Learning, Living, Thriving - a column by Katrice Lee

I have lived with immunoglobulin G4-related disease (IgG4-RD) affecting my orbits, or eye sockets, for more than 25 years. It began with recurring eyelid swelling and eventually progressed to double vision. While the eyelid swelling has largely subsided over time, I haven’t seen straight since the 1990s. Around 2018,…

I recently attended a free webinar called “Prevail: Creating Your Path Forward with IgG4-RD,” sponsored by the pharmaceutical company Amgen. The speaker was rheumatologist Brittany Panico. What resonated with me most from her presentation was the variety of organs that are commonly affected by the disorder, the range of…

My first symptoms of immunoglobulin G4-related disease (IgG4-RD) appeared around 1990 as intermittent eyelid swelling. At the time, I assumed it was an allergy, because the symptoms began the same day my boyfriend and I brought home a rescued cat. Initially, the swelling happened for about two weeks every…

Before I was diagnosed with IgG4-related disease (IgG4-RD) in 2015, information about the symptoms was virtually nonexistent. I remember searching online for “intermittent chronic eyelid swelling” and finding very little. At one point, I came across only a handful of TikTok videos, and even those weren’t very helpful or…

Note: This column describes the author’s own experiences with Rituxan (rituximab) and Uplizna (inebilizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I have immunoglobulin G4-related disease (IgG4-RD) that presents in the orbits. I had eyelid swelling from 1990…

Although I’ve probably had immunoglobulin G4-related disease (IgG4-RD) for over 30 years, I was officially diagnosed about 10 years ago. Despite this, until recently, I’d never told anyone about it apart from medical professionals. I’d always be vague about what was ailing me, brushing it off when anyone asked.