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,…
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Life with a chronic illness like immunoglobulin G4-related disease (IgG4-RD) is unpredictable. Just when you think you finally have everything under control and dare to look toward the future with enthusiasm, you stumble over that sneaky condition again. I had convinced myself that I could go back to work…
Living with IgG4-related disease often feels like navigating a world that was not built for me. Like many, I know what it means to search for answers, face uncertainty, experience delays in diagnosis, struggle with insurance barriers, and repeatedly explain a disease that few people have ever heard of.
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…
Note: This column describes the author’s own experiences with various medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. September was supposed to be my month — not only because I was celebrating my birthday, but because I…
Southern California spent the summer behaving like it had a personal vendetta against my autonomic nervous system. I don’t know what kind of identity crisis the atmosphere has been going through — El Niño, La Niña, or La Dramática. But the heat, humidity, and daily barometric pressure swings have turned…
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…
IgG4‑related disease didn’t just infiltrate my organs; it infiltrated my self‑image. It rewrote the way I see myself, the way I move through the world, and the way I feel in my own skin. Chronic illness is usually framed as a medical journey, but I want to acknowledge the…
Mikulicz disease — a rare pattern of organ involvement linked to IgG4-related disease (IgG4-RD) — is often misunderstood. This deeply disruptive condition is multiglandular, affecting the lacrimal glands (which produce tears), the parotid and submandibular glands (major salivary glands), and the lymphatic chain in the head and neck. When…
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…
