Happy Lupus Awareness Month!
I had the pleasure of interviewing Ruth Wilson, a lupus patient and research associate studying lupus in the Fitzgerald Lab at UMass Chan Medical School. Ruth is very passionate about lupus research. She recently worked with the MA Governor's office to have May officially declared Lupus Awareness Month in our state! Go Ruth!
1. Please share a little about your career. How did you get interested in lupus?
I became interested in Lupus when I was diagnosed in November of 2012. Prior to my diagnosis, I was somewhat familiar with Lupus because my sister has it, although her symptoms were somewhat different from mine and she never really spoke to me in length about her illness. So initially, I didn’t really understand the disease. It wasn’t until my own diagnosis that I quickly became familiar with Lupus. It took a good 5-6 years for me to get a clear diagnosis and it wasn’t until my kidneys got involved in April 2013 that I was officially diagnosed with Systemic Lupus Erythematosus (SLE) and Lupus Nephritis. When I got sick, I started learning more about the disease and I realized how little research had been done, up to that point, and how few treatment options there were. I thought there needs to be a better way! More research, more treatments, more funding, more specialized doctors. I kept thinking there must something I can do! At the time I was a stay-at-home mom with two very energetic little kids. My previous training before becoming a mom was in Nursing and I actually didn’t get to finish my bachelor’s because I got pregnant and decided to dedicate myself to my kids completely. I did manage to finish an Associate’s degree in Letters, Arts and Sciences online from The Pennsylvania State University while raising them. After having realized the need for research in the field of Lupus, I decided that I should go back to school to finish my bachelor’s degree in hopes that someday I could eventually work in the field to give back and help the research move forward. After I graduated from Becker College with a degree in Veterinary Science: Laboratory Animal Science, I was offered a job at UMass Chan Medical School in the Kate Fitzgerald's Lab. I was beyond thrilled because I knew that I would finally get to do what I set out to do and was going to be part of an outstanding team! Our lab studies the innate immune system and how it relates to inflammatory and autoimmune diseases such as Lupus.
2. Can you tell us a little about your expertise in lupus research?
As a patient, I think I have become quite the lupus expert! I have been dealing with different aspects of my disease due to different complications that have evolved over the years. I am also extremely familiar with the treatments as I have experienced them as well. I am currently on a new treatment to help decrease my disease activity and cause less damage to my kidneys; it is a treatment that was approved back in December of 2020 called Belimumab that actually binds to BLys (B-cell Lymphocyte stimulator), which inhibits survival of autoreactive B-cells thus decreasing inflammation and organ damage.
As a research associate in the lab, I learn about the immune system in many ways every day. I assist my colleagues in several different projects and get to learn the complex ways in which the immune system acts and reacts to several different autoimmune and inflammatory diseases including Lupus. I am constantly learning that there are many parallels that can be drawn between Lupus and other autoimmune and inflammatory diseases.
3. What is one thing you wish everyone knew about lupus?
Lupus is an extremely debilitating disease because it affects many parts of the body. People may look normal on the outside, but they are suffering deeply on the inside to do the tasks that may seem trivial to a healthy individual. The constant and ever-changing daily symptoms can be frustrating and hard to deal with and make a person feel extremely fatigued and helpless. Being a patient and an advocate for Lupus I always encourage everyone to educate themselves about the disease. Learn as much as you can so that you can advocate for yourself with your various doctors, at work, at school, etc. Having Lupus is not the end-all, but it requires a major lifestyle change and marks the beginning of a long journey. Having a support group that you can share your stories with is extremely helpful and encouraging. You may find that by sharing your story, it can help you cope with the disease and help you find the inspiration and hope that you needed as well as the strength to keep going.
4. What do you think is the future of lupus?
I am extremely hopeful for the future of Lupus. I have seen so many new developments and discoveries about the disease in the last year. We are learning so much about the disease etiology; innate immunity, acquired immunity and inflammation. I know some of the most amazing people who are working hard on understanding the disease to come up with new therapies to help people like me. In the last months we have seen two new therapies that have been approved to treat Lupus and Lupus nephritis, which is an amazing accomplishment for the Lupus research field. It comes to give great relief and hope to those of us who suffer from this disease. Because of the major advances in Lupus research, I foresee a future where individuals with the disease are benefiting from diagnostic tools that can detect disease far earlier in the process before major tissue damage occurs, and new therapies that are more targeted and less toxic. I think that there will be opportunities for both public and private organizations to continue to accelerate progress in Lupus research to further improve quality of life of patients who have Lupus.
5. Any parting words of wisdom for aspiring lupus researchers?
Keep at it!! There is still so much more to learn about this disease and so much more to do in terms of better therapies, diagnostic tools, prevention, education and optimizing clinical trials. Without research, there is no progress. Without compassionate and committed researchers, there will never be a cure. We are counting on you to make new discoveries that can make life better for so many people living with Lupus, and ultimately find a cure to this terrible and complex disease.
You can follow Ruth on Twitter @ruthyr0cks, Fitzgerald Lab @FitzgeraldKate, or our UMass Lupus Research team @UMassLupus
