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.
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…
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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…
Dear 16-year-old me, I chose to write to you instead of the 5- and 8-year-old versions of you because all I’d do is hold the younger versions and whisper that you’re loved. I know you’re tired. You’re angry, and you feel misunderstood. You’ve lived your whole life through pain and…
For quite some time, the safest place for me to speak about my symptoms and health struggles was through a Facebook page or chat window. I’d send screenshots of scans, paste blood work results, and confess flare‑day fears at midnight. Those messages mattered; they validated the parts of me the…
In the diagnostic phase of my journey, I was learning that I had multiple conditions back to back. While some of these fell under the IgG4-related disease (IgG4-RD) branch and some overlapped with my Sjögren’s disease, the rest have their own standing when it comes to my list…
We often talk about the relief and hope we feel once we finally have a proper IgG4-RD diagnosis, and thus a name for our collection of symptoms. But we rarely talk about the battle that’s yet to come. When we learn we have IgG4-RD, we also learn that…
Living with IgG4-related disease can be overwhelming at times because of its unpredictable nature. Some fellow patients and I often joke about having to spin the wheel of IgG4-RD symptoms when we wake up in the morning, to see what we’ll have to face that day. Jokes aside, the…
After countless appointments, I still clung to a sliver of hope that my new doctors would be able to put a name to the various symptoms I was experiencing. But despite being riddled with pain, I was told that all of my scans and blood work looked normal. “There’s nothing…
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