Mogil's Mobcast-A Scleroderma Chat

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. 

Today’s guest is Daniel Kayajian. He is a speech pathologist specializing in voice and swallowing disorders as well as air issues. Dan talks about the 3 stages of swallowing, signs of swallowing issues, how to diagnose swallowing issues, problems that may occur with scleroderma patients, and some suggestions to help with those issues. If you'd like more information or the information on acidity levels in foods, please email me at: [email protected]