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…
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.
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…
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…
Thirteen years ago, I finally decided to confront the neck and lower back pain, fatigue, stiffness, and vertigo that had plagued me since childhood. Endless scans and specialist visits led to vague diagnoses, typically resulting in nothing more than a prescription for physical therapy. Over time, I accumulated a list…
Note: This column describes the author’s own experiences with Rituxan. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In preparation for my upcoming Rituxan (rituximab) infusion, I revisited a symptom tracker journal I started four years ago following…
If I can offer some light in another person’s dark times, I believe I’ve turned my hardships into something meaningful. Once upon a time, things simply happened to me. Today, I understand and believe that those exhaustive hurdles and battles were necessary stepping stones on my path. They have brought…
One thing I am learning as an IgG4-related disease patient, advocate, writer, and the founder and CEO of the IgG4-RD Life Foundation is that patient insights about our experiences are crucial toward building a more accurate and inclusive picture of this disease. That’s why I’m writing here to…
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