Finding community after a decades-long quest for diagnosis

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. “It’s complicated,” I’d usually say, adding that “it’s a relatively undiagnosed autoimmune disease.”

I think that was because I don’t really understand it well myself. Although new information, research, and treatments are emerging more and more these days, I still find IgG4-RD difficult to explain to family and friends. I’m not even sure where to start.

The disease presents itself in my orbits. In late 1989 and early 1990, it presented with intermittent eyelid swelling. When the symptoms first started showing up, I thought it was because I had gotten a cat. But as the frequency of the swelling increased, I tried all sorts of things. I stopped eating seafood, quit smoking, changed my makeup and facial soaps, and took antibiotics. I consulted with every eye specialist at every teaching hospital I could find on the West Coast. I even went to the Mayo Clinic, to no avail.

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After 10 years, in addition to the eyelid swelling, I started having double vision. I consulted various thyroid doctors and neurologists, did acupuncture treatments and cupping, and drank a nasty herbal tonic daily for three months. I was scanned, poked, prodded, and biopsied for 20 years, yet no one could tell me what I had. One of the issues was a months-long wait for referrals, and by the time I was seen by a specialist, the hard-to-predict symptoms had already dissipated.

Then, in 2015, a rheumatologist I’d been seeing for seven years without a diagnosis returned from a conference and declared, “I think I know what you have! There was a case study on IgG4-RD, and the patient exhibited your exact symptoms.” I got tested and biopsied, and voilà — I finally had a diagnosis.

The “good news” at the time was that the rheumatologist didn’t think the condition was terminal. The bad news was that it was a relatively unknown disease. Some drugs had been used to treat it with relative success, my doctors told me. I tried to do some research at the time, but there wasn’t much information available.

Fast-forward to 2026, and now there are Facebook groups of people from around the world with IgG4-RD, as well as conferences for doctors and patients, more current research, clinical trials, and a treatment — Uplizna (inebilizumab) — approved by the U.S. Food and Drug Administration for adults with IgG4-RD.

Compared with other patients, I feel lucky because I don’t have any pain. I can’t see very well sometimes, but I can work, drive, and even golf, despite my double vision. I am encouraged that there is much more information and resources available today, including platforms for sharing, commiserating, and most importantly, making friends and connections as we journey through this disease together.

To see this community support and uplift one another, provide advice, and help find resources gives me hope and faith in the human spirit. I hope there will be more alternatives and solutions down the road, including, one day, a cure.

Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.