Mogil's Mobcast-A Scleroderma Chat

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=1281 https://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.