Mogil's Mobcast-A Scleroderma Chat

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.