Mogil's Mobcast-A Scleroderma Chat

Today’s episode is with Dr. Antonia Valenzuela, she is a rheumatologist and an assistant professor at the Pontificia Universidad Católica de Chile in Santiago, Chile, where she carries out clinical, academic, and research work with a focus on the study of scleroderma. She is currently working on validation of the Mawdsley Questionnaire, a patient reported outcome for calcinosis in patients with scleroderma. We discuss what might be causing calcinosis, how we can manage it and the research being done on it.
If you would like to participate in the Mawdsley Questionnaire, you can email Dr. Antonia Valenzuela at [email protected] 

Today's episode is with Helene Golston, she is a scleroderma warrior. She shares with me what she has endured over the past 26 years. Helene has the cup full attitude as you will be able to hear throughout our conversation.

In today’s episode, I talk with Amy DeMaria. She is the Senior Vice President of Marketing of Inspire. Inspire is the world’s largest social network for health. Inspire brings together people across hundreds of disease communities to connect, share information, and provide support. It is an online community for individuals struggling with their disease. It is a safe, secure, and anonymous website for people to connect to one another. Inspire has over 2 1/2 million members. The scleroderma community has over 77,000 members. Inspire's tagline is : Together we are Better.

In this episode I talk with Physical Therapist Sandy Vojik. One of her philosophies is if you give the body the right stimulation it can improve or heal. She also uses Joseph Pilates philosophy  that if you don't breath well you don't move well. With those 2 ideas she provides breathing techniques, fascia work, and posture exercises. 

In this episode I talk with Sharon Dobie. She is on the board of the Scleroderma Research Foundation, a Family Medicine physician, and Professor Emeritus at the University of Washington School of Medicine. Sharon’s son died of complications from Scleroderma in 2017. Today we talk about the Scleroderma Research Foundation's mission, some of the projects the foundation is working on, Sharon’s story of loss, and a little about Bob Saget.

Today's episode is a solo episode. I talk about Scleroderma Awareness Month and World Scleroderma Day. Then, I share 2 stories that a lot of people can relate to: health insurance and difficulties with a doctor. I hope you enjoy it!

In today's episode, I talk with Ashley Barron. She is the new Celebrity Ambassador for The National Scleroderma Foundation and a newly recording country artist. Ashley also has Scleroderma and has lost her mom to the disease. Ashley has an upbeat personality and is a joy to talk to.

In this episode I finish my conversation with Jessica Farrell. We finish by discussing medications that are used for Raynaud's, the GI tract, Interstitial lung disease, renal disease, and pulmonary hypertension. We will end the discussion with information on how to access medications at affordable prices. You will be well versed on scleroderma medications by the end of this podcast!

In this episode I talk with Jessica Farrell. She is a clinical pharmacist and a professor at the Albany College of Pharmacy and Health Sciences. We discuss the many medications that a scleroderma warrior could take. Jessica has so much information that I decided to divide the podcast into 2 parts. Today in part 1, we first discuss her background and the fabulous contribution she has made to help people gain access to affordable medications. Then we talk about immunosuppressants. 

In this episode I talk with Dr. Brett Thombs, he founded and directs the Scleroderma Patient Intervention program (SPIN) with the help of and in collaboration with over 150 investigators, health care providers, patients, and patient advocates from 8 countries and 50 scleroderma expert centers. The program's philosophy is to help Scleroderma patients live better with the hand that they've been dealt. This is done through research, data, tests, cohorts and programs.