Mogil's Mobcast-A Scleroderma Chat

Today I talk with Dr. Michael Hughes, he is a consultant rheumatologist at Salford Royal Hospital, which is a national UK referral center for SSc, and Honorary Senior Clinical Lecturer at The University of Manchester. He has emerged as a leading national and international investigator in SSc and Raynaud’s phenomenon, with a focus on novel clinical assessment of vascular biology and function, including the development of new novel approaches to treatment. His doctoral PhD research fellowship (2013-2016) at The University of Manchester investigated the outcome measures of treatment efficacy, pathophysiology, and local treatments for SSc-digital ulcers. Dr.Hughes has a strong research interest in non-invasive imaging and the development of patient reported outcome measures, and works closely with patient-led organizations. He was awarded the Edith Busch Young Investigator Award in recognition of his significant contributions during the World Scleroderma Congress in 2022. Under the auspices of the World Scleroderma Foundation he leads the Digital Ulcer Working Group, and co-leads the Gastrointestinal disease Working Group. Dr. Hughes has published extensively in both clinical and basic research and has contributed to the development of SSc treatment guidelines and recommendations. He contributes to many international initiatives and collaborations including as a Fellow of the OMERACT Scleroderma Vascular Disease Working Group. He has presented and chaired (including invited oral presentations) at prestigious national and international conferences and is on the editorial board of several international rheumatology journals. Furthermore, he has published several studies in high-impact journals as lead author utilizing data from the EUSTAR cohort. Our topic today is 3 things that affect me. Raynauds, calcinosis, and digital ulcers. Lots of great information and helpful hints!

In this episode I talk with Dr. Saketkoo, she is director and founder of New Orleans Scleroderma and Sarcoidosis Patient Care and Research Center. She is a clinical researcher recognized for her work in clinical trial design, in identifying patients' priorities in life-threatening autoimmune illness including pulmonary hypertension and pulmonary fibrosis, and developing research tools with patients including targeting self-management strategies with yoga, dance and singing for lung health rehabilitation as well as mindfulness practices. She is currently co-director/co-founder of UMC Comprehensive Pulmonary Hypertension Center and Interstitial Lung Disease Clinic Programs with Louisiana State University and Tulane University Schools of Medicine. In 2018, she was honored with Doctor of the Year from the Scleroderma Foundation.
Our focus today is on the importance of exercise. Dr. Saketkoo goes into scientific detail on how exercise helps our body.

In this episode, I talk with Greg Cohen. Greg is a scleroderma warrior. He is a nationally board certified health and wellness coach and a marathon runner. Greg Cohen shares his story on how he chose to spread awareness and raise money for scleroderma. Greg’s positive energy is contagious and uplifting.

Today, I talk with Erin Raber.  Erin is a board certified Music Therapist, clinical mental health counselor, and certified sound healing practitioner. She teaches us the importance of music for our health and how to use music in our everyday routines.
To read her bio, go to my webpage mogilsmobcast.com

"If you are interested in scheduling an individual or group music therapy session with Erin, you can reach her at [email protected]."

In today's episode I talk with Dr. Lee Shapiro. Dr. Shapiro is a Professor of Medicine in the Division of Rheumatology at Albany Medical College in Albany, NY and directs the scleroderma center there. He is also founder and chief medical officer of the Steffens Scleroderma Foundation.  He has been on the medical advisory board of the Scleroderma Foundation TriState for more than 30 years. Today you will learn more about the Steffens Foundation and the interpersonal education that has been implemented. 

 Today's episode is with another fabulous scleroderma warrior, her name is Amy Gietzen. Amy was diagnosed with scleroderma at the early age of 19. She has been a strong advocate of sharing her story with the scleroderma world. Amy started a group called Scleroderma Super Stars for patients ages 18-40, which you can now find on Inspire, Inspire is the world's largest and fastest growing online health community (https://www.inspire.com). She also started a virtual meetup group called SYNC, Young Adults Needing Connections.

 Today's episode is with Celeste Freeman. Celeste is an occupational therapist, certified hand therapist, and has been working with scleroderma patients for around 15 years. She was recently awarded the Paul Brand Award through the American Society of Hand Therapists. You can learn more about this prestigious award in Celeste’s bio. In this episode, we talk about the anatomy of a scleroderma hand and the patterns of damage. We talk about strategies of taking care of our hands and lastly we talk about gadgets that can make our lives easier. The gadgets will be posted on my website. Celeste's mantra is softer not harder and smarter not harder. 

Today's guest is Rachel Lando. She is a Scleroderma Warrior with a great sense of humor and has started an organization that offers free fitness for Scleroderma patients and people with chronic conditions. She knows how important movement is, regardless of the condition you’re in. 

Today’s episode is with  Dr. John Pauling. Dr. Pauling is a consultant rheumatologist at North Bristol NHS Trust and an Honorary Senior Lecturer at the University of Bristol Medical School. In today’s podcast, we talk about antibodies and their connection to scleroderma. We define what antibodies are, different types of antibodies found in scleroderma patients, and what those antibodies tell us about a scleroderma patient's diagnosis. We also discuss the 15% rule and Raynauds

In today's episode, I talk with Eileen Laird. Eileen is both inspiring and motivating. She shares her journey with rheumatoid arthritis, which started with her being immobilized and in excruciating pain but is now living a life almost pain free. We talk about how diet, lifestyle, and mindset helped her on her journey to better health. These tenets led her to writing her book: Healing Mindset: A Guide to Mind Body Connection For People with Autoimmune Disease. To close the conversation, we talk about the purpose of the book, how the book is set up, her favorite chapters, and helpful tips. The book is an excellent tool and I strongly recommend it!