensuality and sexuality and the importance of both. Our conversation transitions to how to deal with chronic illness and sexuality.

Today's guest is my rheumatologist Dr. Jerry Molitor. Dr. Molitor, acting chief of Rheumatology at the VA Hospital-Minneapolis  and is an Associate Professor of Medicine in the Division of Rheumatic and Autoimmune Diseases at the University of Minnesota Medical School. We had a wonderful conversation and started our discussion on the CONQUER Registry (an acronym for Collaborative National Quality and Efficacy Registry), which is a National Scleroderma Patient Registry. We also discussed the Clinical Study Consortium and ideas on how to get involved with trial studies. 

Today's guest is a scleroderma warrior, her name is Melanie Gornick. We begin our conversation with her journey with scleroderma. One part of our discussion is focused on the ups and downs of her career and how she started a non profit, Scleroderma Warriors, with a settlement from her former employer.  Let‘s listen to her journey and what her foundation's mission is all about.

Today's guest is Jameela Goudarzi.  She is a family nurse practitioner specializing in primary care and family medicine at the Medical University of South Carolina. The topic today is self care, during our conversation we talk about what self care is and some basic needs we all have. We then talk about ideas of what we can all do to meet those basic needs. Next we talk about self management classes that are offered. Finally two stories of how people with chronic illnesses took the ideas of basic needs and used them in their lives.

Today is a returning guest, Dr. Michael Hughes. In our discussion we talk about 2 topics. One is on the kidneys and how it affects scleroderma patients and the 2nd topic is on neurological problems and neuromuscular manifestations associated with scleroderma. It was another great conversation and I learned so much. For more background information on Dr. Hughes, you can either go back to episode 39 or go to my website. 

 Today's guest is Heather Franz. Heather is a scleroderma warrior. She is also the executive director of the patient safety and clinical competency at Albany Medical Center. Heather volunteers with the Steffens Scleroderma Foundation interpersonal educational event in teaching the art of interviewing and active listening. Let's learn more about her and all that she does.

Jeffrey is currently the Director of Professional Affairs and an Associate Professor of Pharmacy Practice at the Albany College of Pharmacy and Health Sciences.  Today's episode is about IPE, Interprofessional education. Until recently, I had no idea what IPE was or how it worked. After being invited to be part of Steffen's IPE experience, which was fantastic, I now realize that this type of IPE program should be available to all college students working in the health sciences. 

Today's episode is with scleroderma warrior Donna Dinkin. I love chatting with my fellow warriors. I learn so much, especially what we share in common. Donna starts her journey with her disease in 2011 at age 50 when she is diagnosed with Graves disease. A lot of us know how hard it is to get an accurate diagnosis. Donna takes us through her journey, ending our conversation with her memoir: Thursdays with Eugene: A Memoir Of Living While You Think You're Dying. A wonderful book in which I think we can all find a relatable part.