Mogil's Mobcast-A Scleroderma Chat

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.