Patient Perspective: Janet Church on Navigating Sj?gren’s Disease and Advocating for Change

In my work advancing therapies for autoantibody diseases at Johnson & Johnson, we are guided by patients, and so I was thrilled to speak with Janet E. Church , President and CEO of the Sj?gren’s Foundation. Janet’s decades-long journey living with Sj?gren’s disease (SjD) mirrors that of many SjD patients—long diagnostic delays, limited treatment options, and navigating a healthcare system that often misunderstands this complex disease. In this conversation, Janet shares her perspective on the challenges of living with SjD, the gaps in current care, and her hopes for the future of treatment and research.?

Fede: I’d love to hear about your personal journey with SjD and how that led to your passion for advocacy. When did it start, and how long did it take for you to get a diagnosis??

Janet: It took 32 years from my first symptoms to a diagnosis. My journey began at 8, though I wasn’t diagnosed until I was 40. Looking back, I now recognize childhood SjD symptoms, but at the time, my concurrent health issues led to confusion and endless doctor visits. My first memory was constant lymph node swelling that lasted for years. It wasn’t until my mid-30s, after sinus infections, surgeries, and a hospital stay for aseptic meningitis, that doctors suspected an immune disease. Even then, it took seeing a specific diagnostician to finally suggest it was autoimmune—I was referred to a rheumatologist and I received a proper diagnosis nine months after my hospitalization. “You’re lucky—you have the easy autoimmune disease. You can manage with eye drops and water,” my rheumatologist downplayed the seriousness of my disease.??

Fede: That’s quite a journey. How often do you think this experience happens with moderate-to-severe disease??

Janet: It happens a lot! Especially doctors telling patients it isn’t a serious disease. We don’t have clear data on Sj?gren’s, and it has been a misunderstood, underdiagnosed and misdiagnosed disease for decades. Even patients with access to great care struggle to receive a diagnosis and proper care. Take Venus Williams, for example — her journey with the disease shows that this can happen to anyone, regardless of resources.?

Fede: That’s eye-opening. What daily challenges did you face??

Janet: Finding the right medical care team was my biggest challenge. On average, Sj?gren’s patients need five-to-eight doctors to help manage the disease, I have nine doctors. Although the disease greatly impacts my life, I’m fortunate that I rarely have brain fog, and my fatigue is manageable which allows me to work. Daily, it is a challenge to manage all symptoms and a challenge to have a social life. I’m lucky to channel the difficulties of living with this disease into meaningful work through the foundation.?

Fede: It really is inspiring. What common frustrations do other patients share with you??

Janet: A major frustration is doctors’ lack of knowledge about the disease in general, and especially of different patient profiles. Seronegative patients, or those with symptoms but no antibodies, are often dismissed. Even those diagnosed struggle to find doctors who understand SjD beyond dry eyes and mouth. But awareness of the disease may be changing; there are many SjD presentations and abstracts at the upcoming?American College of Rheumatology Annual Meeting and we are seeing an increase in SjD education with primary care, oral and ocular medicine, pulmonology and neurology.?

Fede: What are your thoughts on how patients manage SjD??

Janet: Patients feel there aren’t many treatment options. We mainly manage our symptoms and not really treat the whole disease. No approved treatments address SjD root causes or its systemic manifestations, but we’re hopeful about potential investigational therapies that may help improve quality of life, especially dryness and fatigue.?

Fede: Are your hopes centered on specific symptoms??

Janet: We all want something with a proven safety profile that can help put us into remission. For most of us, that means we can make tears and saliva, that our inflammation is low and we are mostly pain free, and that our fatigue and brain fog are managed. For many, it can mean that the disease stops attacking organs and the nervous system. I’m excited by the number of trials underway studying investigational products in different forms of the disease. SjD often becomes a huge barrier to simple activities like eating acidic or spicy foods, being able to swallow food, tolerating a sunny day without skin rashes, and having energy to keep all commitments so you don’t disappoint friends. Personally, I’d love to be able to dance the night away without having an excessively dry mouth and throat stop me. Or take a walk on the beach on a sunny day without hives or a purpura developing on my exposed skin. Patients learn how to manage life, but the trade-offs are big.?

Fede: Your resilience is inspiring. You’ve become such a strong advocate. Do you have any messages for researchers? How receptive is the patient community to participating in studies??

Janet: We’re in close contact with top researchers and frequently discuss the need for better diagnostic tools and an understanding of the disease and varied patient profiles. Many patients are eager to participate in research, while others are hesitant, so we spend time educating patients about the value of research and how it leads to better treatments.?

Fede: What do healthcare providers need to know? Do you think they understand the latest research and clinical considerations??

Janet: Unfortunately, many doctors still don’t fully grasp the disease or the therapeutic landscape. However, we remain optimistic about those who are willing to learn and help their patients better. SjD patients need almost every kind of specialist; we need multi-disciplinary care, and that begins with HCPs building relationships and communicating to ensure patients are getting better care?

Fede: How can the pharmaceutical industry, advocacy groups, and academia collaborate better???

Janet: There’s a lot of work to do! We estimate half of SjD patients are not correctly diagnosed. We need to ramp up education for all HCPs so they can treat patients, especially in underserved areas. I hope we can come together to train providers, ensure equal access, and identify overlooked patients. As the leader of a patient advocacy organization, I hope to build the bridges for these connections and programs.?

Fede: Thank you for your time today, Janet. Your insights are invaluable as we work toward better outcomes for people living with SjD.?

For more information on Johnson & Johnson’s latest Sj?gren’s research, click here.??