Mogil's Mobcast-A Scleroderma Chat Ann

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.

 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]