Celebrating the power of community in life with a rare disease

Before I was diagnosed with IgG4-related disease (IgG4-RD) in 2015, information about the symptoms was virtually nonexistent. I remember searching online for “intermittent chronic eyelid swelling” and finding very little. At one point, I came across only a handful of TikTok videos, and even those weren’t very helpful or relatable to what I was experiencing.

During the COVID-19 pandemic, while sheltering in place from 2020 to 2021, I found myself with more time to research my diagnosis. That’s when I discovered the Facebook group Living with IgG4-Related Disease, and it has truly been life-changing.

The moderators are incredibly knowledgeable and do an excellent job sharing information and resources. The community is caring, informative, supportive, and open about their experiences. By that point, the recurring swelling in my eyelids had largely burned itself out, but I was dealing with chronic double vision. Through the group, I connected with others who had experienced similar symptoms. I also learned about many other manifestations of IgG4-RD that I had never even considered.

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Listening to other people’s experiences has made me appreciate how fortunate I am. I’m grateful to have access to excellent medical care from providers who understand IgG4-RD and have recommended an effective treatment plan. I’m grateful that I can get out of bed every morning and generally feel well. I don’t experience significant pain or fatigue, and while some people might find chronic double vision debilitating, I’ve learned to adapt and live my best life despite it.

Through the Facebook group, I also learned about Rare Patient Voice, a platform that connects patients with researchers conducting clinical trials and other studies on chronic diseases. I was surprised to discover how many research opportunities exist for people affected by IgG4-RD.

Although I did not qualify for a clinical trial, I signed up for several market research studies on IgG4-RD. These studies typically involve a one-hour interview focused on a participant’s experiences with the disease, including symptoms, diagnosis, doctors, treatments, emotions, challenges, and desired outcomes.

Participating in these studies is one way I can give back to the community. Because IgG4-RD is a rare disease, every patient’s perspective matters. I feel that I’m contributing valuable insights into how this disease affects daily life and helping researchers, healthcare organizations, and pharmaceutical companies better understand patients’ needs. I also stay informed through these conversations and continue to connect the dots as new information emerges. Hopefully, the research being conducted today will make it easier for future patients to get diagnosed.

I also learned about IgG4ward!, an organization dedicated to providing support, education, advocacy, and resources related to IgG4-RD. They welcome patients, caregivers, and healthcare professionals alike and offer both in-person events worldwide and virtual programs, creating valuable opportunities to learn more about the disease and connect with others in the IgG4-RD community.

Today, I’m incredibly encouraged by the progress being made. Information is more accessible than ever. Strong patient communities have formed. Research is advancing, and people are being diagnosed and treated more quickly. We now have medications approved specifically for IgG4-RD, with additional therapies on the horizon.

For those of us living with this rare disease, there is more hope, support, and knowledge available today than ever before, and that’s something worth celebrating.

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.