Background/Purpose: Typically, the diagnosis of any autoimmune condition can be challenging and take years. In my case, my diagnosis of Sjögren’s disesase (SjD) was established while hospitalized in cardiac intensive care due to renal failure and cardiomyopathy as a young patient. Over time and years later, my health landscape evolved to an additional diagnosis of systemic lupus erythematous (SLE) with kidney involvement, specifically lupus nephritis. My career as an optometrist allows me a unique perspective on not only understanding the clinical aspects and management of my conditions, but also gives me the knowledge and compassion to treat my patients and advocate for increased awareness of SjD and its multi-systemic nature within the healthcare community.

I was 23 years old and a 3rd year optometry student when I was first diagnosed. I initially presented to my local emergency room with mental confusion, significant tachycardia, nausea, and lethargy.  Clinical examination revealed metabolic acidosis secondary to type 1 distal renal tubular acidosis, hypokalemia, renal failure, and metabolic encephalopathy and cardiomyopathy. The diagnosis was SjD w/Type 1 renal tubular acidosis based on clinical laboratory studies. We were just learning about autoimmune disease in our courses, and I recall the immediate concern of being so young and so sick, and the uncertainty of the disease.

Intervention: Management of any systemic autoimmune disease requires a team approach and collaborative care and the number of subspecialties who are a part of my healthcare team has grown over the last thirty years. This is a key reason that I believe in staying educated on my disease by utilizing reliable resources such as PubMed to review current literature pertaining to my disease. This, in turn, helps ensure that I’m able to communicate with my health care team and that they’re kept up to date on best practices and considerations for my optimal care.

An important example of these collaborative efforts was educating my urologist on the complex nature of my simple lithotripsy procedure for nephrolithiasis and the risk for urinary tract infections that had led to sepsis and multiple hospitalizations for me in the past. This education and awareness was much appreciated by my healthcare team, who often times mistakenly think of SjD as “just dry eye disease”.

Maintenance: Continuing my own education and communicating and advocating for myself with my healthcare team to ensure we’re on the same page is an ongoing effort. My ocular complications have led to a lifelong journey of specializing in the management of ocular surface disease and my continued education and interest in this field facilitated becoming a Diplomat of the American Academy of Optometry in anterior segment disease, which has helped both myself as individual as well as the many patients I treat.

Quality of Life: While education and stronger communication have helped improve care and Quality of Life, there are still gaps in knowledge, management, and treatment options that influence how I’m able to live in a given period.

Takeaway: My efforts to stay educated on my disease and openly communicate with my healthcare team have helped strengthen these relationships and provided a degree of confidence in my own understanding of the disease and what I’m experiencing as well as those who I trust with caring for me. My perspective as an eye care specialist has helped me in my pursuit of quality of life, and ultimately my empathy and true understanding has helped countless patients and other healthcare providers understand this complex disease. 

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/living-well-despite-the-challenges-of-sjogrens-disease-and-systemic-lupus-erythematous-my-perspective-as-a-health-care-provider-and-patient/