Guest Voice: Living with IgG4-RD is the new hobby I didn’t want
No patient should experience loss because their disease wasn't recognized in time
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Until 2020, I was healthy by every normal measure. I worked, raised my daughter, spent time with my partner and friends, and found freedom on my motorcycle. Then, in the summer of 2020, severe pain appeared on my right side. It stayed. It spread. And it changed everything.
After months of scans and uncertainty, I was told I might have cancer — lymphoma or sarcoma — and that I could die. That diagnosis was wrong. But the damage was real. I eventually received the correct diagnosis of IgG4-related disease (IgG4-RD), a rare autoimmune disease that had already destroyed my right kidney. A 10 cm-by-4 cm inflammatory mass made it impossible to save it.
This is one of the central problems with IgG4-RD: It hides. Its symptoms are vague. Blood tests can be normal. It often reveals itself late, through imaging, when irreversible organ damage has already occurred. In my case, awareness came too late for my kidney.
Between 2021 and 2022, I was treated with steroids, cytotoxic drugs, and biologics. The treatments kept the disease under control, but at a cost. Fatigue, physical decline, and up to 20 pills a day became my normal. Yet life continued. I worked. I parented. I tried to remain present and engaged while living with a body that no longer felt reliable.
A search for answers
Living with IgG4-RD means living with uncertainty. Flares can happen quietly. Progression can occur without warning. For many patients, reassurance comes not from blood tests, but from repeated scans and clinical follow-ups. This constant vigilance is exhausting, but necessary, as nonspecific pain or symptoms can be the only indicators of a flare-up.
IgG4-RD affects five in 100,000 people. There are no clear causes, limited long-term data, and no curative treatments. Current therapies can be effective, but they often carry significant side effects. Patients must weigh disease control against quality of life — every single day.
What patients need most is awareness — awareness among general practitioners so that diagnoses occur earlier; among specialists so that care is coordinated across organs and systems; and among policymakers and researchers so that rare diseases like IgG4-RD aren’t left behind.
In my search for answers, I connected with others living with IgG4-RD across Europe: six patients, affected in different organs, from different countries, but facing the same challenges, including delayed diagnosis, isolation, uncertainty, and limited information. When we met in person in Barcelona, Spain, we agreed on one thing: This disease must no longer remain invisible.
Together, we are working to build the European Federation of Patients with IgG4-RD. Our goal is to share knowledge across borders, support patients and families, collaborate with clinicians and researchers, and advocate for better care, research funding, and recognition of IgG4-RD as the serious, systemic disease it is.
I did not choose this disease. But I chose to respond to it. In 2025, IgG4-RD became my unwilling hobby — one driven by the belief that no patient should lose an organ, a sense of safety, or years of their life simply because a rare disease was not recognized in time.
Awareness saves organs. Knowledge saves time. Community saves people. Support ensures mental health.
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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.
