Get Connected Groups unite primary immunodeficiency community

After her diagnosis of common variable immune deficiency (CVID) in 2013, Tobi Lippin reached out to the Immune Deficiency Foundation (IDF) to learn how to navigate insurance coverage for immunoglobulin therapy and find other resources related to her condition.

Once she felt better after treatment, Lippin volunteered for IDF. As an advocate, she contacted legislators about issues impacting the PI community. As a plasma ambassador, she visited plasma centers and thanked donors. But the role that is most meaningful to Lippin is as leader of a Get Connected Group in North Carolina, a volunteer position she started in the fall of 2019.

“In the beginning, I thought I could give back because I know how to run groups, but I get so much out of it too. It has really helped me not feel so isolated, especially during this pandemic,” said Lippin. “We are all dealing with the same issues, and we’ve become a community of zebras.”

IDF Get Connected Groups provide a space for individuals with PI and their family members, including caregivers, to come together and share experiences, exchange information, find resources, and receive support.

Currently, all Get Connected Groups meet online, but they are tailored to serve people living in specific cities, states, and regions. Some groups are designed for certain segments of the PI community, such as young adults, parents, those with autoimmune polyglandular syndrome (APS) type 1, members of the Spanish-speaking community, and healthcare professionals with PI.

Led by volunteers who are members of the PI community, the groups allow for conversations between those affected by PI and don’t include presentations by medical experts or industry representatives. Group members gain access to a community where they can discuss experiences with others who understand the challenges associated with managing PIs and exchange resources and referrals related to healthcare providers and health insurance. Most importantly, the groups offer an opportunity to build a circle of friends who support one another.

Lippin said the North Carolina Triangle Get Connected Group grew once it moved online after the pandemic began and now includes members from across the state as well as attendees from Virginia, Illinois, New York, and New Jersey. The group meets monthly, and when there are more than eight people, Lippin divides the group into breakout rooms. Some people are looking for fellowship and support, and others want specific questions answered.

“I put participants in small groups of three to five so that everybody gets a chance to get their voice in the room, and everybody has the opportunity to connect with each other,” said Lippin, who added that participants can choose to be on-camera or off-camera.

“One of the things we talk about is how hard it is to have a rare disease that most people don’t know about. Others don’t understand when you explain why you can’t go to gatherings. So many people think the pandemic is over, but we’re still at high risk. But in our group, everyone gets it.”

North Carolina Triangle Get Connected Group members bond over health challenges they encounter such as not being able to navigate putting needles in during infusion or concern that a home healthcare nurse is administering infusions correctly, explained Lippin. The group members lend their support to each other and develop a trust that allows for a safe space for discussion.

“We laugh a lot and there is a real spirit of connection here - but there is also a lot of suffering. We talk about challenges like illnesses and hospitalizations. It can be hard, but the camaraderie and sense of belonging contribute to the energy being light. It’s a contradiction,” said Lippin.

“For many of us, we’d never met anyone else with a primary immunodeficiency before the group. Through the lens of our health, it’s like we’ve found our kin. There’s great warmth and care among our members. We may talk about heavy things, but because of our shared understanding, it doesn’t feel heavy.”

At the end of each meeting, Lippin asks members to share how they are feeling or what they learned that was helpful to them. Sometimes people want to stay after the meeting has ended to chat a little longer.

“It’s very clear to me that relationships have developed across people in the group,” said Lippin.

To find a Get Connected Group near you, visit IDF Support Services and follow the links to view the calendar and register. 

In addition, IDF is currently seeking volunteers to co-lead the Young Adult Get Connected Group and lead the Rare of the Rare Get Connected Group. Interested persons should submit a form here to express their interest and learn more.