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EXTRA Part 1- Non-Radiographic Axial Spondyloarthritis: A Conversation with Dr. Jeff Stark and Patient Advocate Ricky White

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The truth is there are more than 100 types of arthritis, but not all of them receive the public recognition they deserve, especially non-radiographic axial spondyloarthritis (non-rad AxSpA).

In the first of a two-part episode, The Health Advocates are joined by rheumatologist and Head of Immunology Medical at UCB, Dr. Jeff Stark, and patient advocate Ricky White who lives with non-rad AxSpA. Dr. Stark and Ricky discuss the challenges in diagnosis, the advancements in treatment, and the research and advocacy being done to improve the patient journey.

"There are barriers for patients around diagnosis and certainly we want for patients with non-radiographic AxSpA to have appropriate treatments,” says Dr. Stark about the challenges patients face, “but there is so much more that can positively impact the journey that patients with this condition undergo."

Among the highlights in this episode:

2:05: “There are over 100 types of arthritis and… part of being a patient advocate and a health advocate is letting people know about this information so that number one: people who are undiagnosed may hear about it and recognize symptoms, and number two: to provide a sense of community for those living with the condition as they hear from us and from others,” says Steven Newmark, Director of Policy at GHLF

2:59: Dr. Stark describes what non-radiographic axial spondyloarthritis (non-rad AxSpA) is and what makes it a particularly challenging disease

4:32: There is a misconception that non-rad AxSpA is a milder form of arthritis but for many patients that's just not the case, according to Dr. Stark

5:05: “There's clearly a lot of room for improvement in the journey to diagnosis with non-rad AxSpA,” says Steven Newmark

5:26: Dr. Stark explains how a new diagnostic code was created so that physicians and health care providers in the U.S. can now record a specific diagnosis of non-rad AxSpA in medical records, thus facilitating the journey to diagnosis

8:33: The importance of clinical research regarding non-rad AxSpA explained

11:04: Ricky, who got diagnosed with ankylosing spondylitis in 2010, would now fall under the category of non-rad AxSpA should he be re-diagnosed today -- but that category did not exist in 2010

12:09: Ricky explains his road to diagnosis

14:12: Dr. Stark asks Ricky to describe his journey to finding the right doctor for him and what he looks for in a rheumatologist

17:29: The importance of community in Ricky’s journey with non-rad AxSpA and where patients can find support

18:45: Ricky explains how he became an advocate and how he uses his own experience and the knowledge he has accumulated about his condition to help other patients

20:14: Ricky’s tips from his own experience of living with his condition

22:27: What our hosts learned from this episode

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF:

Zoe Rothblatt, Associate Director, Community Outreach at GHLF:

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