Mogil's Mobcast-A Scleroderma Chat

What an inspiring guest we have today! Allison Zhang’s story is a testament to resilience and determination. Living 24 years with scleroderma is no small feat, and founding the first national scleroderma NGO in China shows her incredible dedication to helping others in similar situations.
Through this conversation, we’ll not only get a glimpse into her personal journey of managing scleroderma since childhood but also learn about her efforts to advocate for and empower the scleroderma community in China. Let’s dive in and uncover how Allison has turned her challenges into a platform for change and hope!.

In today’s episode, I’m joined by Danielle Rice, a clinical and health psychologist whose PhD research zeroed in on a unique perspective: how to support caregivers of scleroderma patients. Believe it or not, before Danielle’s work, there had only been one small study on this crucial topic! We often overlook how scleroderma affects not only the patients but also their loved ones. Danielle has done incredible work to bring much-needed support to caregivers, and today, she shares insights on the impact they face and the ways not to feel isolated.

Today, I’m thrilled to chat with Dr. Deanna Baker Frost—whom I had the privilege of meeting at the National Scleroderma Conference. When I asked her to join me on the podcast, she agreed enthusiastically, requesting a topic that would be impactful for patients. I suggested osteoporosis, given that 80% of scleroderma patients are women, and 80% of the estimated 10 million Americans with osteoporosis are women, too. In this episode, we dive into everything osteoporosis. Buckle up—there’s a lot to learn!”

Today, I talk with Dr. Sean Fortier, a specialist in pulmonary medicine. Since more than 40% of scleroderma patients show evidence of interstitial lung disease, I thought it was important to discuss pulmonary fibrosis and pulmonary hypertension. Dr. Fortier and I also discuss his research, which I found very encouraging—and I believe you will, too.

 In the last episode, you heard Dr. Shah discuss autologous stem cell transplants. In today’s episode, you’ll meet Kim Rodning, the first non-trial recipient of an autologous stem cell transplant at Duke University. Like many scleroderma warriors, Kim remains positive and upbeat, even in the face of adversity. Her story is truly heartwarming.

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.