Understanding Non-Radiographic Axial Spondyloarthritis - Episode 4
Transcript: Sergio Schwartzman, MD: I'm going to switch gears, and I'm going to first talk a little bit about the disease burden in non-radiographic axial spondyloarthritis. I'm going to ask Tiffany a question afterward because she is going to exemplify the challenge that we see with regard to disease burden. The metrics that are used include patient-reported outcomes, such as the SF-36 [36-item short form health survey], that have demonstrated in studies that the disease burden, both for the mental and for the physical component, of this disease group is equal to that in rheumatoid arthritis and in psoriatic arthritis, if not even potentially greater.
This is also exemplified by the fact that over 40% of patients who have axial spondyloarthritis or non-radiographic axial spondyloarthritis change jobs to less physically demanding roles. Amazingly, slightly over 20% of people who have this disease entity will become disabled by the age of 36, which is very young. With that as an introduction, Tiffany, what has been the impact on your quality of life both from a practical perspective in terms of your social life and from your job? How has this disease impacted that?
Tiffany Westrich-Robertson: That is actually a great segue because I did have to pivot my professional career because of this disease. In terms of my background, I was vice president in business development and project management at a large architectural firm. I was a college instructor as well. When I had onset of the disease, I was having trouble standing for too long. The fatigue was a little overwhelming. The lack of flexibility and having the regimen of having to get up when I am stiff for a long period in the morning was very challenging.
I had to ask myself, should I go back to school and get another career? I, fortunately, was able to toggle my experiences to creating the nonprofit that I run. But in doing that, we had to set up the organization to be open 24/7—24 hours a day, seven days a week—with complete flexibility so that I would be able to work. I have said several times over the course of the last few years that if I did not have the opportunity to work from home, to be able to not commute, to be able to conserve my energy, to rest when I need, and stand when I need, I would never be able to work a full-time job.
So it has affected my work tremendously. I do still have struggles when I travel, such as to conferences. I did have a situation come up not long ago. I was the keynote speaker, and my feet swelled up so bad I couldn't wear my shoes. I had to go on the stage with no shoes on, but at least it was about our disease, and so it was fitting. As far as quality of life socially, I have had to toggle the social experiences to my home predominantly.
I will still go out to dinner, but I cannot stay at a restaurant too long because I'll start to get extremely stiff, and it can be very difficult to stand up and leave. Dinners cannot be lengthy courses, multiple courses. I also have found that social media has been a gift. Some of my best friends I found because of social media. I'm not able to go out as often. When I do go out, there's the constant viewpoint of can I go if there are no seats? For example, if we're going to go to a music event, we have to make sure there are options to purchase seats.
That's always an issue. When we go to watch my stepson’s ballgames, if it's a bleacher, I can't always go because I can't sit for that long. It affects every single part of a person's life, every part. It's a constant daily, time management, disease management, all the way to doing laundry. Can I lift the basket? Can I not lift the basket? Can I stand in a grocery line for 15 minutes? Typically even with that, I can’t go grocery shopping for a long period. It needs to be something where I go in and go out very quickly because I don't know how long I can stand in the line.
Sergio Schwartzman, MD: Your day-to-day life really exemplifies some of the numbers. It brings it to reality in terms of what a patient who has this group of diseases really has to think about and do.
Transcript Edited for Clarity