Building a supportive community for IgG4-RD

Because immunoglobulin G4-related disease (IgG4-RD) is both rare and often misunderstood, it’s common to feel unheard or dismissed. Even loved ones who care about you may not fully grasp what you’re experiencing.

By sharing your experiences and helping those around you learn about IgG4-RD, you can create a support circle that recognizes your challenges, notices when you’re having a harder day, and offers practical or emotional help when needed.

Share your experience with family and friends

Taking the time to explain what IgG4-RD is and how it affects your daily life — from extra appointments and fatigue to pain, infusions, and the emotional ups and downs — helps your family and friends respond with empathy rather than guess what you’re going through.

It can be helpful to:

• share ways your family and friends can support you, such as driving you to appointments or checking in after infusions
• help loved ones understand that symptoms may fluctuate, with some days being more challenging than others, even if you appear fine on the outside
• set boundaries by communicating what you are comfortable discussing and that your needs may change over time
• encourage questions, but remind family and friends that their role is to support you, not to press for information
• talk about how empathy, patience, and understanding can go a long way in helping you manage your mental health

Connect with peers through support groups

Because IgG4-RD is rare, meeting others who have the disease can give you a safe space to share experiences and ask questions.

You can start by exploring social media groups, online forums, and community platforms where people with IgG4-RD and their caregivers share tips, discuss treatments, and discuss the emotional aspects of living with the condition.

For instance, IgG4ward!, an organization dedicated to connecting and supporting the IgG4-RD community, offers an online platform where people with IgG4-RD can connect, share experiences, and find peer support.

Work closely with your care team

Working closely with your healthcare team, including your rheumatologist, immunologist, organ-specific specialists, and primary care doctor, can help manage the medical side of IgG4-RD while also influencing how supported you feel.

When clinicians listen carefully, invite questions, and acknowledge the uncertainties that many people with this condition face, they create an environment of trust and shared decision-making.

Teams that also involve and guide caregivers can further strengthen your support network, ensuring that both you and those helping you have the resources needed to manage this disease.

Educate yourself and others to raise awareness

Because IgG4-RD was only recognized as a unified disease in the early 2000s, many people, even some healthcare providers, may not be familiar with it.

Sharing what you know about the condition and educating yourself further on it can help others understand what people with the disease experience on a day-to-day basis.

You can start by connecting with educational resources and communities, such as:

• the American College of Rheumatology, which provides an overview of IgG4-RD and available treatment options
• IgG4-RD News, which includes perspectives from people living with IgG4-RD, as well as updates on research and care

Sharing educational materials with family, friends, employers, and new doctors can shift conversations from “I’ve never heard of this” to “Help me understand how I can support you.”

You may also want to consider advocacy efforts that raise the profile of IgG4-RD, such as contributing to registries and research. You can also lend your voice to policy initiatives in healthcare laws, regulations, and practices to improve access to care and treatment availability.

Taking these steps can help you feel more connected, supported, and empowered as you navigate life with IgG4-RD.