Mogil's Mobcast-A Scleroderma Chat

 In today's  episode you'll meet Emma Blamont, she is the head researcher at Scleroderma and Raynaud’s UK. Emma gives us the history of SRUK, what the organization offers, the research philosophy, and what SRKU focuses on when choosing their research. 

Today's guest is Dr. Duncan Moore from the Northwestern Scleroderma Center. Our topic today is classification and diagnosis of scleroderma.  There is a classification point system that rheumatologists can use to help determine diagnosis. Dr. Moore talks through the classification system. We discuss the differences between diffuse cutaneous systemic Sclerosis and limited cutaneous systemic Sclerosis. We end with Dr. Moore and the scleroderma center offering to coordinate with your local rheumatologist to help with diagnosis and treatment.

1. The 2008 paper by Koenig et al. which describes various rates of progression from Raynaud's phenomenon to systemic sclerosis. Free to access. [https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.24038]

2. The 2013 ACR/EULAR Classification Criteria for Systemic Sclerosis. Free to access. [https://ard.bmj.com/content/72/11/1747.long]

Today’s episode we discuss the importance of stretching the hands, mouth and face. Janet also gives some stretching activities for you to do. We also talk about gadgets that can help warriors in everyday living, with Raynaud's and ulcers.
Here are some links for her stretches:
http://www.scleroderma.org/site/DocServer/Form_16c_low_res.pdf?docID=19809&AddInterest=1281

https://www.selfmanagescleroderma.com

In today’s episode I chat with Glen and Elizabeth Copeland. Glen was diagnosed with Systemic Scleroderma in 2017. This is my first episode interviewing a warrior and their partner.  It was so fascinating to get the perspective of both the patient and the caregiver.

Today’s guest is Dr. Carrie Richardson. Dr. Richardson is a rheumatologist and the co-director of the Northwestern Scleroderma Program. It was wonderful to learn about Northwestern’s Scleroderma Program. We discussed calcinosis, which many will know is a huge problem for me. We also talked about myositis, which I knew little about. She talked about the relationship between the esophagus and interstitial lung disease, a very interesting study. We end our talk on osteoporosis, and how it affects scleroderma warriors. 

Today on my podcast I talk with 3 young women,  Giovanna who has a Doctorate in Occupational Therapy, Kate  a 2nd year Medical Student at Albany Medical School and Torie a 4th year Pharmacy Student at Albany College of Pharmacy and Health Sciences. These women participated in the interdisciplinary education event sponsored by the Stephen's Foundation. The Stephan’s Foundation provides education on scleroderma. After attending the event, all 3 decided to research scleroderma in their respective fields. 

 Today's guest is Dr. Parina Aggarwal. Dr. Aggarwal is a practicing sleep medicine physician. We talk about what sleep is, and why we need it. Then we go into detail about the 4 stages of sleep. We next move into information that relates directly to patients with scleroderma, we talk about what features of scleroderma may cause greater sleep disruption and are there certain sleep disorders that may be more prevalent in scleroderma. We also talk about ways to sleep better and medications and supplements.

Today's guest is Dr. Todd Brennan. Dr. Brennan is a podiatry specialist from Florida. Today we discuss issues with feet due to scleroderma, some complications that happen to the feet, medications, and what a scleroderma warrior can do to help with those feet issues. There is a lot of practical advice. 

Today's guest is Cosette Wu. Cosette is the founder of Scleroderma United. Their mission is connecting and empowering scleroderma warriors around the world. Cosette started the organization in high school after her grandfather died of scleroderma. It's a wonderful story!

Today's guest is scleroderma warrior Erion Moore. I was lucky enough to meet Erion at a leadership conference in New Orleans this October. He and I, unbeknownst to either of us, are on the same committee. It was so much fun to meet him in person. Erion is as witty and funny in person as he is as a guest.