My ‘blessing in disguise’ IgG4-RD diagnosis gifted me a new family

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 me to a place where I can now offer safe spaces, understanding, compassion, guidance, love, and resources to others walking a similar journey.

I’d love for others to see how my diagnoses and journey have transformed me and my perspective. I no longer view my conditions as purely negative. It was incredibly challenging to navigate all the emotions and thoughts I was having during my diagnoses and initial treatments, but I now refer to my diagnoses as blessings in disguise. My rare, autoimmune, and chronic conditions have become my reason for survival and the foundation of my efforts to do good, and to help others navigate their own path.

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Embracing my community

One thing I have come to love are the events that bring together the members of the immunoglobulin G4-related disease (IgG4-RD) community, and the rare, autoimmune, and chronic illness community members as well. These in-person gatherings present a unique opportunity to connect with medical professionals and specialists from across the country, and sometimes the globe. They are moments that help us form our own little families within this rare and wonderful space.

I attend such gatherings for the personal information and care I require, and to learn more about my disease and my community.

I strive to understand the different ways that IgG4-RD can affect patients — how it affects their mental, physical, emotional, and spiritual health. I even cofounded IgG4-RD Life Foundation to further my understanding of the impact of IgG4-RD, and to provide helpful and accessible resources so my community receives the disease-specific care that’s so lacking. Each of these areas requires its own research, study, and presentation, so new information and clinical data may emerge about organ and system involvement.

I recently attended the IgG4ward! Peach Jamboree in Atlanta, the organization’s second “jam” for patients and clinicians. Checking into the hotel, I was greeted with familiar faces I hadn’t seen in a year. I was immediately overwhelmed with love, joy, and that unmistakable feeling of belonging that’s unmatched elsewhere in our lives.

If there’s one thing I can encourage all patients to do, it’s to attend any and all relevant events, seminars, and gatherings whenever and wherever they happen. Even if some elements are missing or lacking in an event’s curriculum, or if the information or seminars are difficult to understand and feel too mundane, the positivity and good that come from these get-togethers and experiences make them absolutely worth it.

Getting to know fellow patients, understanding the broad spectrum of our disease, and realizing that we all face similar struggles are truly enlightening. In the future, I hope to see our patient and caregiver communities equipped with every resource they need — knowledge, guidance, and accessible treatment options. Supporting organizations that uplift our community is essential.

Together, we can build a stronger, more connected future for all those affected by IgG4-RD.

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.