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…
IgG4-RD Life
— Mahsa Pazokifard
After years of pain, discomfort, and organ failure, Mahsa Pazokifard was diagnosed with Mikulicz’s and Sjogren’s diseases. Mahsa is a passionate advocate for herself and others facing similar struggles, working in global and community-based efforts, including collaborations with various organizations, leading support groups and research platforms, and founding a nonprofit that seeks to empower the patient community in overcoming adversity. Mahsa seeks to promote equitable health care and research for patients with rare and autoimmune diseases.
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…
IgG4‑related disease (IgG4-RD) doesn’t behave like an illness; it behaves like a character — one with a personality so distinct that, after a while, I stopped describing symptoms and started describing traits. If diseases had temperaments, IgG4‑RD would be the quiet, calculating type. The one that sits in the…
I’m all moved out of my old home. But fully settled into the new one? Not even close. Even with all the planning, the lists, the pacing, and the four full weeks I gave myself to move from one home to another, I still managed to overwhelm my body and…
Moving is never just about boxes. When you live with a chronic illness like IgG4-related disease, moving becomes a full‑body experience: physical, emotional, logistical, and deeply personal. I’ve moved more times than I can count: across four countries growing up, across cities while at university, and then again when…
Note: This column describes the author’s own experiences with Rituxan (rituximab) and thoughts on other treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Four and a half years ago, I would have taken any route that promised a chance…
As I plan upcoming work trips, I’m reminded how complex my scheduling is. For many, planning just means booking and showing up. But because I live with a rare chronic illness and juggle multiple roles, my plans constantly shift with medical and work demands. My calendar isn’t just filled with…
There’s an art form in Japan called kintsugi, which entails repairing broken pottery with lacquer mixed with gold or silver so that the cracks don’t disappear. Instead, they become part of the design. I think about kintsugi a lot, because chronic illness doesn’t just break you once. It…
Those of us with rare conditions like IgG4-related disease often talk about the struggle to access affordable and equitable healthcare, but what happens after we temporarily overcome those hurdles? I say “temporarily” because, as many of us know, the obstacles never truly end. We’re constantly forced to jump through…
Did you know that 1 in 6 people has a disability? Don’t worry if you didn’t, because about 80% of disabilities are invisible. Invisible or hidden disabilities are those that lack obvious or visible signs, such as using a cane or wheelchair, or having a noticeable physical difference.
Sometimes, what lingers longest after a symptom flare-up isn’t the pain of my diseases, but the echo of words spoken by others. Words meant to spark positive conversations and encourage and comfort us can instead leave a heavy mark. I constantly remind those around me that living with IgG4-related…
In my childhood, productivity meant going to school, doing homework, getting some playtime in, and ending the day, only to restart the cycle the next day. As I grew older, productivity took on new meaning. It meant checking every box on my to-do list: excelling at work, keeping up with…
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